Today was my day to discuss Chemotherapy with the Oncology department at the other hospital...I was back under the care of the original Onc team which I was glad about as he was aware of the problems I experienced back in June this year.
I was feeling quite apprehensive about this appointment as I seem to have far more questions than answers at times.
Anyway, to try to keep this as brief as possible I met with a lovely Oncologist who was part of Dr L's team. Bit disappointed when I realised that I wouldn't be seeing him (Dr L) but really only because he was aware of my 'history' with Chemo and Radiotherapy to date. However, I didn't need to worry as she was totally lovely and really clued up.
We discussed the build up to the op, previous treatment, how I've been since the op (did cry a little at this point but mainly held it all together - Sarah said I did brilliantly....:-))....) and other aspects such as the wound not healing yet.
She confirmed that Chemo could potentially give a 3-5% increase in the chance of the cancer not returning to a new spot - or even to the same spot. However she also felt that my chances of suffering a severe reaction would be far higher....
I explained that I was really frustrated that I hadn't been able to have access to my histology reports which would confirm the Stage, Grade, lymph node involement and aggresiveness of the tumour that was removed. She confirmed that they also hadn't received this from the previous hospital and without it she couldn't really answer my questions in full.
She then said she would ring the hospital and see if she could get the report faxed over.
Amazingly she got it within 5 minutes ! Brilliant.
We then continued with the meeting and Dr L also came in and took part. He said he was fully expecting me to be resistent to further Chemo and understood my reasons completely. I explained that I wasn't happy about the idea of poisoning myself 'just in-case' and he more or less agreed with me. He also said it was obvious that I'd thought things through properly and it wasn't a 'knee jerk' reaction....
I discussed with him that numerous people had done the Chemoradiation, followed by surgery, then followed by adjuvant Chemotherapy and still got mets to other places or a return to the original site - therefore with no guarantee's whatsoever it didn't feel like the right path for me to follow at this time.
At no time did either of them say 'You NEED to do this Carole' because if they had, I would risk it.
He confirmed that there would be, and could be, no guarantee's either way..in other words I could have the Chemo and it might never return, or maybe it would - or I could refuse the Chemo and it might never return or maybe it would.
On those statistics I decided no Chemo at this point in time.
She then discussed the histology report with me explaining that the tumour they removed was 3cm, poorly differentiated, Stage 3a, Dukes C, T2 N1.....(T2 N1 tells them that there was lymph node involvement) Apparently 12 lymph nodes were harvested and one was impacted.
In English she explained that this meant that the cancer could have moved to a new position via the lymph node but on the other hand may well not have done...so again, no guarantee's.
Then she discussed with me the diagnosis of 'poorly differentiated' and explained that this related to the agressiveness of the tumour.
A well differentiated tumour is one with clear borders and easily identified 'clear margin' around the tumour - mine is poorly differentiated which equates to them being unable to define the exact borders and shape.
So again this meant that due to this it could have moved off to find a new home or it may well not have done so....
Based on all the above, I've decided to play a waiting game until my 6 monthly check up in June. If there is any sign of it then we'll discuss Chemo - but not now. They are perfectly happy with my decision and so am I.
I don't want anyone to think I've taken this decision lightly - because I haven't. I've taken what seems to me to be the best possible choice for now.
Sarah asked the Oncologist for her opinion on whether (in some people) the actual Chemo could cause new tumours.
Oncologist said that she didn't think that was the case however it has been proved that Radiotherapy could and does sometimes cause new tumours later on down the line...so taking into account the way I burned during my treatment that could be a cause for concern at a later date I guess.
However, for now I'm just concentrating on recovering from the op - which is still going to take some time as I'm still very weak at times - and getting myself back to full health, returning to work and some kind of normality, eating well and continuing to support my immune system as best I can and we'll see what the future holds.
Tomorrow I'm off to the other hospital to see if the wound has healed enough for the stitches to come out. They've warned me that if it is ready it will be very painful now and to 'bring paracetamol with you just in-case'.....
Now call me daft if you like, but I would have thought that a hospital could supply me with painkillers on the day rather than expecting me to bring my own supply of paracetamol !!!
Fingers crossed for me that if tomorrow is stitches out day that it doesn't hurt as much as I'm now expecting it to :-((
About Me
- Carole
- I'm Carole, living in London, happily married and mum to two amazing boys.I was diagnosed with Stage 3 Rectal Cancer in April 2010. Surgery took place in November 2010 and I now have a permanent colostomy...Spinal mets were then diagnosed in October 2011...In January 2012 I was told of further spread to the hip area (multiple lesions)..My life expectancy is now 6-9 months. Walk alongside me on the last part of my experience with this..
If it isn't obvious from reading her blog, a couple of days ago Carole talked through with me what she felt regarding post operative chemo. No one should be in any doubt that she hasn't done her research thoroughly - as usual - (you're wasted in the job you do!!) and that she hasn't thought long and hard about the decision not to have chemotherapy at this stage. With you all the way on this one, honey. Just keep on listening to what your body is telling you, and just concentrate on getting stronger. Yes, it is going to take quite a while longer to be back to anything like 'full' health again (whatever that is!) - probably about 4 months if my mum's recovery has been anything to go by - so in the meantime, relax, don't be tempted to overdo things, and take each day as it comes.
ReplyDeleteHope today isn't too bad and you are stitch free by tea time!
Love ya! xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Thanks Lou, it means a lot to know that people *understand* why I've taken this decision.
ReplyDeleteLovely to see you this week and hopefully we can get together again either before Christmas or shortly afterwards.
Much luv & hugs xxxx
Hello lovely lady
ReplyDeleteHave been keeping up with you posts although I do not always manage to comment.
