I’m brand new here and I really hope people can help me with this decision. This is my situation:
Diagnosed April 11, had lumpectomy and sentinel node biopsy. Results show a grade 1 cancer 1cm (ductal, invasive) and clear lymph nodes. They got a clear area around the cancer in the breast.
They gave me 89% survival rate over 15 years as a base figure but said that tamoxifen and chemo would increase that by 6%. Tamox alone would increase by 3%.
Basically they’re asking me to decide whether to have chemo based on a 3% survival rate benefit.
I’m 35 and I have a 2 year old child. There is a part of me that wants to do anything just to make sure I’m alive in the years to come. However, there is another really big part of me that thinks that chemo isn’t necessary for me because there is NO sign of spreading and the cancer can still recur even if I had chemo.
I’m told my chances of recurrence (either breast or elsewhere) is 9%.
Its so confusing!
I also wanted another child especially since my partner has no children of his own and we’d planned this to happen in the next couple of years. Chemo would also destroy those chances (possibly). Obviously, I want to make sure I’m here for my daughter but a 3% rise in survival rates just seems a tiny amount considering the long term effects of chemo (not to mention the shorter term horrible side effects).
My first thoughts are to take the radiotherapy and the tamoxifen and see how I go on. Seeing a fertility consultant and the oncologist in the next couple of weeks, but they’ll want a decision fairly soon.
I was in a similar situation with no children at the age of 32, a 7mm grade 2 cancer and no sign of spread. I didn’t take the chemotherapy, or the radition or the tamoxifen.
I’m surprised they’ve given you a 3% benefit to chemotherapy - for a small, low grade tumour that sounds a lot. The survival benefits I was given amounted to about 1% with all three treatments.
So I went on to have a baby, regular checkups, then get pregnant again, then unfortunately was diagnosed with a recurrence 5.5yrs after the primary cancer while pregnant for the second time. I’m just telling you my experience, not really giving you an opinion as I don’t think it’s my place to do so.
I don’t regret declining chemotherapy the first time; everyone involved doubts it would have stopped the recurrence. But I do very much regret not having radiation. I wish I had. I wanted to save my breast basically, wanted to go on and have children and be able to breastfeed. I did, the first time, and for a short time with the second in between treatments, but at a very great price. (That’s not to say the radiation would have cured the cancer, of course no one knows that.)
Very good luck with your decision. It’s so hard to decide to put yourself through chemotherapy for such a tiny possible benefit, I know.
What a toughie, and unfortunately only you can make that decision. I was dx Sept, op Oct - grade 2, clear margins, no nodes affected, oestrogen +, onc never offered chemo (even though I’m 36, and was told I’d get ‘the lot’) so I never questioned him, so I’m a ‘just’ rads n tamoxifen girly, (96% chance of it not coming back) .
I’m sure many ladies will be along shortly with advice, as many on here have been given the option of chemo, with low grades, but do think carefully, make the decision that is right for you, talk to your onc/bcn/helpline get as much info as you can.
Just to clarify, my cancer was grade 2, 1cm exactly, ER+ and PR+ but HER- , No node involvement.
They gave me 89% survival over 15 years (how many years did they specify for you?)
They said tamox would increase this to 92% and chemo increase it by another 3% for an overall survival of 95% over 15 years.
At the moment my thoughts are radiotherapy, tamoxifen (and stop it before the 5 years are up) but I’m wondering what the oncologist will say?
Even though some types of chemo drug are better for fertility, all of them have some effect on fertility and there are certainly no guarantees. If someone told me I could have chemo and it wouldn’t affect me long term I’d do it for sure, but all the stuff about long term health risks and early menopause - I just think perhaps it isn’t enough of a benefit (3%)
Thanks for your input and I’ll be updating after my oncologist appointment for sure to let you know what he said.
x
hey
im 42 and havent any children. . did want some. but i had to put myself first. . i wasnt given the choice, i was grade 3, so had cemo and rads. finished 2 weeks ago… . but looking back im glad i have had all possible.
xxxx
your figures are the same as me bar the grading (i was 3 but still stage 1 as was very small) i chose after many tears & much deliberation to go ahead with chemo which i finished yesterday, tough but doable & am so glad that i did it, will be doing Rads next month & then hope to put the last 6 months behind me & move on with the rest of my life knowing i have chucked everything possible at it.
A tough very personal decision.
Sarah.xxx
Ps, my BCN & Gp told me anything 3% & over was worth doing as did Macmillan, the long term health effects some of which are very rare are less i think than the chances of reoccurence.xxx
Hi Calmlife. I had less options - mine was in my lymph nodes, though only a few, and was grade 2, 18mm in size. But I have the same issues with fertility, being 36 and having no kids yet. I think anything that helps get rid of it/stop it coming back is worth doing and the chemo as Sarah says is do-able. Not pleasant at times, but there are normal times throughout. I got some embryos frozen, PM me if you want any info on that.
Al x
Calmlife I am sorry you (and all of us) are in this horrible boat. I am 33 and have no children, and I am dealing with accepting that I probably never will (biological ones anyway - I believe that children do not have to share your genes to be yours, but that is probably a subject for another thread!).
My personal opinion is that I would take any and all treatment offered - I’ve had chemo, surgery and radiation, and am still on herceptin and tamoxifen. I want to have the best chance of living and even if an extra treatment only offered a tiny % of an extra chance then I think you never know, that could be the bit that tips the balance. Of course everybody thinks and feels differently and only you can decide, but for me I couldn’t accept the idea that there was a treatment out there that could have helped and I didn’t take it. Chemo is horrible but it’s just a few (admittedly miserable!) months, compared to the rest of your life - for me that is no contest.
