A decision on chemo

My name is Clare and I am 29, i got diagnosed with breast cancer at the end of may. Dcis 3.5cm with microinvasion, grade 3 hr pr neg her2 positive. When I first got diagnosed I got told I needed, mastectomy,radiotherapy and chemotherapy. I had my mastectomy at the beginning of June. After the mastectomy I got my results the week after and got told they had removed everything and that was it, we were done!! As happy as I was at the time I soon began to wonder what had changed?!? I immediately became worried about it coming back with no further treatment. I went to see the oncologist on Friday to discuss what had changed and basically I got told that my age, the grade and the her2 status pointed to have further treatment it was just the size of the invasive cancer (tiny) that didn’t. After I explained that my fear was reoccurrence he said the 10% benefit of doing the chemo would be worth it and to go ahead and do the chemo and herceptin. I have to go back this Friday with my decision.
Like I say I am 29 I have 3 babies, age 4, 2 and 4months. If the cancer came back I don’t think I could forgive myself for not doing everything I could to prevent it.
My question is am I being too extreme if I take the decision to do the chemo (i am swaying more to doing it) or would you do the same in my position? I just feel I shouldado everything I possibly could to helpprevent me being in this position again. I know there are no guarantees in life and if it did come back after I had done the chemo at least then I could say I tried. All if’s and buts. I am so confused :frowning:
Clare xx

Hi Clare
I am a lot older than you so hope you dont mind me commenting, but I think you have answered your own question! If chemo feels right for you and you wouldn’t feel you had done everything if you hadn’t had it then that’s what you need to do. A 10% benefit is quite high I would think.
It is a diificult decision that only you can make but you will make the right one for you.
Good luck with whatever you decide
Jill x

Hi Clare and welcome to the BCC forums

In addition to the valuable support here you may find it useful to call our helpliners to talk through your queries, the team are here to offer you a listening ear on 0808 800 6000. Lines open weekdays 9-5 and Saturdays 10-2.

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Hi Clare
I am so sorry you are having to join us but you will find so much love, encouragement and support on these forums.
I am replying to your thread because I feel my own situation and diagnosis has a lot of similarity.
In February this year, I had a WLE and a SNB for a grade 2, small tumour with some DCIS spread. My nodes and margins were clear so I thought rads (always done after WLE) would see me done and dusted.
However, I too am HER2+ and regardless of how early the initial tumour was caught, being HER2+ significantly increases my risk of recurrence.
In the UK, Herceptin (the treatment for HER2+) is always given after chemo for primary adjuvant treatment. I was mortified. But then my onc explained that although it was very unlikely any cancer cells had left the primary area, cells can also spread through the blood, not just the lymph, and all it takes is one tiny micro-cell to start it all off again.
He told me the chemo was belts and braces - just in case there is an odd cell lurking - and the herceptin would change the environment so the cells don’t mutate again and become cancerous.
I couldn’t have lived with the uncertainty of wondering if I had done everything I could. Herceptin treatment is very expensive, they wouldn’t give it to us if they didn’t think there was a significant benefit.
Chemo is crap - lets be honest here. But last week saw me finish my last chemo and I am glad i did it, the journey was never a solitary one and i have made some wonderful friends through this forum.
The decision you make Clare has to be the one that is right for you and the one you can live with long term. My love and thoughts are with you.
Pixie xx

Hi Clare, 

I felt I had to reply to you as I am in a very similar position.
My cancer was IDC, 2.1cm, Er+ and HER -ve
I’m older than you at 45, and have 2 children, one of whom is autistic.
I met with the oncologist on Monday and was told that Chemo gave me a 5% benefit.

I have decided to go for it. I’m fit and otherwise healthy. I cannot bear the thought of thinking that I might have prevented a recurrence if I opted not to.

Many of my friends say they would do the same but a couple think I’m bonkers! Hey ho!!

It’s a really really difficult decision and one that only you can make with support your family and advice from your oncologist. 
Don’t be swayed by me… This is the right choice for ME, not for everyone.

I cannot tell you the relief I felt once I’d made my decision!!!

