Whooohooo after a little light lunch with some old friends, I went to the hospital to see my oncologist and get the results of my scan… which of course, was absolutely fine and a joy to see everyone!
Also, a girl on a mission, I was able to see my Macmillan nurse and tell her what I’m up to. She was wonderfully supportive and was able to confirm some of my ideas and also suggest some speakers and organisations to contact that I hadn’t got on my list… how brilliant!
8am – Yoga – Yes you did read that right.. I was up and out and in a yoga class for an 8am start! Along with about 50 other people from the Conference. The little room was packed and as we stretched and posed we all became very close friends!
9am – Quick shower and down to the exhibitors hall to grab a cup of coffee before the next workshop. The other girls were leaving at 11am to fly back to their destinations and headed out with Jen to get some breakfast. Although some of the ladies were a little worse for wear and hadn’t yet made it out of bed after their 6am finish time in the karaoke bar. You know some people might frown upon partying hard at the conference, but for a lot of attendees they can really let their hair down (or take off their wigs) and just be themselves, laugh at themselves, at our situation and be amongst friends. That kinship is more important, sometimes, than anything else and the conference is a way to network with people who are travelling this journey with you.
10am – Workshop Session Four – Body Image: Breaking Through the Mirror – Lillie D Shockney, RN, BS, MAS
I don’t need to tell you why I wanted to attend this workshop!
Lillie Shockney was an awesome speaker, within minutes she had us all thinking, crying or laughing… or for some, all three and it just made sense… so forgive me if I repeat bits and pieces but I think it may help others too. She is a breast cancer survivor herself but was involved as a breast cancer nurse before diagnosis. She has many tales about people and situations that shock and then bring you into fits of laughter as she tells of prosthetics popping out on golf courses and board rooms. I can understand why she is involved in so many educational projects in the US and overseas.
Lillie Shockney is also involved in a project in the Arabia regarding education and medicine for young women. The average age of diagnosis is only 34 and usually death within one year of diagnosis. Scary stuff and it’s no surprise that breast cancer is referred to as ‘Death Fate’.
How we see ourselves is often very different to how we perceive others see us. Think about it some more…
When we hear those four little words “You have breast cancer”, we instantly are fearful. We’re fearful of losing our lives, of losing a breast (part of whole), of losing hair and also of losing our mate, of gaining weight, losing libido, depression, preoccupation of fear of recurrence and needing to find our ‘new normal’. And it all happens so quickly.
She said that she urges women to seek solace in humour through the rough stuff. To label the surgery ‘transformation surgery’ as it really is and does transform your body and mind.
Celebrate that you go from being a breast cancer patient/victim to a breast cancer survivor. Doesn’t that sound better?
Ms Shockney also mentioned that she’d known cases where survivors experienced pain or phantom limb sensation after surgery to remove the breast – but she said that with some survivors they’d been able to find a spot on the body that meant the sensation disappeared!
Redefine your intimacy, talk it all through with your partner and ensure that they are part of the process. Often when we’re unable to be sexually close, simply holding hands conveys what you’re feeling.
Partners often become owner occupiers for a while…
Oh and if you’re having chemo, organise a little party with your closest friends and have a coming out party for your hair before you start.
I think for the most part, for me, this workshop smacked me in the face and told me not to worry about it all so much. When I meet the right person, it won’t matter. Should I need further surgery or treatment, learn to laugh at the little stuff and the big laughs will follow. Find humour in the hardest of times. And rather than feeling that any change is a bad change, embrace the new chapter of my life and use the learnings.
11.45am – Don’t go – Sadly the time had come that some of Team Phyllodes had to head off to get flights home. I rushed up to the lobby after the workshop to find them all there, long faces (and a few hangovers). I was sooo sorry to see the first go, particularly Trish. She was the first person who retrieved me from cyberspace when I was searching for answers and someone, anyone, to talk to. The difference this made to me, my discovery, my recovery and now… I can’t put into words. The relief to know that I wasn’t alone and I could ask questions and she quickly put a shout-out for other Phyllodes survivors to friend me and I really felt that having felt so alone I suddenly had sisters out there who could pick me up and lend me a shoulder to cry on when I needed it. Since then I’ve tried hard to ensure that no one feels alone with this ‘rare’ illness – we’re not THAT rare (but we are of course, unique!)! So having this opportunity to meet and hug Trish and some of the others from cyberspace was something I will cherish forever.
12.15 – Closing Plenary: Resigning as General Manager of the Universe: Taking Control of your Own Health and Life – Kim Carlos
Kim opened her speech with words that resonated loudly with me:
“When you hear these four words “You have breast cancer”, you instantly feel alone. But I’ve learnt that I’m NOT”
She told of her story, of how she now uses every experience and learning to ensure that at the very least the message to women AND men, gets round, check your breasts. Don’t leave it to chance, you are your own medic… and remember that ALL the people at the conference were told at some stage ‘don’t worry, you’re too young to have breast cancer’… ooooh how wrong they are! In the UK we are lucky to get mammograms at 40, in the US they don’t get mammograms until they’re 50 and everyone at the conference was under 45 years of age!
