Topic: Male breast cancer

Sep 6, 2019 10:10AM Moderators wrote:

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

Sep 6, 2019 11:57AM Trishyla wrote:

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

Sep 7, 2019 03:20AM - edited Sep 7, 2019 03:34AM by Johnnybgood

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

May 11, 2021 07:54AM MSWife wrote:

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!

May 12, 2021 07:29AM MSWife wrote:

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!

Mandy

May 31, 2021 07:51AM 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.

May 31, 2021 01:39PM 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?

May 31, 2021 04:35PM 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.

Jun 8, 2021 04:54AM 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.

Jun 8, 2021 07:37PM 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.

Dec 4, 2021 01:03PM - edited Dec 4, 2021 01:08PM by MSWife

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!

Dec 4, 2021 02:21PM MSWife wrote:

Good to know how things went for you. He’s 53.

Will keep an eye and report back

Dec 13, 2021 10:37AM MSWife wrote:

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