Topic: Male breast cancer

Forum: Male Breast Cancer — For men who have been diagnosed or are at high risk.

Posted on: Sep 6, 2019 12:53PM

Posted on: Sep 6, 2019 12:53PM

Johnnybgood wrote:

Hi I am a 64 year old living in Scotland I was first diagnosed with Breast cancer in Febuary 2010 and had a mastectomy followed by Radiation treatment. In 2015 I was diagnosed witth a small cell lung cancer on the same ,right,side Just 5 weeks ago after a routine mammogram they found a new primary Breast Cancer on my left side.The medics say that I am a rare man I would love to know about any others like me. On Monday i had a full mastectomy and now recovering regards to all here

jbeardsmore
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May 31, 2021 10:51AM Aussieguy wrote:

Hi, I’m new to this list. I was first diagnosed with BC in October 2012 and was on Tamoxifen. In January 2019 metastases were found in bone (spine, hip, ribs) and lungs. Switched to Letrozole plus Kisqali (Ribociclib). Have been on it since with few side effects, some tiredness and stiffness, but nothing serious. The most difficult thing was being put on Zoladex, too, to prevent testosterone production (i.e. chemical castration) as oestrogen in men is a byproduct of testosterone and they needed me to mimic a post menopausal woman. So that’s been tough. But I am well, had radiation on the spine in January 2019. One of the lung tumours showed progression last December and I’ve just had radiotherapy on it to prevent partial lung collapse. I’m being kept on hormone therapy for the time being as the progression is relatively slow at the moment. I mostly feel great and have somehow come to terms with things. It’s great finally to be able to talk to men about this! I’m in Melbourne, Australia and have a great oncologist and nurses.

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May 31, 2021 03:12PM mswife wrote:

glad to hear from you Aussieguy!

Are you able or willing to share with us the details of your initial diagnosis? Ie. stage, grade, treatment

A member to gather info for my husband ❤️ Dx 03/2021 IDC 2.6 cm, stage IIIA, nodes ‘undetermined’ (matted), grade 1, ER+/PR+, HER2 - Dx 3/16/2021, IDC, Left, 2cm, Stage IIIA, Grade 1, ER+/PR+, HER2- Surgery 3/25/2021 Lymph node removal; Lymph node removal (Left): Sentinel; Mastectomy; Mastectomy (Left) Chemotherapy 4/26/2021 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole breast: Breast, Lymph nodes, Chest wall
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May 31, 2021 04:39PM traveltext wrote:

Welcome Aussieguy. Sorry to hear about your metastasis I’ve been here for seven years and am very willing to offer suppport and advice. Can you post your original treatments?


NED breast and prostate cancer. Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.
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May 31, 2021 05:19PM livinlife wrote:

So glad you shared Aussieguy!

with expansive comedo necrosis & weak ER/PR Dx 7/2020, DCIS, Left, 2cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy; Mastectomy (Left); Prophylactic mastectomy; Prophylactic mastectomy (Right)
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May 31, 2021 07:35PM Aussieguy wrote:

Thanks for the responses. The initial diagnosis in October 2012 was a tumour in the left breast, Stage 1, ER+/HER2-, tumour assessed as aggressive, sentinel lymph nodes showed no spread. Mastectomy, tamoxifen, no radiation or chemo at that stage. Progression to Stage 4 in early January 2019. Further progression in January 2021. Apart from one of the lung tumours which has just been treated with radiotherapy, I have 'grumbling' tumours at various places in the spine, ribs, hip which cause me some discomfort but no big deal, I don't need pain relief for them. So it's wait and see now but I feel really well. To look at me you would have no idea I was ill.

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Jun 1, 2021 03:18PM traveltext wrote:

Aussieguy. Okay, that gives me a better picture of your past treatment. Amazed that chemo and radiation weren't originally given for your aggressive tumor. In any case, pleased to hear that your current treatment is progressing well. The use of Zoladex is interesting as I’ve only ever heard of this used for men with prostate cancer. Good that you are feeling, and looking, well. How lucky are we to be living in such a great medical era.


NED breast and prostate cancer. Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.
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Jun 8, 2021 07:54AM Aussieguy wrote:

The use of Zoladex in my case was controversial - my oncologists disagreed about its necessity. There is no data on it. Ribociclib only works with postmenopausal women; women who are premenopausal have to be made menopausal before taking it. By extension, my oncologist said that I needed to simulate a postmenopausal woman, i.e. I should produce no oestrogen. Hence Zoladex. There is a lot of discussion of this among oncologists, and so I've decided to follow the opinion of my current oncologist and another leading breast cancer expert I consulted. But I hate the effects! Very reduced libido, no semen, can orgasm at times but it's different from before. And my balls have shrunk. I'm not sure if men who take it for prostate cancer have these side effects. Apparently it's not used much any more for prostate cancer, according to my oncologist - seen as old fashioned.

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Jun 8, 2021 08:13PM traveltext wrote:

Aussieguy. Thanks for the explanation for the use of Zoladex. How old were you at diagnosis and how long were you on Tamoxifen? Was the decision not to go for chemo or radiation yours, or your oncologists? Have you seen regression in the mets at the latest scans?

Sorry for all the questions, just trying to work out how your oncologist reaches his decisions.




NED breast and prostate cancer. Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.
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Jun 8, 2021 10:37PM Aussieguy wrote:

Happy to answer any and all questions! I was 63 when the cancer was first diagnosed. I had a left breast mastectomy and because the sentinel lymph nodes were clear my oncologist said that radiation and chemo were unnecessary, and I immediately started with Tamoxifen. Just over 6 years later, when I was 69, in very early 2019, metastases were found in lungs and bone. I was then switched to Letrozole, with Kisqali, and Zoladex. Scans in December 2020 showed progression in a lung tumour - it had grown by more than 50%, and a further scan (this time a PET scan) in May showed that it had grown by a further 25%. I've just had radiotherapy on it. Some tumours in my spine, hip and ribs are active, but it's hard to tell if they are growing; they give me some minor discomfort but it's not bad, certainly nothing like the excruciating pain I had by the time the mets were diagnosed in early 2020. I've just read a study reported on this website showing that using Zoladex is supported in cases such as mine... grrrrr.

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Jun 9, 2021 03:36AM traveltext wrote:

Thanks. I edit stories for the Male Breast Cancer Coalition:

https://malebreastcancercoalition.org/survivor-stories/

You’re welcome to add your story, but that’s for you to decide.

The reason I’m taking an interest in your case, is because I’ve edited hundreds of men’s cancer treatments, and I get to see lots of different ones. First, nearly all men initially get a mastectomy and chemo. Second, Letrozole is an aromatise inhibitor and Zoladex is a hormone blocker, like Tamoxifen, all pretty light weight for fighting mets. The study for Zoladex reportedhere was on women, not men. Third Kisqali is an effective chemo drug, but it’s not working for you. Fourth, I’m surprised you aren’t on a second-line chemo, perhaps Ibrance.

You really need a second opinion IMO.





NED breast and prostate cancer. Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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