She went on to tell of her journey with her new friends, of times they laughed, times they cried and times that should probably be confined to the conference… but you can read about it in their book “Nordies’ at Noon” http://www.nordiesatnoon.com/authors.html
Like so many of the speakers, survivors and hosts, Kim was keen to learn from her experiences and to use this for something better (and also to get away with a few things too) and Kim’s top 10 were:
10. I could say NO to the things I didn’t want to do and not feel guilty.
9. I could have a messy house and it was OK.
8. It was easier to raise money for good causes… a bald head helps!
7. No shaving, no razors, no waxing, no in-growing hairs etc.
6. Had a tummy tuck as part of her reconstruction surgery.
5. Got a new boob and a breast lift… for free!
4. Meals bought to her by friends and family which meant no cooking.
3. There was no such thing as a bad hair day.
2. Anything that didn’t quite go right, she could blame on “chemo brain”.
1. It made Kim realise the wonderful gift of life and made her cherish family, friends and life.
Kim’s recipe for survivorship
S – Support & Survivors and co-survivors.
U – Uncertainty that you will fill your life.
R – Resigning as general manager of the universe. You don’t have to be in control. You don’t have to be one that everyone comes to. Take care of yourself and let others take care of the universe. You can ask for help and you can accept the help given/offered.
V – Venture. Take a risk. Do something you’d otherwise never give a go. You can never fail, just learn and experience. You never regret something you did, just those things you didn’t do.
I – Information. What do you do with all the information and learnings you’ve got from this experience. Use them. Empower yourself, do something with it, use it! Become an advocate. “Be an active participant in your care”.
V – Valuing each and every day. (What are the things in YOUR life that you value? Do them).
O – Optimism.
R – Refusing to give up. And SURVIVING and THRIVING.
12:45 – 10th Anniversary Cupcake Celebration and Closing Remarks from LBBC and YSC
As the Conference closed I was incredibly aware of the amount of information, companionship and warmth that I had gained from the weekend… Somehow I was going to be thankful for the cosy atmosphere of the BA flight home to think through what it’s meant to me.
1:30 – After more sad goodbyes in the lobby, Jen and I headed out into the chilly Atlanta sunshine and were whisked off to Sue’s house for an American brunch. Yummy pancakes, bacon, strawberries, maple syrup, eggs etc. Awesome meal and fun walk in the afternoon with Sue, Paul, Jen and Sue’s children before Paul drove me to the airport and my long flight home.
During the course of Thursday and Friday we waited on calls and updates from a number of people as to their arrival times. Sadly one of the Phyllodes Team was unable to make it as her father passed away. Secondly another Phyllodes Team member was too ill to make the journey. And I’m quite sure there were many others unable to make the journey or for other reasons to miss out on such a wonderful conference. BUT Jen, an old partying friend of mine from my London days was, on Thursday, told her flights were cancelled from New York City due to snow. Her hubby was then going to drive her on Friday to Newark airport (a mere 10 hour round trip). But on the way to Newark they discovered that all flights were cancelled from there too. I think he knew just how important this trip was for Jen (and selfishly for me too) and simply said ‘well that’s it, we’re driving to Atlanta’… and he did – 996 miles each way! Jen too has breast cancer and has undergone extensive surgeries, chemotherapy and reconstruction and like so many of us young women has been hit hard by the whys and whats and wheres of this dreadful disease. Personally for me, it was great to spend time with Jen (although next time we’ll use a better reason) and also something so simple – to have someone with me at the conference who knew me BC (before cancer) whereas everyone else knew mebecause of the cancer.
So at 2am there was a little scratching at the hotel door and another of my oldest bezzie mates was waiting there – Hug time! After a quick catch up we both fell asleep ready for our busy day ahead – Saturday is the longest and fullest programme of events and we were both eager to attend as much as possible.
8am – Registering and Lei’ing Jen – After completing the registration formalities and ensuring that Jen had the correct Lei, we wandered through to the networking area, grabbing a quick breakfast bite and introducing Jen to my lovely Phyllodes Team. It was truly wonderful to have such a welcoming group and our group continued to welcome new friends into it all weekend.
8.30 – Welcome and Opening Remarks – Three speakers from Living Beyond Breast Cancer, Susan G Komen for the Cure and Young Survival Coalition took to the stand to welcome all participants and provide some insight into the weekend ahead, facts and figures about the conference. This was the 10th year that the conference has been held and the numbers get bigger every year. It also truly felt that the conference content was, in part, driven by the changing needs of the participants and ideas given to the organisers by the participants.