You are lucky enough to already have a child - is it that important to you to have another one? Sorry I don’t mean that to sound horrible, I really don’t. Of course this is a difficult decision, I just mean that if I were in your situation I think my priority would be staying well for the child I already had, not risking my health for a potential future child that might not even happen. Again, I really don’t mean to sound awful and I do hope I have not upset you by saying this, I can’t quite think how to word it better. But I wish you all the best with this decision, your treatment whatever form it takes, and everything else that comes with going through this awful situation. xxxxxx
When first diagnosed I was told Grade 2, just rads and tamoxifen to follow surgery, but even then I was going to ask them how much benefit there would be if I had chemo too. As it turns out the tumour ended up HER2+ and Grade 3 so chemo was pretty automatic, but I was going to ask for it anyway, as that extra 3% could make all the difference.
But my personal situation is very different. I’m older than you (49) and have finished my family, if I were hoping to have more I would obviously have other priorities to think about.
Is there any way you can freeze some embryos?
You might also want to ask about whether further pregnancies would increase the risk of recurrence, particularly if you are strongly Er+, as that might make a difference. (I’m not an expert and haven’t had to look into that option so I’m just posing a question rather than trying to lead you one way or another, so please don’t panic at the question.) That might affect your decision both with chemo and with another baby.
It’s a really tough decision and my heart goes out to all the younger women on here who are still in the middle of making their families, it’s such a touch disease. Best of luck with making your decision.
I too had to make the decision. Was first diagnosed Grade 2 Stage 1 then after WLE was told Grade 3 stage 1. No spread to nodes. I’m ER+ and PR+. I was given my stats, (I’m 57) and then benefit to me of Chemo was 3%. I was told this didn’t increase my survival rate by 3% if I had the chemo, but that 3 out of 100 women like me would benefit by having chemo, 97 wouldn’t. I hated the thought of chemo, but decided to take it. I don’t know if I’m one of the 3 or one of the 97, and probably never will know, but had to go for it. I’ve just had my second Fec and it’s a bit grim but my reasoning was chuck everything at it that I can, then I know I’ve given it my best. I can sleep at night.
hi all.
my bc was grade and stage 1. my consultant told me that having cemo whould be 3% benifit. i turned down cemo. he said i had made the right choice. iam on tamoxifen and zoladex now. like over ladies have said they have took everthing and years down the line there breast cancer has come back. its really hard to make your mind up when wanting more children aswell. at the end of the day there is only you what can make the choice. good luck with what ever you decide. xxx gaynor
Hi calmlife, how’s the decision making coming along? Think my stats were over 10 yrs but not sure, also my tumour was 12mm.
It must be really tough when you want more babies, even though I’m classed as young at 36, I have 2 smashing lads (13 and 17 - was v. young mum!) And my baby making days are well and truly over.
Hope you’ve managed to get in contact with some professionals to help with your decision, take care and be kind to yourself.
I was 34 when I had BC it was stage 3 er etc + I had no lymph node involvement but had chemo as ‘belt & braces’ I had 6X CMF, tamoxifen and zoladex… I married 18 months later and ant the grand old age of 39 had a wee boy! followed 20 months later by a girl…the lights of my life…I hope this helps you feel that it may still be possible to have chemo then babies. XXXXXXXXX Jeanette xx
I chose to start Tamoxifen and Zoladex while I thought about chemotherapy. There’s a study at the moment that’s looking into whether having Zoladex (which temporarily switches off your ovaries) protects them during chemotherapy. It’s also used as an alternative to chemotherapy - a few years ago a big study reported that two years of Zoladex was as effective for younger women with early stage ER+ breast cancer, although as it’s a newer treatment it isn’t included in the computer statistics that oncologists currently use to determine your risk of recurrence. Good luck - I’m a terrible decision maker but did eventually come to a decision that I still think was the right one.
I didn’t want to do chemo at first but i’m down 1 and 5 to go.It is hard to make this decision my onc said that i could opt out at any time so it is not set in stone. However i am very lucky as my side effects have been uncomfortable but minimal for a few days but feel fine. I wish you well only you will know whats right. love chris x
I have a couple of comments to make about your remark: “However, there is another really big part of me that thinks that chemo isn’t necessary for me because there is NO sign of spreading and the cancer can still recur even if I had chemo”.
(1) How do you know you don’t have cancer cells in your blood ? Just because you have clear margins, and no evidence of cancer in your lymph nodes, that does not mean you don’t have micro-mets in the blood - because cancer spread via blood as well as the lymphatic system.
(2) Yes cancer could recur even if you had chemo, but if you have micro-mets in the blood, and you don’t have chemo, it will definitely recur (Tamoxifen will just keep it in check, for the period you take it).
In my view you owe it to the child you already have to do everything in your power to increase your odds of being around for them. I can’t comment on whether chemo would impact on your fertility, but tend to think survival is more important.
It is such a hard decision you have to make. I hope that you find a solution you a comfortable with. I had no choice and somehow that was easier.
Lemongrove, Belinda or anyone else who might know, I am v surprised by you comment about tamoxifen. I am not er + , so have not looked into,but could I just clarify that you are saying that tamoxifen does not actually prevent the cancer from forming at all it simply holds it in check until you stop taking it. Then the cancer comes back? If that is the case why are not all women with bc given Chemo and put on tamox for life or until the cancer becomes immune? Is that the same for herceptin?( which I am on) sorry if I sound thick, but it was my understanding that these drugs prevented the cancer cells forming into tumours hopefully long enough for the cancer to run out of steam. ( another opportunity to look thick)
Calm life sorry if I have highjacked your thread a bit, but I hope this is relevant to ou too.