has anyone not had chemo after double mastectomy?

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I am 36yrs old with a 20mm grade 3 ER weakly + tumour in my left breast.(PR-,HER2-)
I have had a double mastectomy with 6 lymph nodes removed.
Results came back clear.
The tumour had not invaded my blood vessels or milk ducts.
I had a CT scan from my neck to my pelvis which was also clear.
I have also had a hysterectomy.(i am very lucky to have 3 gorgeous boys)

So my question is:so why have chemo as a just in case measure?
Has anyone else recovered without medical treatment?

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Hi
Obviously I am not an oncologist and your team are the best people to talk this through with as they will have a good understanding of your particular cancer. We all seem to get our own bespoke version. However looking at the information you have given I can see some reasons why chemo would be a good idea.

  1. Grade 3 is agressive ( but reponds well to chemo)
  2. Cancer is sneaky and does not always show in nodes or through vascular invasion ( although these are good indicators)
  3. You are young your cells divide quickly- so can the cancer ( I am 38 my onc explained this to me)
    4, Your tumour though not big was not tiny either
    5, You are young and have longer for it to recurr
    6, Your cancer is only weakly er+ therefore may not respond well to tamoxifen- so could act like a triple negative cancer which does respond well to chemo.
    7, You have an early stage cancer and the chance to deal with any stray cells now rather than face a recurrance in the future.

I would suggest you ask your onc to go through adjuvant online with you and explain what benefit chemo would have for your cancer. Like I said I am not an expert at all. These are just bits of information I have picked up on my journey. ( age 38,Grade 2 1.9 cm tumour. 1 node, ER-PR- HER2+++ vascular invasion, about half way through chemo)

I understand we are all faced with really tough decisions so please make sure that you hve all the information you need before, so that you are confident with whatever you decide. I have only given one side of the story and there may be others who can give you their experiences, where they did not have chemo. Good luck debx

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Hello

It depends how you want to go about deciding on treatment. I decided to use statistics when I was diagnosed (history: age 32, grade 2, 7mm, no nodes, no vascular invasion, ER++ PR++ HER2-).

I was given less than 1% increase to my chances of being alive in 10 years if I had chemotherapy, tamoxifen and radiotherapy. Therefore, I decided against them all. I should point out I hadn’t had children, and really wanted a family.

5.5yrs down the line, 1 baby and mid-pregnancy later, I have a recurrence in the lymph nodes (3 nodes with extracapsular spread).

Despite the recurrence, I would not change my decision the first time. The chemotherapy probably would not have made any difference: the cells have been dormant for 5 years and for the chemotherapy to have an effect, they have to be dividing.

This time I’m going for chemotherapy and hoping that any remaining cells are busy right now, but it’s very different because it’s in my nodes.

Good luck, it’s such a hard decision to make. I do feel I was vilified for declining chemotherapy first time round, even though all the consultants agreed it probably wouldn’t do anything to help me.

xxxxx Jane

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Thanks for your reply’s Deb and Jane i found them very informitive.
My heart goes out to you both and i wish you all the best with your treament’s Am xx

I have seen two oncologist’s both promoting chemo,but with such low odds that it will actually work, and with such high risks of the chemo toxins damaging DNA cells causing other cancers i just feel it’s a high price to pay for a ‘just in case’ measure.

However i do also feel it is a HUGE gamble and only time will tell if i have made the right call.I do feel a bit out on my own while cancer seems to = chemo in all cases if you have tumours or not.I just wish there was more out there to repair our very clever immune system to heal ourselves rather than blast it with nuclear chemicals to kill it.

I am no expert! so it’s scarey stepping into the unknown.

I think all the ladies fighting this terriable disease having chemo our incrediably brave.My love goes out to you all Am xxxxxx

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I am also interested in any answers to this question. I am about to have a double mastectomy and lymph nodes removed on one side, and I’m fine with that. However, I am on lithium for bipolar disorder and have been mentally well on this for 20 years, so I don’t want to stop it, but I’ve heard that chemotherapy can cause a bad reaction with lithium. So I wonder whether I could get by without chemo.

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Hi Cutenewt,
First of all, welcome to the forum. This is an old thread & this part of the forum tends to be quieter, so it maybe an idea to post on the ‘ask our nurses’ board especially in view of your medication query.
Wishing you the very best with it all
ann x