8.50 & 10.45 – Marking the Milestone : Sharing a Conference Story – The main seminars had small intervals where short stories were shared by survivors, predominantly about their journey but in some cases starting with the loss of sisters or mothers. These stories were enlightening and real. They were also a source of comfort and heartbreak, laughter and tears but always positive and motivational.
9am – Plenary Session One: Medical Update for Young Women – Julie R Gralow, MD
Julie presented to us on facts, figures, clinical trials, prognosis, improvements in the health service and soooo much more. Although a tough presentation packed with information about breast cancer (not Phyllodes) I felt better educated and more assured that so much is being done to fight this disease. All the time the odds are improving and the critical time for any recurrence or illness being pushed further away. Technology is assisting in earlier diagnosis and good drug testing and better medical practices making surgery and treatment easier and better for the patient.
Below are a few links to some of the resulting clinical trials and references to information that is still referred to. In particular in the US breast cancer patients are tested for dx21 recurrance assay (although not in the UK, as far as I’m aware). The information also advised, what we probably already knew, about a low fat diet, weight loss and healthy living assisting in reducing any further recurrence. In addition reference to increasing your vitamin D intake and ensuring that you take some level of physical activity after diagnosis.
Physical activity and survival after breast cancer diagnosis.
10:50 – Plenary Session Two : Young Women with Breast Cancer : Living Fully is the Best Revenge – Julia H Rowland
Julia asked questions in her presentation and then when I thought there were no answers, just questions, she said more and my answers fell into my head.
Cancer Care for the whole patient – Institute of medicine of the National Academics
20-30% of women treated for breast cancer have depressive symptoms within 5 years post treatment. It’s not unusual to feel loss/depressed quite some time after others may feel it’s all over.
There has always been a belief that there is a link between stress and cancer.. so try some of the below to manage your stress:
Disease free does not mean you are free of the disease. There is so much more to cancer than the surgeries and treatment.
Persistent affects:
Late and delayed effects:
Planning for recovery is important… plan for it
For every day since your diagnosis, allow as many days to recovery.
Ask your oncologist/medical team to provide you with:
National Cancer Institute – Facing Forward, life after cancer treatment
How do you make sense of it?
National Cancer Institute website pages which have an enormous amount of information for patients and survivors… http://survivorship.cancer.gov
What are my dates? Count your survivor date from the date of your diagnosis.
If you ever wondered why this disease affects some people or need a reason to believe that everything happens for a reason, I think back to when I was first diagnosed and when I first had surgery, lots of friends and colleagues justified it to me by say that things like this only happen to those of us strong enough to take it, I never really understood what that meant and sometimes felt quite sad that strong people would have to suffer more than anyone else… however…
“Women are like teabags, you never know how strong they are until you put them in hot water” Eleanor Roosevelt
My word, I’ve been in hot water and I’m feeling strong… bring me a cup of builders tea!
12.15 – Lunch and Learn. Introduction by Marcia Stein, Young Survival Coalition.
Taking Your Voice to the Next Level – Congresswoman Debbie Wasserman Schultz. Wow what a totally inspriration and motivational lady. I can so see why she made it in politics and gets things done. We were told of new and changing laws in the US relating to sickness, financial aspects and care. We also heard Congresswoman Wasserman Schultz’s own journey with breast cancer and how she kept her diagnosis quiet from Congress so that she would be taken seriously as a politician whilst she changed the rules.. and wow she’s done that and has so much more in the pipeline. Gosh if you’re reading this from the US and want changes or want to know what/who to support – this is your lady! (and I don’t even vote!).
And the main bill she’s involved in is The Early Act.
1.45 – Workshop Session Two – Your New Normal: Navigating Your Emotions Julia H Rowland.
There was lots within this workshop but for me, I found I came away with another question answered.
The person you were has gone. Acknowledge it and find your new normal.
What this really meant to me is that I, like so many others, have wondered when my life is going to go back to normal. Why I can’t suddenly remember what it was like before cancer. Why my outlook on life has changed. But the answer is simple and staring me in the face – nothing can be the same when you are made to consider the end of life. Once that reality is faced, you can start planning a future – it may be different, every day may be brighter or more special because you’d never thought that you might not live it until cancer; you can use every experience for good and you can look on trivial problems and wonder why before they would have worried you. Remember you don’t need to sweat the small stuff anymore! You can be positive about one thing – you’re stronger than you thought, you can smile and cherish life, love and your surroundings and you can bring sunshine to others.
