Chemotherapy doubts: Male breast cancer

Posted by agingrobert @agingrobert, Oct 2 12:18pm

I’m looking for opinions. I was diagnosed with stage 3 breast cancer. As a male, I learned there are no statistics related to male breast cancer because it’s so rare. My odds of non-recurrence in 5 years are 60 percent, post-tumor removal, which was done. My odds improve only by 15 points, to 75 percent, if I undergo 20 weeks of chemotherapy, radiation, and hormone therapy. These numbers are based on WOMEN who were diagnosed with the same cancer, so I don’t have much faith in the accuracy of the numbers. I’m at week 6 of the Taxol toxin and it is taking its toll. I’d like to learn if there’s any knowledge out there related to the impact of discontinuing my chemotherapy after Taxol (12 weeks), and not undergoing the A/C toxins for the last 8 weeks. The A/C toxins present far more risk of permanent damage to my body, and my gut is telling me that the “cure may be worse than the disease”. Regardless of my decision on chemotherapy I would still do the radiation and hormone therapies but thinking to eliminate the A/C. Just looking for more information to learn if anyone knows of trials or research related to the use of Taxol only for breast cancer. Thanks, in advance, for sharing.

@agingrobert
So sorry, Robert, for your trouble. You may find the following article from the World Journal of Surgical Oncology to be of interest to you, noting many of the complicating factors which affect treatments for male breast cancer: https://wjso.biomedcentral.com/articles/10.1186/1477-7819-6-58

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We’re you tested for the BRCA genes? I am currently on my 3rd cycle of 4 on AC and then will do 12 weeks of taxol. All I can say is that for me, that any increased risk of MBC is too much for me. I’m 38 and have 3 kids 6 and under. Also I’m not sure if all male breast cancer is triple negative (I’m just guessing because of the lack or female hormones) but the limited options for treatment upon reoccurrence definitely scares me to no end.
Not sure if I’m helping at all but good luck in whatever you decide.

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@ahurlbert30

We’re you tested for the BRCA genes? I am currently on my 3rd cycle of 4 on AC and then will do 12 weeks of taxol. All I can say is that for me, that any increased risk of MBC is too much for me. I’m 38 and have 3 kids 6 and under. Also I’m not sure if all male breast cancer is triple negative (I’m just guessing because of the lack or female hormones) but the limited options for treatment upon reoccurrence definitely scares me to no end.
Not sure if I’m helping at all but good luck in whatever you decide.

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Many thanks for your response. I'm on week 7 of Taxol and then begin the 8 weeks of AC, so it's the same treatment as yours but in reversed order. I'm 66 and do not have any BRCA genes associated with MBC. Nor do I have a family history of MBC. It came out of nowhere. My estrogen and progesterone receptors are positive, which I'm told is a good thing because after chemo I begin a 5 year prescription of hormone therapy which is designed to "starve" this particular cancer and hopefully keep it at bay. That being said I only have a 70 percent chance of surviving 5 years, so it's scary. We both have much to live for. I'm still very concerned about the long-term health risks associated with AC, so trying to learn more about it before I begin. Taxol has not been bad, so far. I learned much from a new friend, a cancer researcher in San Diego. Too much to type but if you ever want a conversation I'm open to share what I learned from him. Best of luck on your journey. I hope we are both on the right path. All the best, -Robert

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@agingrobert

Many thanks for your response. I'm on week 7 of Taxol and then begin the 8 weeks of AC, so it's the same treatment as yours but in reversed order. I'm 66 and do not have any BRCA genes associated with MBC. Nor do I have a family history of MBC. It came out of nowhere. My estrogen and progesterone receptors are positive, which I'm told is a good thing because after chemo I begin a 5 year prescription of hormone therapy which is designed to "starve" this particular cancer and hopefully keep it at bay. That being said I only have a 70 percent chance of surviving 5 years, so it's scary. We both have much to live for. I'm still very concerned about the long-term health risks associated with AC, so trying to learn more about it before I begin. Taxol has not been bad, so far. I learned much from a new friend, a cancer researcher in San Diego. Too much to type but if you ever want a conversation I'm open to share what I learned from him. Best of luck on your journey. I hope we are both on the right path. All the best, -Robert

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@agingrobert, I'd like to add my welcome and invite @mondayskipper @racing212 and @wolfbauer into this discussion to share their experiences with treatment for male breast cancer and the choices they made.