I know that you will make the right decision for YOU, and you will probably feel like a huge weight has been lifted from you when you do

Let us know how you get on

S xxx

Hi Clare,
I am trying to make a similar decision to you. My lump was 21mm, ER positive and HER2 positive, grade 2. Clear margins and clear nodes (4 removed in total) son Stage 1. I’m 40 and otherwise fit and healthy. My oncologist told me that without the HER2 my benefit from chemo would be just 2-3 percent. With the HER2 she adds 3-4 percent to that (although that is just an educated guess - they don’t have enough clinical trials to really have a fixed figure). To have the herceptin you have to have chemo as it is not considered effective enough on its own. This seems to be the reason for recommending the chemo because you can’t have the herceptin without it. My main concern is with the side effects - not just from the chemo but also the herceptin. I’ve been erring on the side of just having the tamoxifen and radiotherapy because I worry that the risk of longterm side effects isn’t worth the small benefit of the herceptin. But as you say, the worry is the cancer will return and along with the regret that the treatment might have prevented it. One thing that has been suggested to me is that some people take reduced cycles of chemo (2) which means they can still have the herceptin and its benefits. At the moment I’ve been recommended the standard 6 cycle chemo but I think I’ll discuss this option with my oncologist.
I guess even with all the treatment, nothing is 100 percent guaranteed. Without it, the odds are still very good. It’s a tough decision. I’m torn at the moment.

I know it is a very difficult decision to decide on chemo and/or Herceptin as it is almost like purposely decidiing to make yourself feel ill. Just thought I would add my view as someone who is out the other side of treatment.
I was Her2+ when diagnosed in 2010 and had chemo followed by 12 months of Herceptin. Yes the chemo was horrible, no denying that - I had it dose dense so it was even worse. And yes the thought of Herceptin every 3 weeks for a year made it seem like it would drag on for ever. But once I had finished the chemo, had surgery (WLE, clear margins and no nodes), then radio, I went back to work full time and just got in to the routine of nipping into the hospital every 3rd Wednesday for an hour in total for the infusion and then going to work.
I had no side effects from the Herceptin other than slight tiredness, everything was just a bit more of an effort, but it didn’t impact on day to day life, so it was fine.
Knowing what I know now I would do exactly the same again. Herceptin is such a wonder drug, and so many ladies still can’t get it, we are lucky that we can, and Her2 tumours are so much more likely to recur than any other, I feel I would be really missing out on a vital part of the treatment if I had said no.
Interestingly I had more problems with Tamoxifen than Herceptin so much so that my onc took me off it.

Thank you all so much for your replies,
I just wanted to say that the benefit of 10% is based on reoccurence, the benefit would be 3.5% in regards to errrrrm death in the next 10 years. I also had snb and it came back clear.

Jill, your age doesn’t bother me :slight_smile: I am happy to hear off anyone and thank you for your response, I do agree that my mind seems pretty made up.

I too heard that about the reoccurrence and that is what I swaying me to take the chemo. I didn’t realise cells could speed to the blood, very useful information. I do realise the chemo will be crap, petrified if I am honest. I do feel it is something I have to face.

Thank you so much, I am honestly not swayed by your decision but comforted, have you started your chemo now?

My chemo would consist of 4 cycles of one type and then another 4 cycles of another, then herceptin for the 12 months (everything 3 weeks apart) let me know how you get on.

Wow reading your experience made me feel so positive, for you to say you would do the same (I hope you never have too) again is comforting.

I can’t thank you all enough for your responses, promise to keep everyone updated and I will let you know how fri goes xxxx

Hi Claire

I also am not young like you, I have a son your age ( who has had a major brain tumour this year) I am aware that it must be so awfull for you to go through this.
I had to decide wether to have chemo or not and decided to do it. If you decide itis the right choice for you, there is a lot of support out there.
I would suggest that you ask them to go through the pros and cons again, do you take someone with you who can digest all the info.
A friend told me that when i made a deciscion I had to remember that it was the right deciscion for me at the time and that I should not then have regrets regardless of the outcome.
Big hugs and best wishes
poppy x

Well having learned of the increased risk of recurrence for HER2 and also the higher benefit to prevent it with Herceptin I think I too will be opting for the chemo route. It’s scheduled to start on 5th September. I’ve been allowed a small delay so I can enjoy my summer holiday that was booked before I found out about BC. In the meantime, I’m on Tamoxifen. Not looking forward to being a proper sick person, but maybe I’ll be lucky and avoid the extreme side effects. All the best with your decision Clare. As others have said whatever you opt for, it will be the right choice for you with the information available.

Hi Claire I am 41 with 3 children aged 5,13 and 15 and I think what swayed my oncologist was my wish to be treated aggressively and my age. My tumour was smallish not lymph involvement grade2 and er positive. I had a bilateral mastectomy 4 weeks ago and a large area of pre cancer was found in the other breast too. Seeing the oncologist on Tues. I feel I cant take any chances and want any little beggars that may be knocking about zapping now!
Good luck Mandy