Tag Archives: Sarcoma

Follow up appointment

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This morning I attended the breast cancer clinic for an appointment following my recent biopsy.  As in the previous posting the pathology indicated that the ‘dots’ weren’t anything to worry about.  However I felt that I needed to understand why they had ‘suddenly’ appeared (they weren’t on previous mammogram); what they really are; are they connected to the sporadic breast pain; and, of course, truly believe that they weren’t the start of something more sinister.

She explained that the dots were calcifications which are small spots of calcium salts.  Calcifications develop naturally as breast tissue ages however can also form if there’s been an infection in or injury to, the breast.  The concern though is that sometimes they  form because of other changes in the breast such as a cyst or fibroadenoma or as an early sign of breast cancer.   (Breast Cancer Care have a leaflet which explains in more detail – here)

Because of my history of malignant phyllodes (which initially biopsied as benign fibroadenoma) and of DCIS all of which were removed in 2009, there was a concern that these new dots may well be indicating something awry.  Fortunately the pathology and consultants believe that these are purely calcium salt spots ie nothing to worry about.  That said, they were keen to ensure that I continued with my regular check up regimen so that any changes will be picked up early.

Next screening scans are booked in for January 2014… Bubbles anyone?

Sarcoma Consultation

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This afternoon I met, as planned, with my sarcoma team for the results of my six monthly checks from the perspective of phyllodes sarcoma.  They will, of course, be involved in reviewing the results of the biopsy however were keen to let me know what they know, so far.  Good news, there was NED (No Evidence of Disease) in my lungs from the chest x-ray and no evidence of any sarcoma growth visible from the ultrasound and mammogram.

I’ll best get on with healing from the biopsy which now the anaesthetic is wearing off is mightily ouchy! Thank heavens for paracetamol.

Next appointment 22nd July.

6 monthly checkups

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A wonderful visit to Belfast to see Johan Gant and Nikki Tweed become Mr and Mrs Gant on 4th July.  Fabulous day and so pleased Johan was able to source and I was able to secure flights to enable me to be there between medical appointments.

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This morning, I was up and out of the hotel in Northern Ireland at the delightful hour of 4.45 A.M.… a time that I’ve not seen for quite a while!  Quick dash to the airport, a small flight to Gatwick, train to Clapham, bus to the Kings Road and then a short walk to the Royal Marsden Hospital.  Whoohooo I even managed to do all that AND be early for my appointments.

You see it was my six monthly checkups today.  My July regimen is ultrasound, mammogram and a chest x-ray.

There has been some discussion within the medical world that checkups are unnecessary, worrisome to the patients and costly to the NHS purse.  It’s been suggested that perhaps cancer patients should have less frequency in checkups.  Or no checkups at all BUT rely on patients raising concerns or with ‘quick access’ back into the system should we find any lumps.  This CANNOT happen.

I’ve been fabulously fortunate in that my medical teams have advocated for me to have a thorough checkup regimen agreed.

Today I was grateful for their professionalism and care of my health and these regular checks.

My mammogram slides have shown some spots that need further investigation.  The radiologist doesn’t believe that they are more Phyllodes tumours but suggests that they may be a scattering of DCIS (ductal carcinoma in situ). Because of the location of the ‘spots’ she has suggested that I come back for a stereotactic biopsy where they will be able to suction out several tissue samples.   I will hear next week about a date for this biopsy but expect it to be in the next week or so.  Following the biopsy, the samples will be sent to the pathologists.  Then the MDT (multi-disciplinary team) will assess the results and advice what the next steps are.

I’ll keep you posted…

Text to a friend

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Whilst away at the European Sarcoma Conference I knew something wasn’t right.  I think I knew that Tish would be protecting me whilst I was overseas.  She fully supported my being involved in conferences, boards, cancer networks etc so wouldn’t want to burden me whilst I was abroad.  But I’ve had this dreadful feeling all day.  Below is a (long) text message I sent to a friend:

“I need to run something by you. I don’t know that you’ll understand nor that I’ll be able to tell you all I need to say but I need to know I’ve tried and need to know you’ve listened.

You may remember me talking about the ‘champagne and shoe’ girls. A little band of cancer warriors, Kerry, Letitia and I. Kerry and Tish had ovarian cancer and I was introduced to them quite some time ago but we hit a chord and just ‘got it’, ‘got each other’. No matter how bleak a prognosis or indeed how bleak we felt, we’ve been able to spark each other, support one another, have a laugh and look beyond.