Robert, you're obviously someone who does their research. Have you discussed your thoughts about foregoing AC with your cancer researcher friend and your oncologist? I'd be interested to hear their thoughts about risks vs benefits.

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Hello Colleen and thanks for the warm welcome. I had many questions for my cancer researcher friend and I did him about the various toxins involved with Chemo, Why 12 weeks of Taxol? Why not 13? Why A/C and Taxol? Aren't they supposed to do the same thing? Assuming these toxins do what they are supposed to, why will I still require radiation? His answer was simple, "everyone's body and cancer are different. treatments throw as much as possible at the cancer in hopes of killing and controlling it, without damaging your body, longer term". I learned from him that It's possible I could survive just as long without undergoing chemo at all, but chemo increases my statistical odds. That was his perspective. I also learned how much we still do NOT know about cancer, and that my cancer WILL return, eventually. It's genetically here and not going away so the trick is to keep it at bay…..and I then get more years. I also learned that other forms of cancer could exist in my body that haven't become tumors yet because my current cancer might be starving those cells. When I was diagnosed with Stage 3 Male Breast Cancer my Oncologist prescribed a "cure" strategy for treatment versus a "control" strategy. I've since learned that these terms are probably not accurate because my cancer will not literally be cured, it will hopefully be controlled. Getting back to my original question about foregoing AC- I worry about nose bleeds associated with AC. Long story, but I have an artery in my sinus area that was weakened by surgery many years ago. If it ruptures I will bleed to death because it cannot be reached. I need to decide if I pass on the AC, or risk bleeding to death. AC can also do permanent heart damage which is another concern of mine, however my heart is strong.

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I am curious about your statement from your researcher that your cancer WILL eventually return. Is that specific to your cancer or all cancers? Did you have lymph node involvement? You say it is genetically in your body. Did you get gene testing done? This is all very curious. I will speak to my oncologist about it.

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Yes, my lymph node(s) were affected, hence stage 3 and not stage 2. To be as transparent as I can, much of what my researcher shared with me was over my head and very technical so I had to ask more clarifying questions. He is a smart dude. While I do not have the BRAC genes which tie me to a genetic disposition for MBC the cancer mutations can still happen, and did happen. I've cut and pasted one of his clarifications here. I hope this is helpful, "Cancer is a normal cell that has collected several mutations over time. Some are / can be inherited, others created as cells replicate and an error in DNA copying happens, and due to environmental damage to DNA. T cells start as newborn almost T cells in the bone marrow then migrate to the thymus where they are matured/converted to one of several types of immune T cells. Mutations in either organ will lead to a type of cancer. The T cells are a result of the mutations in the marrow or thymus. Without a total replacement (not easy if at all possible) this means the cancer mutation will continue…".

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Hi Robert, I was diagnosed in April with stage 3 ovarian cancer. The survival rate on average for this disease is pretty low. I have found a tremendous amount of support from national advocacy groups. Really good explanations on research studies and treatment options. Same information I receive from my doctor, but within a support network that helps offer explanation and context. Just doing a quick search for you, I found a couple sites I wonder if you have accessed yet? I think you have to trust your instincts. Looks like you are seeking guidance/input/direction, which is all so good. From what you have received so far, what are you leaning towards? Looks like you are willing already to receive a wide variety of treatment options. Trust what you think is best for you. Take Care!

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@dianainstaug

Hi Robert, I was diagnosed in April with stage 3 ovarian cancer. The survival rate on average for this disease is pretty low. I have found a tremendous amount of support from national advocacy groups. Really good explanations on research studies and treatment options. Same information I receive from my doctor, but within a support network that helps offer explanation and context. Just doing a quick search for you, I found a couple sites I wonder if you have accessed yet? I think you have to trust your instincts. Looks like you are seeking guidance/input/direction, which is all so good. From what you have received so far, what are you leaning towards? Looks like you are willing already to receive a wide variety of treatment options. Trust what you think is best for you. Take Care!