4.30 – Workshop Session Three – Mindfulness Meditation – Michael J. Baime, MD The Penn Program of Mindfullness
Stress Management and Survival Anderson BL (Psychologic Intervention Improves Survival for Breast Cancer Patients: A Randomized Clinical TrialAndersen BL, Yang H-C, Farrar WB, et al (Ohio State Univ, Columbus) Cancer 113:3450-3458, 2008§)
Dr Baime firstly talked to us about the possible links between stress and cancer and demonstrated using data from previous trials how he believes there is a link and that we can assist in our health plans by managing or reducing our stress levels. He suggested many practical things that we should check/change such as ‘Do you have anyone you can rely on in your social network?’ Fix any gaps in your social network and help to reduce stress. This is not only when times are difficult but at all times. Are you able to ask for help when you need a small favour as well as a big favour? Remember that all the little things add up, so help others and let others help you.
He reminded us that the body and mind work together and that we should consider them both as a whole being. We often have a tendency to separate our thoughts from our actions but in reality they have a bearing on one another and should be managed as one.
Stress however can enhance function ie when you’re under pressure to get a task finished in time, the motivation of the looming deadline can enable you to finish the task. However stress can also reduce function ie you don’t take time to consider your options and rush in to do something quickly or forget vital pieces of information because your stressed.
Stress and its management
Event **********CRASH********** Reaction
Often stress will increase the size of the crash in the above situation, but what we really need to do is create some space between the actions and pause.
Event ***S***P***A***C***E*** Reaction
He then went on to explain the importance of breathing, taking time for ourselves and taught us some simple meditation exercises which allowed us to relax.
I can truly say that Trish and I floated out of this workshop!
6.00pm – Jen and I escaped the conference and headed out for dinner with Paul and Sue. Atlanta may have been confused by our little band of people as we’d not all been together for 18 years and all had English accents! We had a fab dinner in a little restaurant … I love the style of food in Atlanta, fresh, good food with a spicy southern twist!
9.00pm – Jen and I rejoined the Conference and Team Phyllodes for the 10th Anniversary Bash in the grand ballroom. We stayed a while but were flagging fast, a full day of a lot of emotions, giggles and enthusiasm and snuck off to bed at about 11pm… although some were seen singing karaoke at 5am in town!!! J
What struck me more than anything in the talks and workshops today and with the survivors I’ve met so far, is that we’re all positive and we all know how to look at our situation and find it funny. You wonder how but each and every person has a story about their cancer and you laugh with them… really laugh. I know the NHS are running pilot schemes about the advantages of laughter therapy and I also know that if the NHS’s decision makers spent a few minutes looking around and listening to those attending and speaking at the conference, they would truly truly find the investment in this program. So yes, finally I do get the joke my ex-colleague posted whilst I was having surgery on my right boob – “I do feel like a right tit”!
Today I’m anxious and I’m quite sure my blood pressure is through the roof. I can’t help but wonder if the pathology is in and if I’m going to meet with a new consultant to hear results that I don’t want to hear. I know that my head has been in a terrible place this past few weeks but is my head right? I left heaps of time to get to the hospital and arrived in South Kensington over an hour and a half before the appointment was due.
South Kensington/Chelsea was a little bit of my stomping ground many years ago and a lot of stories/memories (fortunately) have been long forgotten about those times. I wandered slowly towards the Royal Marsden past Pond Place, where I had my 25th birthday party in a basement bar – what a fantastic night (remember? – Jax/Melissa/Mark/J. Sadly the bar is long closed and in fact there are weeds trailing down the steps and if it hadn’t been freezing and icy, I’m quite sure I would have heard the tumble weed roll down the roadway (instead of the ‘Oi – I fink it’s closed’ from the workman the other side of the road!). I looked back up the road and remember evenings at The Collection or lunches at PJs with the med teams of the Chelsea & Westminster on Sundays… ooh so many good times.
I haven’t mooched around this area of years and it was with mixed feelings whilst looking back upon some wonderful times/memories and looking/hoping that there’s a future which will enable me to create more wonderful memories.
After a short wait in the hospital waiting area of the ‘Wallace Wing’ (errr did they name it in anticipation of my arrival?), I was taken into a consulting room and left to strip off to my waist and put on one of those gorgeously sexy hospital gowns! After an examination I was told by this Snr Consultant that she was extremely impressed with my surgeon’s handiwork and was satisfied from this ‘manual’ exam that there was no worrying lumps or bumps. She did also confirm my anxiety about there being a difference in size after the two operations but that could be fixed at a later stage, if I wanted.
She then asked what questions I had and looked a little askance when I pulled out my folder and notebook! When I apologised about having the questions it was wonderful to hear her say that I should ask questions and should make sure that I have the answers and should research Phyllodes tumours and should take control and own my health. Having a rare cancer has taught me that I cannot sit back and take comfort in previous cases or well-trodden medical surgeries or treatment paths – there are none.
So for other Phyllodes survivors the answers I got were:
Sufficient clear margins – There is currently no recommended measurement of sufficient clear margins however the margins that were taken she believes are adequate. 4mm with a clean surgical removal is sufficient.
