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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@alisa1

Understood. I had some reservations like this initially. However, mentally and emotionally, I could not look at one healthy breast with the thought of "what if it comes in the other breast then I am back under the knife again". I think it would have been very overwhelming. In doing the double mastectomy, that too assisted with that.
You are correct, you can be monitored and it is your decision. You must do what is best for you. In my journey, I find that this impacts each person differently. A lot of support groups, when they get to discussing chemo/radiation and medication...I cannot relate and look to find those most closely relating to my own journey. It's tough but you will get through this!

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Thank you for sharing.

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@kedisaacs

Hi,
Can I ask why you decided to do a double mastectomy when it was only in one breast? I have triple negative in my left breast; however, the doctor said that I could do a double but it was not necessary. I am considering doing a double and trying to find the best preventative treatment.
Thank you!

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Hi
I had a double mastectomy last October 2023
My Mother the same age as I was when she had the right breast removed 5 years later she had the left breast removed same cancer
I have her pathology report
Dcis …..
I was very much at peace did not require any further treatment !
I am absolutely flat and I am doing great !!
I never looked back !!!
I wanted to live my life in peace !!
No one cares including me that I don’t have breasts !! Find great tops !!
God Bless !!!
Hopeful2024

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@hopeful2024

Hi
I had a double mastectomy last October 2023
My Mother the same age as I was when she had the right breast removed 5 years later she had the left breast removed same cancer
I have her pathology report
Dcis …..
I was very much at peace did not require any further treatment !
I am absolutely flat and I am doing great !!
I never looked back !!!
I wanted to live my life in peace !!
No one cares including me that I don’t have breasts !! Find great tops !!
God Bless !!!
Hopeful2024

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

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@kedisaacs

Thank you for you response!!. My doctor told me it was up to me whether to do the double mastectomy. She told me that they could just really monitor me. The decision is hard. I don't want it to come back, but I also don't want to do the other breast if I don't have to.

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I had a lumpectomy in my left breast in 2005. In 2024, I had a recurrance of cancer in that same breast, and a masectomy was recommended because I did not want to go through chemo and radiation again. I chose to have a double masectomy so I don't have to worry about breast cancer going to the healthy breast at some future date. I do not have to have chemo or radiation. Many women I know who have had a masectomy- just one breast - have struggled for many years with a prostetic for just one breast, or have opted to have reconstructive surgery, which is not a quick fix and involves more surgeries, etc., and the results are not always that great which could involve more surgeries, especially if you have unrealistic expectations. It's a very personal choice. My main consideration was avoiding, at all costs, going through chemo and radiation again. After my experience in 2005, I will say that the "healing" process from chemo takes years... I didn't feel "right" until at least 6 years had passed, and some physical changes that happened during chemo became permanent and never improved, I just had to learn to live with them. Good luck on your journey, it is my belief that what age you are right now will help make your decisions of what path you want to follow for your futur years.

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@hopeful2024

Hi
I had a double mastectomy last October 2023
My Mother the same age as I was when she had the right breast removed 5 years later she had the left breast removed same cancer
I have her pathology report
Dcis …..
I was very much at peace did not require any further treatment !
I am absolutely flat and I am doing great !!
I never looked back !!!
I wanted to live my life in peace !!
No one cares including me that I don’t have breasts !! Find great tops !!
God Bless !!!
Hopeful2024

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my story is similiar, but my breast cancer recurrance in the same breast was almost 20 years apart (a good run!) - I had a double masectomy and feel more than flat (if that is possible, my surgeon did a fantastic job, extremely even and flat scar, but I am still healing since surgery was only 3 months ago). No chemo, no radiation - and no more mamograms! (although I have been told to still always check breast area/chest for any irregularities on a continuous schedule) I am opting for prosthetics that are very custom made, and the manufacturer recommends a minimum of six months to a year before they are designed and fitted exactly for the specifics of your scar and the varying degrees of depth of the scar. I didn't want to go through additional surgeries for reconstructive - I'm happy with my decision.

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@bpknitter53

@kedisaa - I was dx TNBC and BRCA2+ and in my research TNBC has a high recurrence in the other breast. I chose to eliminate that chance by removing both breasts and going flat. I'm perfectly happy with "flat" with the exception that my definition and the surgeon's definition were different - I should have taken a picture and said this is what I'm looking for - can it be done. I have indents in my chest and some excess skin on the sides. When I was fitted for my prothesis, I was asked when I planned to have reconstruction. Apparently some of the excess skin is left if you plan to have reconstruction - which I did not plan.

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@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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@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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Prayers that all goes well with your surgery and recovery.

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@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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Prayers for a successful surgery and speedy recovery.

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@frenchtoasted429

I had a lumpectomy in my left breast in 2005. In 2024, I had a recurrance of cancer in that same breast, and a masectomy was recommended because I did not want to go through chemo and radiation again. I chose to have a double masectomy so I don't have to worry about breast cancer going to the healthy breast at some future date. I do not have to have chemo or radiation. Many women I know who have had a masectomy- just one breast - have struggled for many years with a prostetic for just one breast, or have opted to have reconstructive surgery, which is not a quick fix and involves more surgeries, etc., and the results are not always that great which could involve more surgeries, especially if you have unrealistic expectations. It's a very personal choice. My main consideration was avoiding, at all costs, going through chemo and radiation again. After my experience in 2005, I will say that the "healing" process from chemo takes years... I didn't feel "right" until at least 6 years had passed, and some physical changes that happened during chemo became permanent and never improved, I just had to learn to live with them. Good luck on your journey, it is my belief that what age you are right now will help make your decisions of what path you want to follow for your futur years.

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Thank you for sharing this. Since this thread is about deciding to take chemo or not, I found that it helps further that discussion.
I also took chemo and radiation. Although I felt like I had done everything I could do stop this cancer, it certainly wasn’t easy.
Everyone’s decision making is different, but when i made my decisions 20 years ago, I thought about what the side effect of not stopping this cancer might be.
I think as targeted treatments and genetic testing gets better and better, less women are having to make this decision about chemo. If you are diagnosed today, you probably meet more women who have not had to take chemo than I did 20 years ago. We have come a long way.
Did your age at time of diagnosis affect your decision?

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