Your comments on the radiotherapy and mets is interesting. I had radiation in the belief it was the only way. Within one month I had a new 'spot.' Living with that now.
You have made an informed choice regarding chemo, which is the way to do it. Sending you lots of healing energy for a lifetime of good health and no pain when stitches are removed xo
Carole. Despite my tumour being 'encapsulated' with no vascular invasion it was graded as G2/3 on the Edmondson-Steiner scale (like your Dukes scale but for HCC). This is moderate-high differentiated. HCC tumours are known to be aggressive (I'll say GRRRRRR! to you too tumour). I was offered 6 monthly checks by the surgical team. But I didnt feel this was frequent enough. In the US patients get 1 month, then 3 monthly checks. I asked my GP if they will do a 3 monthly tumour marker blood test in between - quicker, cheaper and no worries about radiation as with CTs. They said yes. So did my gastro consultant, he even gave me the forms filled out ready for 3 months and 6 months Does rectal cancer have a reliable tumour marker test?
ReplyDeleteHi Chez,
ReplyDeleteI wish you exactly the same my friend - pain free and energy to do the things you'd like to do.
You're right, I have made an informed choice...it may well turn out to be the 'wrong' choice, but for now it works for me.
Interesting comment re the radiation and your mets.....
I didn't actually expect her to be as upfront and honest as she was - they do tend to dismiss things as 'coincidence' rather a lot - but she was clear that there *is* proof that Radiation can cause mets.
Take good care Chez, keep resting and letting people look after you xxx
Hiya Fiona,
ReplyDeleteI'll talk to my GP about the possibility of this on Monday (have an appt booked). Would make sense to keep a track of things if it's a reliable marker for rectal cancer.
Off to find more info now - thank you for the suggestion xxx
Hi Carole.
ReplyDeleteBefore my 'stuff' returned my regime was a 9 monthly CT scan and a 3 monthly blood test to check for CEA (Carcinogenic Embryonic Antigen) levels. It is present in unborn babies at a relatively high level and drops to almost non-existent once the baby is born. My first test at about 6 months post surgery was 1.1 . The acceptable level is 0 to 2.5 . At 9 months is was 5.5 which coincided with my CT / PET scan and the discovery of METS. They said the increase was expected what with the new stuff. I understand also that it is not totally accurate but I would take all the tests available as they all come together to build a picture.
You are very brave not to have the chemo as you know my opinion...I would have everything they could throw at it if I could and if I wasn't allergic to the Capecitibine who knows if this could have sorted me out...maybe, maybe not. Although following your logic which does make absolute sense...maybe a higher power knew that if I had been okay with the Capecitibine and 5FU and it hadn't worked, with the c coming back anyway it would have knackered my immune system and I would not have been so strong to take the current regime and fight the current battle with the little cancer cells.
Therefore...if you had had the full cycle of cap and 5FU you may not have taken to the op like you did and although a bad time was had you may not have been recovering at the rate you are.
Hope you get my point that you are doing the right thing in not having it and saving/building your bodies defences for when it returns...That is not to say it will and some reading this may be offended and think it a defeatist attitude, on the contrary it is realism and making sure either it doesn't return or that you are in the best possible shape if it does...
Much Love
T xxx
Hi Tony,
ReplyDeleteI'm heavily into realism as you know - I absolutely refuse to believe this is 'all sorted out now' simply because it would be too soul destroying to get myself into that mind-frame then have to deal with it returning.
Unless I get a good few years down the line, and remain free of new tumours, I'm being realistic (not defeatist) about the possibility of having to find new ways of dealing with it. That way I'll be able to cope.
Thank you for the vote of confidence - I knew you'd get where I was coming from and I do believe that had I tolerated the original chemo my recovery at the moment would indeed be longer and harder.
Everything happens for a reason eh? xxxx
Carole and Tony
ReplyDeleteHi Tony. I thought there was a tumour marker. It's like my AFP - exists in the foetus then drops to zero as an adult. Mine should be 0-10. It was 42 when the tumour was found by CT, then 152 3 months later. Dropped to 3 now but I will be watching it like a hawk every 3 months and if it starts to rise it's a backup reason to ask for a CT or further investigation rather than be bound by the rigid timetable of 6 monthly checks. I've made contact with a US liver cancer patient, and their AFP rose in line with new mets, so it is a guide though as Tony says needs to be used in combination with other tests.
Carole. Totally with you on the being realistic about ways of dealing with possible recurrence. My family consider me 'cured' (though no doubt my blog shows them I dont feel the same way) but the 2 liver cancer patients I've been in touch with online have both had recurrences within 3 years. I want to keep up to date on what alternatives there are to surgery, so that I have some say in my life rather than assuming the medics always know best.
I'm behind you sis, no more poison for you! Although you are starting to look better on the outside, I know the inside is still under a lot of strain and having Chemo could set you right back. I see you being able to slowly slowly move forward now and start to rebuild your strength and of course your confidence. Chemo is a good choice for some but you thought of you going through six months of chemo would not be settling. Love you lots, mum and dad on their way over to you now to cook you a lovely dinner xxx
ReplyDeleteThanks Sis, and also thanks for coming with me and asking totally sensible questions from the Oncology team....
ReplyDeleteThis decision would have been double hard if I didn't have the support of yourself, mum, dad, James, Leanne, Dj and of course Rab too.
It helps to know that whatever happens in the future, none of you will 'blame' me for refusing the Chemo at this stage of the game :-)
It's nearly Christmas and we're all together this year - many things to be pissed off about over the past year but for the next few weeks I'm just glad we can do Christmas as a family and see what next year brings later on
xxxxx