This time last year Kerry passed away. I had the call from Tish at this conference in Berlin and my heart broke just a little bit more. Kerry was always so strong. We had a giggle. We both enjoyed bubbles and we also enjoyed the same shoe collection and spent an hour or several trying on new pairs.

But Kerry was truly Tish’s support. They both had the same diagnosis and a similar prognosis. Tish and I have been close this last year and there have been many times when she’s been feeling down or I have, we’ve met up, put the world to rights and left back in our positive places. Some times we’ve not managed to meet but talk by text. Tish has been very poorly but after living her life and going to Australia embraced life once more and foiled the experts with a change in her prognosis once again.

She’s recently taken a turn for the worst and I saw her last a few weeks ago when she was a shadow of her former self but still had a smile and a hug for me.

She was admitted again to hospital a week or so ago and we’ve texted. The last texts written by her 22yo daughter last night.

I don’t know what to do. I’m being told by text that she’s weak but ok. But I fear the worst. Selfishly. Wonder how I’m going to cope without my rock to meet with at my bench or text or talk with. Somehow the world is so much better when Tish makes it better.

I’m so scared and don’t want to be the last champagne and shoe girl here. They both had a husband or daughter in their lives and I don’t. It makes no sense.

I’ve got a couple of missed calls and voicemails on my mobile but my PIN number doesn’t work so can’t pick them up… Please tell me they’re from you?

Not really sure if I’ll send this or if you’ll read it… Or what I want from writing it. I just know I want Tish to prove them all wrong and grow old being cantankerous and naughty with me.”

All change

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In my posting in July I mentioned that I had asked my wonderful consultant about referring me to The Royal Marsden hospital’s sarcoma team for my follow up surveillance.

At 2pm today I had my first consultation appointment with the sarcoma team at The Royal Marsden. The waiting room was absolutely packed and I waited nervously for my name to be called.

I was concerned that they wouldn’t take my case on but that I had sort of ‘discharged myself’ from my previous consultant’s care. I was worried that they would perhaps think I was over anxious about follow up scans or perhaps that they would recommend I stay with my existing hospital. I was concerned that although they are a centre of excellence for sarcoma in the UK, that the person I was assigned wouldn’t know about Phyllodes – after all there are over 70 different sub-types of sarcoma.

So despite my waiting only a very short time, I was more than a little anxious. Had I made the right decision in asking my lovely consultant to refer me? Would he take me back if I hadn’t? What would I do if they didn’t take me on as a patient? What would I do if they changed my follow up surveillance schedule in a way that worried me more?

Phew, I’ve been called.

I first met with the nurse who explained what would happen and who I would be seeing. She then left me in the little consulting room whilst I waited for the Registrar. Seemed like ages and once again all my anxieties were kicking in. The Registrar then arrived and ran through my medical history and also asked about my siblings, parents and grandparents’ medical history. She also told me that my case had been discussed at today’s MDT (multi-disciplinary team) meeting in detail.

And then, she asked the question that I was most worried about answering… why was I here and what did I want from the Royal Marsden? So I told her why (see previous post) but I also told her about our Facebook “Phyllodes Support Group” and what I’ve been doing with Living Beyond Diagnosis. She asked a few more questions and then said she’d return with the consultant.

I was then left in the little consulting room on my own… and yes the little voice in my head was once again telling me that they wouldn’t have me as a patient etc etc.

I was terrifically grateful when the door opened once more and the Registrar came back into the room accompanied by a consultant. He introduced himself and we spoke briefly about me, my medical history, why I requested the referral and my previous care.

He then asked more about the Phyllodes Support Group and was terrifically impressed with the number of members, the information and experience sharing, the documents and reference papers that have been collated and also the polls and data that we were collecting and sharing within the group. He also said that he felt that should we, as a group, wish for some assistance or input for the group, then I should just ask and he would try to facilitate this for us.

I was also able to tell him about the report that is currently being finalised containing a section about Phyllodes from the contact I have met at two Cancer data conferences in the UK. He would love to see a copy of this when published.

It goes without saying that I will be looking at what input will be useful from RMH and also what we can provide to RMH from the group… certainly it would be fabulous to have a medical facility, who specialises in sarcoma, to take an active interest in the group members and their health. Watch this space!