Hormone negative receptors, do they have any bearings on whether a recurrence will appear? – I discussed that I had read that there may be a link between survivors with negative hormone receptors (ER-/PR-) being at higher risk of a Phyllodes tumours. My consultant advised that, for Phyllodes, she is unaware in the UK of this being researched and pathology is not tested for hormone receptors. However she will pass this information to the research teams and suggest that any Phyllodes pathology is tested to see if there may be a link. (There are links with other breast cancers and hormone receptors)
Pathology – I neglected to ask if my pathology had in fact been re-examined however am satisfied that should they have felt it necessary they would indeed have ensured it had been.
Stabbing/pinching pains, why? – My concern was that the pains I’ve been experiencing are sharp and similar to the pains I was getting when I had the tumour (although the skin isn’t hot to the touch now). I was worried, of course, that the tumour was back and growing again. Or that I may, as other Phyllodes sister had been told that I had ‘Mondor’s Disease‘ which although sounds scary will pass in time with massage and pain relief. However the consultant told me something that I really didn’t know – breast tissue is similar to a memory foam mattress (my interpretation not hers!). Apparently breast tissue will remember what a feeling/pain was like and mimic this at a later stage. In my instance where the tissue is reshuffling and the scar tissue shrinking, the most recent memory feeling it has is the pain I had during the tumour growing and therefore has learnt to replicate that pain. Apparently women who breastfeed can often experience the feeling of breastfeeding many years later. For me and I’m sure others who have undergone soft tissue surgery, it’s worth remembering and although it doesn’t negate the need for vigilance to check for recurrence, it may be just remembering the sensation of pain.
Pain also in the left breast – The consultant was able to assure me that there were no lumps or bumps to be concerned by (from the manual examination) and perhaps the pain is simply hormonal or the left breast has gone out in sympathy with the right!
Recurrence – We discussed the potential of a recurrence given that I had a malignant Phyllodes tumour. What are the odds and are there any details on how long I may have before a recurrence occurs. The consultant said that the first two years were the highest risk and therefore we would ensure that there was an adequate follow up program in place to pick up any oddities quickly and also put my mind at rest that I’m not waiting long. She also assured me that should I feel worried by pain, lumps or generally, then I should call them immediately and would be bought in for consultations and testing urgently.
Radiotherapy – We discussed further my thoughts on pursuing radiotherapy at this point. Since my original request for this to be considered I have researched this further and also spoken at length with the radiotherapy consultant.
One very interesting point that I had not been aware of is that radiation on a soft tissue sarcoma may induce further recurrence. There are no stats for this but it is believed to be a concern therefore I’m now not convinced that this really would give me a 20% better chance. I have chosen to leave radiation until I really need it and to consider further surgery, more drastic surgery, before any radiotherapy is undertaken.
Grading of malignancy – In the US Phyllodes tumours are graded, in the same way that other breast cancers are graded, however in the UK I have found no grading or staging. I asked what grade/stage my malignant Phyllodes tumour was and if this classification may have any bearing on any potential recurrence. I was told that grading/staging is not done in the UK.
Metastasing – In the UK they believe that there is a very low risk of a Phyllodes tumour metastasing to other soft tissue areas of the body. Sadly, I do know Phyllodes survivors in the US who have cancers in other areas however wonder if these cancers are related to metastasing. With the regular checkups and me being vigilant I am hopeful that this will not affect me.
Tamoxifen – There is a school of thought that Tamoxifen may assist with Phyllodes survivors (or other soft tissue sarcomas) to reduce the risk of recurrence. This is a drug used regularly for breast cancer survivors. We discussed this as a potential option for treatment for me however there are a number of side affects including blood related issues. I weighed up the potential reduced odds of recurrence -v- my concerns about having any more blood clots and decided that the risk, for me, was too high to try for a maybe. However for others this may be of interest.
Is 10/mm2 mitotic count high? – The mitotic count in the pathology of the first excision indicated that it was 10/mm2. My research identified that this was high and in data received from Australia indicates that once again this may be an indicator of high chance of recurrence or early mortality. I was assured that this wasn’t the case as far as the UK are aware and satisfied that, once again, with close surveillance and regular checkups I wasn’t going to let it either!
Did the reconstruction during surgery 1 create a new network for the Phyllodes tentacles? – In short No. It was the right decision by my surgeon and has meant that the cosmesis is retained as best as possible.
Mastectomy or more surgery – No further surgery is required at this time (unless I chose an elective mastectomy). However should there be a recurrence or any concern about my future prognosis then I should, as well as I can, prepare myself for a mastectomy. I was ‘warned’ that if anything was discovered I would be whipped in and my breast whipped off before I could blink, therefore it is advisable for me to consider what I would do, how I would handle it etc etc and to be prepared. I believe that I’ve done all the preparation I can do until it actually happens.
