1. < Breast Cancer

Declining Chemotherapy

Posted by alisa1 @alisa1, Apr 16 9:28am

Hello. I was diagnosed with invasive ductal carcinoma of the right breast. I chose to have a double mastectomy with reconstruction. The oncologist has recommended 4 rounds of chemotherapy.
Has anyone chosen to opt out of chemotherapy for Stage 1, triple negative breast cancer or greater stage/other form of breast cancer?

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frenchtoasted429 | @frenchtoasted429 | Aug 26 10:36am
In reply to @californiazebra "@bpknitter53 Like you, I have a lumpy chest, extra skin on sides (the worst) and concave..." + (show)
@californiazebra

@bpknitter53
Like you, I have a lumpy chest, extra skin on sides (the worst) and concave chest if I raise my arms. Not what I was expecting. My surgeon kept trying to talk me into reconstruction, I declined with certainty, yet I think she left me reconstruction ready thinking I would change my mind. She could have done better for the flat look. Nevertheless, I’m happy with my decision to go flat 11 years ago.

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I was extremely lucky in the surgeon I selected. She was a woman, and absolutely focused on leaving the most "seamless" scar as possible My chest is flat, no extra skin on the sides, and the scar goes from partially under one arm straight across to under the other arm. If anyone is deciding on a double masectomy with no reconstruction, be sure to find a surgeon that completely understands what you want, and you can also ask if they can share photos to show you of past surgeries they did. After this surgery, the oncologist discussed with me the pros and cons of chemo, and in my case, there was only a 5% increase in benefit, which did not offset the actual time that would be needed for treatment, and more importantly, the recovery time which I know from personal experience could be maybe five years - it wasn't worth the 5% benefit to lose that amount of time when I want to travel and feel healthy (I'm 74)

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hopeful2024 | @hopeful2024 | Aug 26 10:51pm
In reply to @hopeful2024 "May you continue to be blessed with peace on the journey! I will be thinking of..." + (show)
@hopeful2024

May you continue to be blessed with peace on the journey!
I will be thinking of you !
Maura Hein

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Hopeful you are doing well !!
Went to church this am prayed for you !
Maura

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catlover2020 | @catlover2020 | Aug 27 1:18am
In reply to @rosa1935 "I had stage 3 and had a lumpectomy. Oncologist recommended 4 chemos. I was nearing my..." + (show)
@rosa1935

I had stage 3 and had a lumpectomy. Oncologist recommended 4 chemos. I was nearing my third chemo when I collapsed in supermarket and spent 5 days in hospital. I’ve never been so sick!! I decided, when in hospital, to have no more chemo and I got my 3 year clear mammogram last May. It’s a purely personal decision. Best of Irish ☘️ luck x

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I feel my body will reject tamoxifen and twice a year infusion of zometa.
I've been in this body over 60 years.

Congratulations, so happy for you

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meg55 | @meg55 | Aug 28 2:07pm
In reply to @alisa1 "I did a double mastectomy (1) because I had dense breast tissue, (2) because I did..." + (show)
@alisa1

I did a double mastectomy (1) because I had dense breast tissue, (2) because I did not want the concern of cancer developing in the other breast, and (3) for aesthetic reasons, as I did breast reconstruction.
I will say, you MUST be ready for reconstruction. It is a rigorous process. However, the double mastectomy was the best for me personally.

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I’m choosing double mastectomy for the same reason… dense breast tissue, 3 lumpectomies on one side, still can’t get a clear margin. I said let’s just get rid of them both! I’m choosing to go flat but my surgeon said because I have larger breasts and one incision will need to be vertical ( due to location of cancer) , I will probably need some revision. Not thrilled about that.

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1 reply
meg55 | @meg55 | Aug 28 2:17pm
In reply to @kedisaacs "Thank you for sharing. It helps to hear people's thoughts. I have decided to do a..." + (show)
@kedisaacs

Thank you for sharing. It helps to hear people's thoughts. I have decided to do a double mastectomy. Surgery is set for tomorrow.

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When you are feeling up to it, would love to hear how your experience is. I’m scheduled for October. A bit worried about recovery.
Best of luck to you!!

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einnoc | @einnoc | Aug 29 1:55am
In reply to @meg55 "I’m choosing double mastectomy for the same reason… dense breast tissue, 3 lumpectomies on one side,..." + (show)
@meg55

I’m choosing double mastectomy for the same reason… dense breast tissue, 3 lumpectomies on one side, still can’t get a clear margin. I said let’s just get rid of them both! I’m choosing to go flat but my surgeon said because I have larger breasts and one incision will need to be vertical ( due to location of cancer) , I will probably need some revision. Not thrilled about that.

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https://mydensitymatters.org/programs/my-story-matters/
Re dense breasts.

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1 reply
bpknitter53 | @bpknitter53 | Sep 5 3:02pm
In reply to @kedisaacs "Thank you! Do you know what the TNBC recurrence rate in the other breast is? Do..." + (show)
@kedisaacs

Thank you! Do you know what the TNBC recurrence rate in the other breast is? Do you have any links that you could send me? I would greatly appreciate it.

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@kedisaacs - sorry for the delay in responding but most of the information I've used to base my decisions on are from the National Library of Medicine - for TNBC. It's kind of hard to read through - but I've finally been able to decipher some of the initials they use in the article - this is the link for the one I read about TNBC - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8999097/#:~:text=When%20studying%20the%20results%20of,%E2%80%93%2045%25%20and%2069.1%25%2C if the link doesn't work find the National Library of Medicine and search TNBC. I hope this is helpful - just an FYI - I do not have a medical background - but with time and effort I was able to make sense of the article.

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