We then returned to my health and monitoring for recurrence or metastases from the excised malignant phyllodes tumours. We agreed that my previous consultant had done an excellent surgical job in removing both of the tumours and then ensuring that sufficient clear margins were obtained. He agreed with the advice that I should not have any adjuvant radiotherapy at this time. He also agreed that the screening regimen implemented in my previous hospital was the best to quickly identify any local recurrence (together with my own personal checks). We then spoke about any requirements for any additional screening/surveillance for possible metastases, particularly with regard to the malignancy and mitoses of the excised tumours. He suggested and has requested that I have a 6-monthly chest x-ray at the same time as my existing scans ie annual mammogram with intervening 6 monthly ultrasound of both breasts.  This chest x-ray will be looking for any traces of naughty cells in my lungs.

I left RMH this afternoon feeling that I had made the right decision to ask to be referred. Perhaps I should have made the request at an earlier stage and saved myself some levels of anxiety along the way.  But I also know that I couldn’t have managed to do that before now.

I am, of course, sorry that I won’t be hearing my, now previous, lovely consultant refer to me as ‘Miss Lumpy Bumpy’ again but I’m so very grateful for his care up until now and can only say that whoever the patient is who gets my slot on his busy schedule is a very very lucky lady.  Perhaps I shall pop in with a box of biscuits for him and the team when I’m next passing my old hospital.

So that’s it. Next scans/checks are in January. Between now and then I’ve got a number of cancer conferences to attend, not least the annual Sarcoma conference which this year is in Italy. They were asking for patient advocate attendees to speak at the conference and I’ve put my name forward.  I would love the opportunity to tell them all about our Phyllodes Support Group and also about Phyllodes itself, in the hope that perhaps more medics and researchers will be more aware and knowledgeable.

Whoohooo, the results are in and it’s good!

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I can’t tell you how sick I felt today going to the hospital. Why? I should be used to it by now. … shouldn’t I? The anxiety levels were through the roof as I tried to find a parking space in the car park. As I was cutting it fine, arriving only a minute before my appointment time, I decided to only buy 1 hours car parking (at a mere cost of £2.20/hr). Rushing across the lengthy car park and nearly coming a cropper as I missed a pavement, I rather launched myself into the clinic!

After checking in, I settled down and waited. And waited.

I realised though that actually I’d been spending far less time in this particular clinic of late… well there were magazines I’d not read, so that’s got to be a good sign. Right? They even had the latest Vita, which is a magazine produced by Breast Cancer Care and a wonderful source of information and support for anyone with primary or secondary breast cancer (and their carers).


I was also super-chuffed that there was an article about David Jay and The Scar Project. Love that project and am so honoured to have known Jolene and others who have taken part and shared their journey through the images. Incredible.

After an hour, I rushed out to put more money in for another hour parking…. And of course half way across the car park the heavens opened!

Seriously though, the cost of car parking in hospitals is absolutely mental and for those of us who have to visit hospitals regularly, is a real cost burden. As I made my way back to clinic in the rain, I thought I’ve probably had over 50 hospital appointments since 2009 and each of them cost roughly £4, that’s £200 I could have spent on champagne!!! (Oh I mean saved for a rainy day)

Anyway I think the trip to the car and my attempts at mathematics helped me get some perspective about my appointment. It wasn’t long afterward that I was called in to see the consultant and get my results.

I was shown into the ‘good room’ (ie not the room of doom), which helps enormously. A few minutes later, my consultant appeared with a smiley face and welcomed me warmly. Seriously, if there are any medics reading this, you could really learn from this man – how much easier is an appointment and our anxiety levels when someone is genuinely warm and welcoming?

We had our usual little chat, he told me I was looking well (another point for the medics!). Although to be fair, I’ve also learnt that I need to make the effort when I’m anxious.. always matching underwear, shoes, nails, hair done and make up applied.

We then talked some more about Phyllodes, what it is, what I’d learnt, what he’s learnt and what he’s telling his trainees. It’s always so encouraging to think that by my diagnosis and it being weird and rare, he’s taken that (and with my encouragement) and ensuring that there are going to be some medics of the future that know a little bit about it. I always hope that they get eager to learn more.

