I have just met with my onc, post having a lumpectomy and the grade of the tumour has been downgraded to a grade 1 - it was a grade 2. I was the subject of debate though, as the histology report noted lymphovascular permation was present. However, four lymph nodes were free of cancer. They therefore gave me the decision as to whether I wanted chemo. I will have hormone treatment and rads. I wonder whether looking at the print outs (it improves my chances by 2 per cent) whether it is worth it?? I am questioning the impact on my quality of life for something that might be. I have two young children 13 months and 5 and I also have to think of them. Anyone been in the same boat as me?? This shared patient decision making is not all it is cracked up to be!!! ANY views are welcome!
Hi,
sorry you have had to join us.
I was diagnosed 1999 lymphs clear grade 2 lobular, had my overies removed but was not offered chemo, I always had a little nagging feeling that I would have been better off if I had had it. Coming up to the 5 year point and wham, secs to liver and bones. I can understand your concerns re young children and quality of life. Chemo is hard but doable secondaries are cruel, constant chemo is horrid but all you have left to extend your life.
It has to be your decision and others will be along with their experiences. I hope it will help you.
Good luck.
Love Debsxxx
I was dx grade 1 idc in Dec. had wle and lymph node removal. 2 nodes out of fourteen positive. Was not offered chemo. Just rads and hormone treatment. when I questioned my onc, he said chemo would only give me another 2% and for that the side effects would not be worth it. However it all depends what type and grade you have. I was concerned about not having chemo at first but have now decided that I have to trust my onc. Good luck with your tuff decision.
Hi terrier, My lump was grade 2 with 2 out of 21 lymph nodes infected. I was told that the oncologist recommends chemo but haven’t met yet as have to go for more surgery to make margins clearer, here’s hoping I don’t get offered a choice!! Debs xxx
Hi Terrier,
my BCN said after my results that the onc may say Chemo would be my choice, what a horrible decision to make but I decided that I would have it as any % increase was an increase. It’s purley a personal choice.
As it turned out he didn’t say I had a choice and I have finished my chemo 6 weeks ago. No it’s not easy and it’s only now I can really appreciate how ill I felt towards the end. I’m still feeling the effects now but getting better every day.
I lost my mum to this cruel disease 29 years ago when I was only just eighteen, she had liver secs and I was only saying to my sister yesterday on the way back from rads, would she have been here with us now if chemo had been available then!
An agonising decision to make
Good luck
x
Hi Terrier, you need to do your own research on chemo and then take time to make a decision that is right for you. Unfortunately Oncologists often do not share a lot of information-mine certainly didn’t and she made up statistics as she went along!!
Many women choose not to have a particular part of the treatment. They may have surgery but then choose not to have chemo, rads or hormone therapy. It is quite hard to get accurate information on the various therapies as stats can be manipulated to suit a particular argument. My advice would be to take time to make an informed choice.
Cancer is a complicated disease and everyone is different.
If you want to pm me I would be happy to share more
Best wishes
Leadie
Hi Terrier, was in same position as you didn’t get told to have chemo but could have it if I wanted… 15mm grade two,no nodes involved, the thing that was making it an option was my age…44… got friend(56) who had roughly same results and it didnt get mentioned for her. It was going to give me 3% over ten years, was also told that the chance of me dying of non cancer illness or accident over same 10 yr period was 2%.
It’s purely a personal thing,I know I would be rubbish on it,but if was told that had to have it then would just get on with it,but like my surgery was given an option, was offered mastectomy or lumpectomy,with that I took the view of why have something if I don’t really need it, if they thought I should have had either mastectomy/chemo then they would have been telling me to go down that route and not give me an option at all.For me and the percentages given ,the risks outweigh the benefits,it’s something you have to live with, not an easy choice . Good luck.
Hi Terrier,
I had a 18mm grade 1 lump with micrometastases in only 1 out of the 9 lymph nodes taken and chemo was left to me to decide. I had a skin sparing mx and LD recon due to the position of my tumour (just behind my nipple). From what I recall with no further treatment the chances of recurrance he quoted were 20%, tamoxifen would half that to 10% and chemo another 2 - 3%. I was only 39 at DX and decided that I wanted to give myself every chance of being here here in the future and for me 8% seemed better than 10%.
The thing is statistics are just that. Had I had no further treatment I may have lived for donkeys or not. With all the treatment I may live for donkeys or not. The thing I have learned from this forum is everybody’s BC is different and you will find many women with quite high nodal involvement and aggressive cancers being disease free for many years whilst others with low grade and no nodal involvement having recurrances.
Don’t focus on the 2% - focus on what decision you can live with. I didn’t want to ever think “what if” and whilst this might sound silly I was kinda glad they found the micromets because otherwise I would have been node negative and probably not even offered chemo (some hospitals would have classified me as node negative even with the micro mets) and I wanted to throw everything it.
