Has anybody rejected Chemotherapy?

Too-Ticky

I've had a mastectomy. I plan to agree to the proposed radiation therapy to my chest wall, axillary and supraclavicle lymph nodes. And agree to shutting down my ovaries with an injected drug, plus 5-10 years of an aromatase inhibitor.

However, my Oncologist wants me to also have chemotherapy just in case the cancer recurs elsewhere in my body in the future. She said chemo will add a possible 9.5% increased likelihood of survival after 10 years.

I do not want to have chemo. On top of all the other treatments and their side effects, and some chronic health conditions that I already live with, it's too much.

Has anybody turned down chemo or any other aspect of their proposed treatment plan? What were your personal reasons, and how did you rationalise it to the doctor?

1Greekmomma

Hey Too-Ticky,

Node positive disease almost always comes with the recommendation for chemo. I did the AC portion of my chemo but refused the Taxol.

My tumor completely disappeared. No invasive cancer in my breast upon post-mastectomy pathology. Micromets in my lymph nodes. Considering that ER+ cancers typically don't have a complete pathological response to chemo anyway, I am at peace with my choice to forgo 3 additional months of weekly chemo.

Radiation starts tomorrow!

All the best!

moth

You are very young - 46, right? I'm imagining you want 40+ yrs, not 10. & ILC is *sneaky*

As a person who did it all & still had it recur in another part of the body- which just to be clear, is terminal diagnosis with median survival of 2-3 years - I would encourage you to really take your time with this decision. IME, chemo is not that bad (I'm on IV chemo contnuously now for 19 months & just getting ready to head out for a long walk with my dog) & most side effects are well managed.

you only get one chance to kick it to the curb for good. Are there specific issues that we can help you feel better about? Is your MO aware of your hesitancy?

Too-Ticky

Well done for making a difficult decision, @Greekmomma and being at peace with it.

When I discussed my decision and its justifications with my Senior Oncologist earlier this week, she accepted them and told me that my particular cancer may not have responded to chemo anyway. Which seems to support your thoughts about responsiveness of certain cancers.

And she acknowledged that my comorbid chronic health conditions would probably impact the severity of my long term and late side effects - which are a big deal to me and to my quality of life. I know what it is to live with crippling fatigue, and neuropathy that impairs function. And I know what it's like to have years of treatments, suffer side effects, and then be given additional treatments for those side effects that in turn have side effects. It's not my idea of wellbeing - for however long I have left.

I've been offered a 4 prong treatment plan and I have accepted 3 of the 4 (mastectomy (completed), radiation, hormone therapy) and that's enough cumulative and life-changing side effects and hardship for me.

I feel at peace with my decision.

Good luck with your radiation treatment, Greekmomma. I'll be thinking of you. My set-up assessment appointment for radiation should be in about a week, and then I'll be starting radiation therapy shortly after that.

Racy

In your position, I would consult for a second opinion due to the size of your tumour.

1Greekmomma

Thanks Too-Ticky!

Had my second session today. So far so good. Nice little 15 minute nap on a rotating table lol. I see you're a "rightie" also, so you won't have to do the breath-holding thing.

Interestingly enough, my oncologist also mentioned how lobular doesn't respond all that well to chemo either. The discussion came up because I never had my actual tumor biopsied! This 26mm by 16mm mass was MISSED by both mammogram and ultrasound. It was the enlarged lymph nodes that sent me to the doctor in the first place. Picked up on MRI, but too close to the chest wall so a core biopsy was a no-go. I only know what I know due to lymph node biopsy and post-mastectomy pathology (which showed scattered atypical hyperplasia/DCIS, grade 2). Technically I have no idea what my tumor pathology was and because it evaded screening I assumed lobular (because as has been mentioned, it's the sneakier cancer) but my oncologist had her doubts about that seeing as the tumor responded so well to chemo.

It's a tough road either way, and frankly, there are no guarantees. You can do EVERYTHING to the T and still have recurrence or metastasis. My husband and first oncologist (I've had three in 8 months - due to relocation, not me being difficult, I swear! LOL) were NOT happy about me skipping Taxol but I just did not want to go through another 3 months of chemo for a few extra percentage points of survival (depending on the study, anywhere from 1-5%). Of course, If I was HER2 positive or TN (which are more aggressive cancers and have a much better Taxol response), I may have sang a different tune but having endocrine therapy in the mix, which oncologist number 2 said was most important after surgery, it was easier to come to the decision I did.

None of this is easy (what life or death decisions are?), and I sincerely wish you all the best. I completely understand you weighing up quality vs quantity of life, and to each it will be a different priority.

May complete remission be in your future!