Next the manual examination. Once again I could commend him on his surgical handywork. The scar tissue is getting less and the excision site becoming more even. We talked about ‘evening up’ by surgery and it’s good to know the offer is there and he’d do a fabulous job… but I’m not ready for surgery again anytime soon.

Then I broached the ‘difficult subject’. As you will all know from reading my blog, I can’t be any happier with the way my consultant has looked after me, managed my case and helped me through this, supporting me every step of the way. However there have been the blips with the radiography department where they don’t necessarily understand about Phyllodes nor feel checks are necessary (or as has been mentioned “it’s not as if you’ve got breast cancer”!).

Anyway, the bottom line is that as someone diagnosed with Phyllodes, a rare soft tissue sarcoma, my case should have been referred to a sarcoma specialist to manage. However I’ve always been more than a little anxious to leave the fabulous care of my consultant. I still am.

But today I asked him if I could be referred to the Royal Marsden in London for my follow up regimen. I explained why I thought it was important to be with a sarcoma team and also a team that I know have other Phyllodes patients and understand them and the best treatment etc. I also told him that I was sorry I couldn’t still be seen by him sometimes! It does seem right though that I move on and my place in the breast cancer unit is indeed filled with a breast cancer patient. He’s a truly wonderful consultant and surgeon and whoever fills my slot in his busy schedule is indeed a very fortunate person.

He agreed that this was probably the best thing. However has said that if ever I’m worried or he can help in anyway, then to give him a call.

As I left, he put his hand out to shake mine and then laughed and said he felt it more appropriate to give me a hug!

On the way home in the car I shed a tear or two. I’m not sure if it’s because I’m scared if I’ve done the right thing. Am I leaving someone who I knows cares about my wellbeing and health and stepping into the unknown or am I leaving him but going to a more specialist unit that will be able to add Phyllodes expertise as well as care?

I hope I’ve done the right thing.

Sarcoma Awareness Week

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This week is Sarcoma Awareness Week.  I wonder if you knew that?  The problem with being a rare cancer type is that even if you have an Awareness Week, you’re only a small voice in the big noise of life.  Even if you are able to get others to share the awareness and retweet or repost about it in their own social networking, how many people actually read it or look at links?  However I, for one, have tried to share the word.  I’ve taken Sarcoma UK leaflets into hospitals and GP surgeries.  I’ve even taken to leaving a few on seats of trains or tubes or buses – and loved it when people pick it up and read it to fill a few minutes of their journey.  You never know but what they read may well help someone else or themselves understand a sarcoma diagnosis.

So, I’m going to give you just a few facts about Sarcoma (extracted from Sarcoma UK’s website www.sarcoma.org.uk) and I’d really really appreciate it if you could tell someone something about Sarcoma.

  • Sarcomas are rare cancers that develop in the supporting or connective tissues of the body such as muscle, bone, nerves, cartilage, blood vessels and fat.
  • There are around 3,200 new cases of sarcoma diagnosed each year in the UK.
  • Sarcomas account for about 11% of childhood cancers.
  • Sarcomas account for about 14% of cancers in teenagers.
  • Most sarcomas (approx 55%) affect the limbs, most frequently the leg.  About 15% affect the head and neck area or are found externally on the trunk, while the remainder will be found internally in the retroperitoneum (abdominal area).
  • There are around 70 different sub-types of sarcoma within these broad categories.  These sub-types are determined by the tissue of origin (the tissue in the body where the tumour originally formed), genetic characteristics or by other molecular analysis undertaken by expert pathologists.

Types of Sarcoma

  • Sarcomas fall into three broad categories:
  • Soft tissue cancers
  • Primary bone cancers
  • Gastro-intestinal stromal tumours (a type of soft tissue found in the stomach and intestines commonly known as GIST)

Causes of Sarcoma

The causes of most sarcomas are unknown.

Treatment

Despite the many different sub-types of sarcoma, the general pattern of treatment is similar.

Surgery is commonly viewed as the best option for a ‘cure’.  Chemotherapy will usually be used with bone sarcomas before and after surgery, although it is less often used with soft tissue sarcoma. The case for chemotherapy following surgery is uncertain with soft tissue sarcoma but may be suggested with sub-types known to respond well to chemotherapy.

There are circumstances when radiotherapy offers benefits, usually after surgery but occasionally at other times too.

The treatment plan developed by your doctors will be specific for you. You may meet other patients with a similar diagnosis but who are having different treatment but this is usual and nothing to be worried about.

