Male breast cancer
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
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Hi Johnny, and welcome to Breastcancer.org!
We're so very sorry to hear of all of your struggles with breast and lung cancer -- you've definitely been through it! We're so glad you've joined us, though we hate the reasons that bring you here. You're sure to find our Community an incredible source of information, advice, and support -- we're all here for you!
Others will surely be by to welcome you soon, as we have a small but very helpful group of men among us. Lots of very supportive women as well!
We are sending good thoughts for a speedy recovery! Please let us know if you need any help at all while you navigate our Community.
--The Mods
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Hi Johnny!
I hope Traveltext or one of our other male breast cancer survivors stops by, but I'd like to welcome you to BCO! Hope your recovery goes well!
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So sorry you have to be here, Johnny, but glad you found us. There are so few resources for men with breast cancer. I hope you are able to get the support and care you need.
I'll echo what Elaine Therese said about Traveltext. He's a great guy, Australian I believe, who advocates for better care for men with breast cancer. He'd be a good person for you to connect with. I don't think he'd mind if you sent him a private message.
Best wishes for successful treatment.
Trish
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Johnnybgood, welcome to BCO, everyone is so helpful here. The lung cancer was a double whammy, so I guess the second primary bc is a triple whammy! Sorry to hear about your latest diagnosis, but pleased that treatment has begun. Apart from the second mastectomy, would be having chemo or radiation this time? Also, were you prescribed Tamoxifen after the first diagnosis? Finally, do you know the type and grade of the two breast cancers?
Lots of questions, but establishing these facts helps us give you advice and support that is based on what we’ve all been through. Keep us posted.
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Hi travelltext thanks for you response.My first BC was in 2010 it was a stage two as it has reached the lymph nodes underarm.There was no chemo but 20 rads.This involved a round trip of 60 miles each day.it is likely that it is cured. The current bc was discovered after a routine mamogram about 5 weeks ago its very small just 4mm i. don't yet no what final treatment will be as they took lymph node biopsies and will get those results in 10 days. I took tamoxifen for 9 years.I have been a " someone like you" volunteer with Breastcancercare,co.uk I was well trained for it.The Lung cvancer is a small cell Lc for which I received Chemoradiation which made me very ill and I lost four and a half stone.I have been in remission for four years now and still cheerful which is my natural state.
Hope that helps
John
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John, I’m assuming you were ER/HR positive the first time around, hence the tamoxifen. Certainly, you’re lucky to have a second primary rather than a metastatic recurrence, and I’m interested, no doubt like you are, to find out the stage, grade and tumour type of the new primary. This will determine what extra treatment you might have.
Meanwhile, you might like to check out the Male Breast Cancer Coalition website here:
https://malebreastcancercoalition.org/survivor-stories/
Good on you for volunteering with BCC. Have you met some men with this disease yet?
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Just wanted to add myself on here - my husband was diagnosed about 8 weeks ago and has had a mastectomy and started chemo. Happy to answer any questions people might have! I have read a lot of travel text' posts and he is a great resource!
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Thanks MSwife. I'm here for you and hubby, so feel free to DM me with any questions. How's the chemo coming along?
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He’s had a rough couple of days, he’s just 6 days out from his first treatment (and I hear he might feel worse with future chemo dates??)
He felt great the first few days. He is really not used to feeling unwell, but I’m hoping things improve later this week. Lots of joint and bone pain (he’s on filgrastim injections and Claritin seems to be helping).
I’ll for sure let you know if we have any other questions!
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Want to welcome you Johnny and MSWife! Glad Traveltext chimed in already - so helpful, as well as others' support and feedback.
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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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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
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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?
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So glad you shared Aussieguy!
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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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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.
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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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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.
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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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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.
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Just wanted to check in for some advice.
My husband just started Tamoxifen this past week - 20 mg daily. This morning he woke up a bit 'blah' - nausea, mild headache and chills, body aches. It's possible he could have picked something up, but he's triple vaccinated for Covid and we have very low case numbers locally. Could also be just a regular cold or even food poisoning, I guess lol.
Anyways, most side effect profiles are from women, so I'm wondering if men who have taken it have any insight on how normal these symptoms are and what we can expect as he continues therapy. Hopefully if it's Tamoxifen related, they go awa quickly because I'm not sure he would tolerate being laid up like this every day!
Thanks!
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I'm a guy who has been on 20mg daily tamoxifen for the past seven years. Never had anything like this, but I started at age 64 and so not subject to the hot flushes that younger men report. How old is hubby?
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Good to know how things went for you. He’s 53.
Will keep an eye and report back
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This is a very effective drug for ER+/PR+, HER2- men. I take mine at 8am so that side effects show up in the day. By nighttime these should be minimal, and certainly next day virtually nothing that the drug could cause. Keep us posted.
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just wanted to update you all:
What ended up coming out and probably causing his fever was a cellulitis (mild) to his chest wall, where he had radiation. He is on antibiotics now and it’s settling.
As for tamoxifen, he seems to be tolerating it well. He says he feels a bit hot and sweaty at times, but it’s not like a true hot flash where he’s dripping sweat or anything. He’s been taking his med at night but might switch to the morning at some point to see how it goes.
I’m hopeful all side effects will be gone in a few weeks
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Thanks for updating MSWife. It's great to have he follow up.
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Just checking in to keep this thread alive and see how everyone is doing.
Hubby is now 2 years out from diagnosis and doing well! Labs all look good and he’s returned to work. Tolerating tamoxifen 20mg daily with no side effects so far.
hope everyone else is hanging in there1 -
thanks for the update mswife. Good to hear hubby is tolerating tamox. I’ve been on the 20mg dose up until recently for nine years. Just cut it back to 10 mg because of elevated liver enzymes. Otherwise I’m still NED.
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Hi,
I was taking Tamoxifen fir 14 years before I was asked to stop as it was believed that I had minimal risk of recurrence, I had almost no side effects of Tamoxifen
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I'm just jumping in here to say that I am real glad to see this thread active again. I was wondering where all the guys went.
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