Hope you can make a decision that is right for you, x
Sorry, forgot to say, I am not sure what lymphovascular invasion is entirely but is that not to say that there was some evidence of invasion into the lymphovascular (ie blood supply for the lymph system) then there is some evidence the cancer was certainly thinking about journeying on? I may be wrong it may be that lymphovascular invasion is just talking about the cancer heading down the lymph vessels towards your lymph nodes.
If I was you I would make sure I understood the lymphovascular bit and, if it meant that the cancer had begun to move on then that would certainly help me in my decision.
My attitude would be 'that is MY 2% not the cancer’s,mine and my childrens-for every 100 women in my situation 2 will die without chemo who would have lived with it!
Ostrich,
thats a really good way to put it- focus on a decision that you can live with.
cathy
All good comments. I guess I am a sceptic. I don’t think everything about medical matters is a pure clinical decision. I was told 5 years ago my baby would die in the womb. I was told that every day for the remaining time post the 22 week scan. I was told they were 99.9 per cent sure. She didn’t die. We weren’t prepared to give up on her until we heard her last heartbeat. The human spirit is a powerful medicine. That’s partly why I don’t think the 2 per cent is enough to make me think ‘yeah, let’s go for it’.
Terrier I have sent you a pm
Clarabelle xx
Hi,
I am always surprised at the differing advice we are given. I have to say that 2 % is also 2000 women out of 100,000, which for me was a bit harder to ignore than just 2 women. They say that one third of women with an early dx get it back and that is why they now offer chemo. As you can tell I am pro chemo despite arguing my head off against it when first told it might be on the cards. MY onc has apparently achieved a really high survival rate, close to 90% and gives us chemo routinely. My research nurse says he tracks all the trials really closely and now gives chemo to anyone under 50, whether they have spread or not. I had 28 weeks chemo, no spread and he said it would significantly improve my chances so I just did what he said. No regrets was the path I picked but as Ostrich said you must do the right thing for you. This is such a hard thing, poor you I would have dithered. Just remember that a recurrence is a very different situation from a primary, if that wasn’t bad enough! I had everything ops, chemo and rads and find that I can at least think well I did everything I could, the rest is down to fate
Big hugs for your nightmare decision
Lily x
Is that a third of women with any type of early diagnosis breast cancer get a reoccurance? Where is that figure from?
Hi
I was told that chemo would make a 2.1% difference and I decided not to have it. ( I had a 8mm tumour which I couldn’t feel, clear margins and no node involvement.) My oncologist entirely supported my decision and as I am 64 and my son is 27 I was happy with what I chose to do.I did agree to radiotherapy though. I think that the younger you are the more likely you are to be offered everything that’s going. The side effects of chemo should be very carefully considered, I have a friend who has awful permanent side effects from chemo and Tamoxifen, which will never leave her. Find out as much as you can and then be happy with your decision.
Would also like to know where the figure of one third of early dx patients get a recurrence. Never heard that quoted before.
if 800 woman out of 1000 survive with out chemo, and 820 out of 1000 survive with chemo,
then having chemo :
-will be 0 benefit to 800
-will save life of 20/200 or 10% of those who will die
-and will be some benefit or nil benefit to 180 women who will get secondaries and will die.
so for me 2% is not really here or there, discussing whether 2 % benefit is good for something that isn’t life or death.
As for the statistic of 1/3 of early diagnosis will get secondaries or recurrence, yes I have heard that, its probably a bit out of date and maybe its a quarter now, I think if you define early diagnosis as node negative, up to 1/3 of node negative patients will get a recurrence. Remember that you can be node negative and be considered a high risk of recurrence, this is determined by size of tumor, HER status, presence of vascular invasion,
Catherine
Hi Terrier
I was 34 at dx (14 months ago) with children of 1 and 4 and not a lot of family to help with them. I was grade 3, 2.1cm, with no nodes. I chose NOT to have chemo and herceptin as I was told it would only make a difference of 3% (from 89 to 92%). My onc said if were his wife he would say it was not worth it and to only have it done if I was the sort of person who would worry about it coming back.
The other important factor is which hormone treatments you have. I am having Zoladex AND Tamoxifen, which together do the same as chemo would anyway (one stops the ovaries, the other mops up stray cells).
Hope this helps.
Lolly
Tamoxifen does not mop up cancer cells- it stops estrogen promoting growth of cancer cells
Estrogen can promote the growth of breast cancer cells. Some breast cancers are classified as estrogen receptor-positive (also known as hormone sensitive), which means that they have a protein to which estrogen will bind. These breast cancer cells need estrogen to grow. Tamoxifen works against the effects of estrogen on these cells. It is often called an antiestrogen or a SERM.
Cathy