Surgery should be undertaken under the supervision of a sarcoma specialist multi-disciplinary team, even when the surgeon is not a regular member of that team.

There’s a really informative video created by Papercut Pictures called “All in it Together – Living with Sarcoma” from which you will a small selection of different ages, diagnoses and stories.  Do take a minute to watch http://vimeo.com/papercutpictures/sarcomauk

 

Phyllodes is a soft tissue sarcoma…

 

Tonight found me at our London Sarcoma Support Group’s party to celebrate Sarcoma Awareness Week held at Maggie’s Cancer Caring Centre in Fulham, London.  An amazing vital group of patients, carers and friends.  The volume was high and the laughter loud.  There was also tears and supportive hugs.  It was lovely to meet some of the group members’ husbands, wives, children, partners who were also there supporting them.

Sadly one of the group had lost his wife only a few weeks ago and I hope found comfort in our company.  Another has just found out his cancer has returned and he is to start yet another course of chemotherapy to keep it in check.  BUT whatever was happening with each of us in attendance you knew that there was a strong bond of support there and a lot of giggling and laughter.  Despite my not having been to several of the recent monthly meetings due to a number of reasons, I was touched that so many of the group were pleased to see me and remembered what I had been diagnosed with, what I was off doing shortly after we last met.

You see I’m not a ‘support group’ sort of a person.  For those of you that know me well, you’ll know that despite my putting this blog up in the public domain, I’m actually fairly private about a lot.  For some reason, for me, I find it useful to be able to use this blog to be open!  I also know that my family can read it and know what’s going on but don’t need to speak about it or mention it – we’re not good at talking!

All that said, I enjoy attending the sarcoma support group… but I perhaps sometimes appear to the group as the one ‘who’s sorted’ and is ‘supporting’ rather than ‘needing support’!

A friend in need

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Today I woke early and headed out to get the bus into Chelsea.  I’d had a somewhat sleepless night anxiously running through all the things I needed to say this morning.  As the bus slowly made it’s way down the Kings Road I will still mentally making notes.  This time though the notes and things to remember weren’t for my own ‘consultant Q&A session’.  I was meeting up with a lady that I’d ‘met online’ a few weeks ago.  She posted on a forum a question about Phyllodes and had concerns there was nothing out there nor anyone else diagnosed.  Her comment appeared in the many different internet search mechanisms I have set up and we became acquainted.  Over the past few weeks we have corresponded by email regularly and I have been able to introduce her to the ‘Phyllodes Support Group’ on Facebook.

Like so many of us diagnosed with Phyllodes, we can’t find information or resources easily accessible.  If you go on to many cancer sites or into information centres there is never (or very rarely) any mention of it.  Just in that moment, it can feel even more frightening and isolating than ever.

Today was a consultant appointment that I had encouraged.  The lady had many questions and her own hospital didn’t seem to know or understand Phyllodes.  Therefore a consultation at the Royal Marsden with sarcoma specialists we hoped would help her get answers.  The lady had been up tremendously early to make the journey to London and we met (with her adult daughter) in a coffee shop around the corner.  Because of delayed trains we only had about 30 minutes.  But enough time to walk and talk on our way to the hospital, run through the questions she’d got written down and importantly, I believe, enough time for her to meet me and know that we do survive Phyllodes!

I left them at the hospital as they were called in for the appointment, we hugged and I wished them luck.  The lady then handed me a card.

The sun was shining so I decided that, for once, I really did have enough time to walk home and set off along the Fulham Road and to the river pathway.  Just past Battersea I found a bench sheltered from the now very hot sunshine and stopped for a minute.  My phone blipped with a text from the lady letting me know they’d just left the hospital and would email fully later.  I, of course, (and you’d expect nothing less) suggested that she and her daughter enjoy the sunshine somewhere fabulous for lunch with a glass of bubbles… !!!  

I then opened the card.  The front was a picture of a baby elephant.  Inside the words:

“They say that ‘Elephants never forget’… well neither will I Anna!  I will never forget all the support you have given me this last month – giving me links and pointing me in the right direction.

It’s official…. “You are a Star AnnaGoAnna!”

There might have been a tear that snuck out and rolled down my cheek… or it could have just been the sun getting in my eyes!

I walked home wondering what it would have been like had there been a ‘Me’ around when I was diagnosed.