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thanks so much Diana. I didn't see the mentioned sites attached to your post, but I'm very interested so let me know where to find them. I sincerely hope you beat the odds and survive this thing. Prayers coming your way. -Robert

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@dianainstaug

Hi Robert, I was diagnosed in April with stage 3 ovarian cancer. The survival rate on average for this disease is pretty low. I have found a tremendous amount of support from national advocacy groups. Really good explanations on research studies and treatment options. Same information I receive from my doctor, but within a support network that helps offer explanation and context. Just doing a quick search for you, I found a couple sites I wonder if you have accessed yet? I think you have to trust your instincts. Looks like you are seeking guidance/input/direction, which is all so good. From what you have received so far, what are you leaning towards? Looks like you are willing already to receive a wide variety of treatment options. Trust what you think is best for you. Take Care!

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Hi @dianainstaug, welcome to Mayo Clinic Connect. I noticed that you wished to post a URL to web resources with your message to @agingrobert. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the links you wanted to post are not spam, so allow me to post them here.

– Treatment for Breast Cancer in Men https://ww5.komen.org/BreastCancer/MaleBreastCancer.html
– HIS Breast Cancer https://www.hisbreastcancer.org/

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@colleenyoung

Hi @dianainstaug, welcome to Mayo Clinic Connect. I noticed that you wished to post a URL to web resources with your message to @agingrobert. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the links you wanted to post are not spam, so allow me to post them here.

– Treatment for Breast Cancer in Men https://ww5.komen.org/BreastCancer/MaleBreastCancer.html
– HIS Breast Cancer https://www.hisbreastcancer.org/

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Hi Colleen thank you for reaching out to me! Isn't that funny my first post in this discussion was actually not about me really at all! :O) I do have a question but don't want to put it in Robert's thread. I will do a new one now! Thanks Again

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@agingrobert

Hello Colleen and thanks for the warm welcome. I had many questions for my cancer researcher friend and I did him about the various toxins involved with Chemo, Why 12 weeks of Taxol? Why not 13? Why A/C and Taxol? Aren't they supposed to do the same thing? Assuming these toxins do what they are supposed to, why will I still require radiation? His answer was simple, "everyone's body and cancer are different. treatments throw as much as possible at the cancer in hopes of killing and controlling it, without damaging your body, longer term". I learned from him that It's possible I could survive just as long without undergoing chemo at all, but chemo increases my statistical odds. That was his perspective. I also learned how much we still do NOT know about cancer, and that my cancer WILL return, eventually. It's genetically here and not going away so the trick is to keep it at bay…..and I then get more years. I also learned that other forms of cancer could exist in my body that haven't become tumors yet because my current cancer might be starving those cells. When I was diagnosed with Stage 3 Male Breast Cancer my Oncologist prescribed a "cure" strategy for treatment versus a "control" strategy. I've since learned that these terms are probably not accurate because my cancer will not literally be cured, it will hopefully be controlled. Getting back to my original question about foregoing AC- I worry about nose bleeds associated with AC. Long story, but I have an artery in my sinus area that was weakened by surgery many years ago. If it ruptures I will bleed to death because it cannot be reached. I need to decide if I pass on the AC, or risk bleeding to death. AC can also do permanent heart damage which is another concern of mine, however my heart is strong.

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I know I’m just one person but I have not had any bleeding issues while on ac. It’s all so scary! I’d love to chat more. My brother is a big researcher and he was very helpful in me deciding where to go for treatment and also what treatment to follow.

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Don’t know if this will help, But the gene mutation CHEK2 causes Male Breast cancer. It is rare but
if you have CHEK2 there are other cancers to be screened for. Thyroid, Colorectal, Kidney. I was told
CHEK2 was rare in 2015, but after 10 family members tested 8 were positive. I’m sure there are many more in my family but they don’t want to know. The reason they thought it was rare is because unless you have the full testing done it
isn’t found. I believe they are screening now for mutations other than BRCA. Prayers for all

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thank you for sharing this information. I did have genetic testing done but need to check with the technician to validate CHEK2. great information!

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@agingrobert

thank you for sharing this information. I did have genetic testing done but need to check with the technician to validate CHEK2. great information!

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Glad i could help God Bless

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