NHS classifications for Phyllodes – I discussed my concern that the NHS does not classify Phyllodes within its database and more particularly that we surely can’t confidently say this is a rare cancer or doesn’t affect many in the UK if there’s no way of recording or reporting on it. I mentioned that I had established the coding in the International Classification of Diseases and wondered if/how I go about getting it considered for inclusion in the NHS coding. My consultant agreed that this was a ridiculous situation and would do her best to ensure that the NHS were provided with the correct coding and include this as soon as possible. I will, of course, ensure that my medical notes are updated to reflect the code as soon as it is within the NHS database.
M9020/0 – Benign – D24
M9020/1 – NOS – D48-6
M9020/3 – Malignant – C50-
I was also able to advise the consultant that I was to attend the Conference in Atlanta and she was keen that I should feed back to her anything I felt of interest/research/investigation from the Conference or my own research/enquiries. I would like to think that I can bring back to the UK information from the US and that this information is disseminated to medical staff so that the awareness of Phyllodes is raised. If more Phyllodes tumours were diagnosed quickly, patients may only need one surgery (instead of the standard two) and more research may be given to this type of tumour. She also advised that she would email me with any information she finds in her efforts.
I left the Royal Marsden with a spring in my step and feeling positive about my future. Nothing had changed since my going in but I had been able to ask questions, be given honest answers and then to formulate my own decisions based on good advice. I knew when I left the hospital that I cannot say I’m cured or I’ve got the all clear but what I can say is that I’m in control of my future and my care management. I have the support and, I believe, high regard of the medical teams that I’ve met – to me this is important as it has meant that my concerns are taken seriously and they know that I don’t panic about my diagnosis and prognosis but rather want the evaluate and understand my health plan.
If nothing else, I would like to think that my journey and inquisitive approach to my diagnosis has, in some way, helped raise awareness, reporting, data and research but also provide a supportive hand to others.
The reports that I have read and the stories of survivors is that if this type of tumour does recur it is more aggressive in the recurrence and that there are a lot of recurrences. Recurrence can also be within a few months of a complete excision with clear margins. You see that’s the important bit, a complete excision AND clear margins as the first step and, as I said before, some experts recommend adjuvant radiationtherapy after the excision to reduce the risk of recurrence. The rough statistics are that this may reduce recurrence by 20% which doesn’t sound very much and has to be weighed up with the risks associated with radiationtherapy but I’ve done this and, although I would like to discuss it in more detail with a radiation expert, I believe I’ll take whatever I can get at the moment to increase the odds!
The problem is that as I’ve said before there is little information or research available about phyllodes tumours. In the US they estimate that there are no more than 500 cases per annum which if the population is 304,059.724, is such tiny numbers… you work out the stats! In the UK there aren’t any numbers as phyllodes tumours aren’t even coded in the NHS system so you’d be unable to search against the database and find numbers or indeed cases to which to refer! So I do understand that there is limited information and that the limited resources and research allowances in our medical fields are spent on the more common diseases and illnesses.
Why do I need to tell you all this again, my phone call yesterday from the hospital left me confused and concerned. My usual nurse is off sick and the call came through from another nurse who said that they had had their group meeting to discuss the DCIS. They were happy that they had clear margins on
Whilst I wait for Tuesday to arrive, I thought I should use today’s entry to remind or tell anyone who has come across this site in a search for answers or support relating to their own (or someone they know’s) diagnosis of phyllodes tumours. As all of you will know who have read this diary or been with me through this journey, this is why I wrote this site – my own frustration at not being able to find information and more importantly feeling alone in my diagnosis. I have learnt that there are others diagnosed with with phyllodes tumours and like me, they’re survivors. There remains little medical information on our unique and special type of rare cancer but that it’s not an impossible search – there IS information out there and there are people (very special people) who you can ask. Often the questions I wanted to ask or needed to know the answers for were ones that surrounded my anxiety more than a medical response or just simply needed someone who knew to hold my hand on that part of the journey and tell me ‘it’ll be OK’. I am incredibly lucky and thankful for the band of phyllodes sisters who have supported me, answered questions or whoop whooped sufficiently to make me believe I can beat it – with a giggle and laugh too. We also have all, through our own journey, found resources, papers, websites, doctors, oncologists or each other to answer questions. Please don’t struggle on your own. Reach out and we’ll catch you.
My first breakthough was registering with Rare Cancer Support Alliance and introducing myself on the Phyllodes forum and quickly receiving responses. I also read though different discussion threads and then researched links to other papers or where another hospital is mentioned looking through their website for information. From the support alliance site, I found Trish’s blog and contacted her. She then invited me to ‘friend’ her within Facebook. I then discovered that Facebook (which most of consider a bit of fun or somewhere to a timewaster) can also be a powerful tool and link. There are some groups which I’ve joined “Phyllodes Support Group” and “Phyllodes Tumors, CystoSarcoma Phyllodes, whatever the hell it’s called” and “Rare Cancer & Tumors” – all of these groups are supported by a number of Phyllodes survivors who in turn are able to share support and information with each other and regularly chip in on my wall or status to give me a nudge of support or laugh at find humour in our shared experiences.
