I'm hoping to get some input from all of you wonderful people...I need to decide whether to have chemo or not. A bit of info impacting on my decision … I had my first surgery almost 4 months ago, a wide local excision where they found a large DCIS, 2 small IDC's, and an NCIS. 7 weeks ago I had a bilateral mx with immediate DIEP recon, where one flap failed. I then had infection on both sites followed by skin grafts. Mostly healed, but chemo may stuff that up!The complications have made the time since the initial surgery long and my cancer is very early stage. Basically, they're saying that they are prepared to give me chemo but the benefit is negligible - 1%. I've decided against Oncotype testing as it will extend the optimal time, cost a lot of money, and may get me no closer to the decision I need to make.Any suggestions, advice, personal experience is absolutely and gladly welcomed!!!Toma x

I found it. I'm not suggesting that it should change your mind but it does help clarify things, I think... Purely on the statistical side, for me, when faced with the same decision as you now are, I looked at it from different angles. One of the scenarios for me was this. I was in a room with 1000 women who were told that they had been diagnosed with my type and grade of breast cancer. We were all told to have such and such surgery, which we did. We were then taken back to that same dreaded room and given a card with a number. Then 830 numbers were read out, and those women were allowed to leave the room and go next door for a celebratory cup of tea and slice of cake....considered cured (10 years). The other 170 shocked women looked at each other with dread. Just then the compere said...."Oh sorry, I forgot, I have another 70 numbers to draw, that is the women who had additional chemo, they can pick up their bags and join the others". If, perchance I was one of the 100 left behind to the future of stage four, would I wish that I might have been one of the other 70, or would I go "Que Sera Sera..." and accept it? For me the answer was "Fuck no" bring it all on, and if the wheels still fall off, at least I would have given it my best shot, and not have been left with the perhaps..." Each of us has to weigh it all up, make our decisions and then go forward. As Afraser says, having started chemo, you can always stop. But it doesn't work the other way. Best of luck. (Author: AllyJay)

Thanks everyone :smile: After some consideration, I've decided to not have chemo but to take Tamoxifen and see how I tolerate it. Thanks again x

Ultimately, @rainwalker, it comes down to whet you can live with. If you don't have chemo and the BC recurs, will you have regrets? If you have it and the chemo causes other problems, can you live with it? There's no right or wrong answer other than to say that the stats are on your side unless you're the 1%. @AllyJay has a great analogy which I can't get to at the moment - maybe someone else can find it. Whichever way you go, good luck.

@rainwalker, There really is no right or wrong answer to this as @sister says, and unfortunately you are the one that has to decide. Unhelpful I know, and trusting your own instincts through this thing is difficult enough. You never really feel totally sure that you have made the right choice because there are no 100% definitive answers to any of the questions. No matter how much we keep searching for them they all remain so variable. You have to do what your instincts tell you and trust yourself to have made the best decision you can for yourself at this point in time.xoxoxo

@rainwalker The decision is certainly personal and for you to be comfortable with. Your comment "that they are prepared to give me chemo but the benefit is negligible - 1%" certainly must have you saying no probably not!For me it was 3% and I said No and the Onc had said if it was more like 8% I would have convinced you otherwise, but for me 3% benefit negligible. I then asked what else was on offer and we went from there.Best wishes as you sort out what is best for you

Decision time ... | BCNA Online Network

13 Replies

EAA
Member
7 years ago
Congratulations rainwalker.. Brave Heart warrior..
In our ‘ cup of Hemlock’ .. is our cure... At least to stop those little cells subdividing in a malicious way.. Good luck in the healing
of reconstructions.No bosoms reduces your risk.. not that I would
advocate it. All depends if your risks also consider family history,
genetics and Histology Reports. I’m still crying out for my bosoms!
Hoping all goes well for you now and you can celebrate the decision making moment..
oh! One thing.. Do get your eyes checked now.. in starting Tamoxifen
and have regular checks as Tamoxifen can induce cataracts..
no probs.. but Unlike bones, Eyes tend to get forgotten.
iserbrown
Member
7 years ago
Good on you!

Take care
June1952
Member
7 years ago
Congratulations @rainwalker. Decision made - the right one for YOU at this time. Now you can move on with life with a big smile on your face and no burden on your shoulders. All the best. <3
rainwalker
Member
7 years ago
Thanks everyone :smile: After some consideration, I've decided to not have chemo but to take Tamoxifen and see how I tolerate it. Thanks again x
TonyaM
Member
7 years ago
Hi rainwalker, whether to have chemo can depend on your pathology (ie was it aggressive?) and if any lymph nodes were cancer +ve.I’m assuming it was ‘no’to those questions and if your dr is leaving it up to you then you probably don’t HAVE to have it.There are no guarantees either way and ultimately you have to go with what sits comfortably with you and then have no regrets knowing that you made the best decision for YOU at the time.
Sister
Member
7 years ago
No problems @Blossom1961 I must admit that I wasn't focusing so much on the numbers, but more the sentiment so I didn't put a rider on it.
Blossom1961
Member
7 years ago
@Sister That is 10% not 1%. Sorry to be contrary.
Sister
Member
7 years ago
I found it. I'm not suggesting that it should change your mind but it does help clarify things, I think...

Purely on the statistical side, for me, when faced with the same decision as you now are, I looked at it from different angles. One of the scenarios for me was this. I was in a room with 1000 women who were told that they had been diagnosed with my type and grade of breast cancer. We were all told to have such and such surgery, which we did. We were then taken back to that same dreaded room and given a card with a number. Then 830 numbers were read out, and those women were allowed to leave the room and go next door for a celebratory cup of tea and slice of cake....considered cured (10 years). The other 170 shocked women looked at each other with dread. Just then the compere said...."Oh sorry, I forgot, I have another 70 numbers to draw, that is the women who had additional chemo, they can pick up their bags and join the others". If, perchance I was one of the 100 left behind to the future of stage four, would I wish that I might have been one of the other 70, or would I go "Que Sera Sera..." and accept it? For me the answer was "Fuck no" bring it all on, and if the wheels still fall off, at least I would have given it my best shot, and not have been left with the perhaps..." Each of us has to weigh it all up, make our decisions and then go forward. As Afraser says, having started chemo, you can always stop. But it doesn't work the other way. Best of luck. (Author: AllyJay)
Afraser
Member
7 years ago
I had a cancer-unrelated procedure that went wrong. 1 in a 1000 chance everyone said. Mine was fixable. The odds look great but we all assume we are in the big number! If chemo
becomes too difficult, you can stop. Best wishes whatever you choose.
kmakm
Member
7 years ago
Everything the gals above have said. For me it comes down to the regret thing. If you fall into the one percent group (10 people in 1000) who's cancer comes back, will you curse and bewail your decision to not have chemo? If you have chemo and you are left with permanent damage, or take years to recover, will you curse and bewail your decision to have it?

It's all about knowing yourself and what you'll be comfortable with should it all go wrong.

I had the Endopredict test and was at 17% risk so it was a no brainer for me. Good luck. K xox