What I really discovered was simply that I wasn’t alone. Being diagnosed with phyllodes tumour is rare but not unique. There is no hard and fast rule about phyllodes tumours nor how to treat it because there are no reliable studies or research on it – mainly because the numbers of us are so small but by talking to others we can help make the right decisions for us, when the time comes, and importantly without a knee-jerk reaction to theunknown. The questions I wanted answering had one by one (mostly) been asked before and they, my fellow survivors, could help me answer it or help me find my answer. I shall not deny that I wish there was a medical casebook to which we could refer with our ‘what if’ and ‘what next’ questions and simply turn to the right page for the answer.. but there isn’t… or at least there isn’t yet! Perhaps together we can provide some more statistics, some more results, some more facts and THEN maybe there will be more research and studies performed so that what we have won’t be so rare… In the meantime remember no matter what you’re not alone, you just have to ask. ♥♥♥
I had lunch with my big brother and his family. My youngest brother is visiting from Glasgow and my Dad and stepmother were also there. A really lovely meal with family chatting about life, Mum’s death and my illness but mainly just being together. After lunch I (as well as my neice) had to have a nap and then headed home after being beaten at backgammon! My little brother and Iola (one of my neices) came back with me, which was a relief as my bro was able to help unpack all my bags and ready my house for my return – I’ve not been home for 10 days or so!
3 more sleeps until I hope to hear from the hospital following their group meeting and receipt of the full histology report. It’s funny (and boy have I had to find a funny bone or two through this journey) that once again I’m waiting for results or news. I keep running through the last meeting with my consultant where he started the conversation with ‘I don’t believe you need any more surgery, at this time’ and went to to discuss considering mastectomies ?!? Millie and I exchanged confused expressions and listened intently to him then telling us that they had found this ickle DCIS (albeit low grade) and outlined what the course of action would be/have been, if they had found it on its own merit rather than as an aside to my phyllodes tumour. It wasn’t until we got home and researched further what a DCIS was and how it is treated (and whoopi-do there is information on this on normal C websites!) that the conversation and the necessity to discuss mastectomies fell into place. I was however assured by his comment that he believes I don’t need any further surgery at the moment. The very thought of going through it all again fills me with dread – I’ve done it twice and want to get off this fair ride!
But as ridiculous as it sounds, whilst I’m hanging on to the positives (that they believe they have the entire phyllodes tumour and got a clear margin), there’s that nagging in my mind about the DCIS, if they got it all and what this really means. You see if they had found that on its own, MOST people would have surgery to remove it and a clear margin to ensure that it didn’t turn nasty. However my thinking is that I’ve had enough and am going to be closely monitored over the next couple of years so that IF it should turn nasty they will know about it before it takes hold… but is that just me trying to avoid more surgery. Is that what they will recommend when they get the full histology report back and the professionals have seen all the medical info? I don’t know.
There’s also the question of to radiate or not to radiate. As I said earlier there are two schools of thought as to if radiation therapy will reduce the risk of recurrence of a phyllodes tumour. For obvious reasons I want to reduce the risk of recurrence by as much as possible however there are risks to having radiationtherapy in itself. Would radiationtherapy assist with nuking the DCIS also or might it irritate it, if its not been totally removed? My mind’s a-whirling when I should be celebrating that they say they’ve got the phyllodes tumour, but I can’t quite yet, or not all the time.
I also know, sensibly, that my team at the hospital will give me the best possible advice on more surgery or future surgery and that when I have my appointment with the radiation oncologist they will also be able to advise on the risks involved so that I can weigh it up but I can’t help but wonder when it will all be over…
Antibiotics have done their stuff and the infection has nearly all gone (evil side affects though!) Leaving shortly to get through the roadworks to the hospital in good time for our appointment at 2pm with the consultant. I’m feeling quite positive about it though (which is good) as, apart from the blip with the infection, I felt good straight after the last excision and have had no more shooting pains since. I don’t know but my money would be on the blighter having growing pains.
Fingers crossed and I’ll update you later… Put that champagne on ice.
Update – We’ve seen the consultant and I’m finally out of detention(ish). He confirmed that he was happy that he had now removed the entire phyllodes tumour AND got a sufficient CLEAR margin. He’s referring me to the radiationtherapy unit who are based at a different hospital to talk about available follow up treatment.
There are two very different schools of thought about the necessity of this additional treatment – essentially because there isn’t enough data to be examined or clinical trials run upon which to rely! However I have taken the time to review a lot of medical journals and articles (as I am sure he and the team have) particularly the following reports from which I have extracted part of their ‘conclusions’. The report written by Richard J Barth in the Annals of Surgical Oncology (2009) 16:2288-2294 – “Margin-negative resection combined with adjuvant radiotherapy is very effective therapy for local control of borderline and malignant phyllodes tumors. The local recurrence rate with adjuvant radiotherapy was significantly less than that observed in reported patients treated with margin-negative resection alone.” and the European Society of Therapeutic and Oncology October 2004 – “While benign tumors have a good prognosis after surgery alone, adjuvant RT is recommended in the management of malignant and borderline tumors.”
Given the above reports (together with other reports I have seen) I am hoping that the radiationtherapy will be given – sounds totally weird to say ‘hoping’ but I really don’t want to do this all again and have more Thursday surgery! I’ve pretty much worked my way through the hospital’s thursday evening meals and not sure my tum can cope with a repeat of any of them!
BUT (and there had to be one, well actually two BUTS to the above good news)… the full histology report isn’t yet back. The reason this is important is two-fold. Firstly that I can be totally happy that they really have got the whole phyllodes tumour and any ickle sneaky tenticles too (although they seem confident of this with the part report they have). Secondly, they discovered a really incy wincy (my words not the consultants), pre-cancerous DCIS. The consultant made the valid point that in recent years there have been lots more of these DCIS’ found but they believe this to be due to the new technology rather than an increase in them existing. He also said that had we not had to just go through everything with my phyllodes tumour, I might never have known nor needed to know as it could exist without ever turning invasive, but that there’s always a risk. Explanation as to what a DCIS is – Macmillan – DCIS. Yes they did laugh at me once again being individual and different ie having both types – I like to think of it as being ‘unique’!
The team, consultant, Macmillan nurses, oncologists etc etc are going to have a group discussion at their weekly meeting about me, my phyllodes tumour, possible chance of recurrence and in addition the DCIS on Tuesday following which they will call me to discuss further options. They will prior to this meeting have the full histology report. I however am, at this moment in time, quite calm about it and happy that I might never have known about it and that radiationtherapy may well nuke it at the same time, or indeed that they managed to cut out the whole DCIS with the phyllodes tumour and have obtained a clean margin on that as well. Here’s hoping.
I’m also so very impressed with the honest approach that I received from the consultant and my Macmillan nurse and reassured that they are offering me the best possible advice and treatment but also allowing me to make informed choices about any next steps, be that more surgery or alternative treatments. I also feel comforted that they will keep a very close surveillance on me over the next few years (in two months time and then every 6 months with MRIs, mammograms and ultrasounds) and then just annually, should nothing recur. I have been incredibly lucky with the team that have been looking after me and intensely grateful for that assurance.
I’m very much looking forward a glass of champers to celebrate the good news that I got today… join me?
PS friends/family I’ve not told Dad the last bit of this but only that they’re happy that they’ve got the phyllodes tumour and I will have radiationtherapy… just in case you’re in touch, please don’t tell him – he doesn’t need to worry any more!
Brief update today as it hurts not to be curled up in a ball on my side… the lovely side affects of the antibiotics so have been kept awake by cramps and raging hot flushes all night – mmmm nice! However the infection does seem to be disappating slightly (at midday) so they seem to be doing what they’re meant to do.
Tomorrow I get to go back to the hospital for the test results of the lump – hopefully will be saying they have got it all and clear margins and we can then work out what treatments required to reduce any recurrence. They can also have a look at the infection!
Nigel collected me at 6.15am following a sleepless night and delivered me to the hospital in good time by 7am. He didn’t however leave me at the main entrance this time, insisting that he stay with me for as long as possible – so I didn’t escape out of the back door or locate the fire escape! Everything seemed so quick, visits from anaethesist, consultant, trainee doctors etc etc and before long I’m in the operating theatre having the canula inserted. As per, I didn’t even get to count to 1 before I’m being woken up in the recovery room and back on the ward for elevenses. Although I didn’t know what they had done, I did have a drain which meant that I knew there was a cavity – a tube is attached to ensure that blood and fluid that might build up in the cavity is drained away. Ironically when I was for Op 1, I had been very smug about the fact that I hadn’t had a drain – serves me right this time round!
I managed to get a few hours sleep during the day which I was so very grateful as I had an incredibly uncomfortable night. My drain was pulling on my wound and didn’t feel right at all, I had sharp pains in both breasts throughout the night and to add insult to injury ended up having an ultrasound at 1am as my tummy was bloated and a catheter finally being successfully inserted at 3am. Not a great night and made slightly more anxious about whether I was going to be discharged tomorrow or need to spend a further night in hospital.
We were however in a prime spot for the fireworks and yours truly had a window-side bed, so a perfect view over London for Guy Fawkes night – at least a little compensation.
I truly hope this is the end of it and I don’t have to go through another operation… let’s hope the removed tissue shows clear margins.
AnnaGoAnna Wallace 