Welcome to the men's board

Welcome to the board dedicated to men living with breast cancer. We are launching this board in Men’s Health Week 2022 to provide a safe space for men living with breast cancer to connect with each other, learn from other people’s experiences, and share their own if they wish to.

Useful links:

Information about breast cancer in men

Treatment for breast cancer in men 

Doug and Dave share their experiences on our podcast

Doug’s experience

Graeme’s dad’s experience

Hi just saying hello. Male 59, i had posts on the general forum, so switching to mens forum. Had full mastectomy 1.5 years ago……waiting to hear from clinic if i should return immediately from Middle East to UK as i have to me an identical lump in my other breast as i had removed in mastectomy. Seems the Tamoxifen has done nothing to prevent. I know I have BRAC gene from work up on my tumour and blood work. Cheers 

Hi Andy

Not been on to the forum for a while but spotted this post!

I hope all worked out for you ok.

Are you aware of the Mens VMU? Its a group of men who are or have been on the Breast Cancer Journey.

We meet on the 4th Thursday each month via Zoom at 7pm UK time.

The group is made up of men of all ages & backgrounds.

I had breast cancer in 2015 when I was 58 and was declared ‘cancer free’ in June 2016.

Tamoxifen is a much discussed drug in the group as many of use have suffered significant side effects from it.

Best wishes

Dave

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Hi Andy
I think we spoke about this on the general forum.
As @Bluesunbeam said , it would be nice to see you at the VMU You can email me for details
doug.harper@themensvmu.org
Take care my friend

Good evening, I would like to re-introduce myself to the Mens forum. “Re-introduce”; because I was a very active member when the Mens awareness program started in earnest in 2005. At the time I was 41 years old and diagnosed with breast cancer, two tumours in the same breast a grade 1 and 2 with widespread DCIS. ER and PR receptive HER2 negative, no modified BRCA genes. I had a full mastectomy of the left breast and an elective right mastectomy for mainly vanity reasons, but also a lower presence of DCIS.
I received radiotherapy following the surgery and tamoxifen until I argued that the side effects were detrimental to my quality of life and the oncologist agreed to cease as it was a precautionary treatment. I was discharged as a cancer patient in 2013.
I am slightly disturbed, that tamoxifen is still prescribed to men who are treated the same as a post menopausal women. I had hoped treatment may have develooed, but maybe I am being inconsiderate here; the low proportion of men diagnosed would not realistically warrant an independant stream of treatment development.
I do howver, take some solace in the low volume of users here. I hope that this is not because blokes are being macho and not wanting to talk about Breast Cancer, because WE seriously do need too talk and understand everything possible about it, so that informed and rational decisions about your cancer journey is in your hands.

So after 19 years, why am I back - I have been diagnosed with stage 4 BC with secondaries in bone and liver. How do I feel about that? Shocked, inevitably but when I was told I had cancer again, I had already kinda guessed.
How did I find out? In Sep 23 I had, what I thought was a sciatica attack, lasted two or three weeks and managed the pain with a cream analgesic, paracetamol and ibruprofen. I was gutted, couldn’t play golf for a long time. Pain transferred to my back and on my assumption it was sciatica believed it was soft tissue/muscle damage I went to see an Osteopath, who decided to manipulate my tight feeling spine and broke my back. My T8 vertabrae colapsed and the resulting pain that came on a couple of weeks later was excruciating, hence a GP consultation for pain relief. To cut a long story short, x-ray, MRI and CT confirmed metastasis all the way up and down the spine, pelvis and two small lesions in my liver.
Lessons learnt: Dont assume, get it checked by a professional as soon as possible !
I certainly dont blame the osteopath, because without him I probably would not have discovered the truth of the matter until too late.

I’m now at the end of my first cycle of treatment, minimal side effects thus far and I am able to do most things. My back has healed sufficiently so I can play golf, I ride my motorbike as often as possible, plus I can park it for free at the hospital :rofl:. I hobble when I walk but the pain is managable.

If I knew in 2005 , when everyone around me thought that a cancer diagnosis was an imminent death sentence, that I would get 20 years of trouble free active life I would have been grateful.
Here at stage 4 and at the age of 60, I have to look at the positives:- It’s taken 19 years for the cancer to be a noticable issue; this is NOT an aggressive cancer. I have started my treatment and actually noticing improvements, restoring quality of life. I have no reason to suspect that I don’t have a good few more years in me and I intend to use those years to my benefit and enjoy them.

So my fellow club members, I wish you all the very best and if I can be of any help to any of you, I will do my best.

I will try to join the VMU this month.

Kind regards

Brian

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Hi Brian
Yeah Tamoxifen being used on us men, is (I assume) because there are so few of us that research on so few men is hard. I know a load of men from the VMU ( more of that later) some men have no problems at all. Personally, it messed up my quality of life and ended up with Chronic Fatigue syndrome .
41 is a young age for us blokes to be diagnosed with BC . Can I ask, were you aware that men could get BC?

i concur about getting checked .We are living in a postcode lottery luckily my GP was on the ball and sent me to the hospital ASAP. Others have not been so lucky. I know a few men that were told they had a cyst and told to go away . if that was me told that I would be dead now, because I would not have gone back (typical man!!)
I love your positivity (although I hate at expression for cancer sufferers )
I would love you to join our men’s group ( the mens VMU ) It is the only group in the country that is a group for men You would add so much .
Have a look at our website . A lot of our talk is about bloody Tamoxifen. https://www.themensvmu.org/ . As you know more than me , its been an uphill struggle for blokes to be recognised . BCN have been brilliant in the last few years and the fact that we now have this forum is brilliant !!
Please contact me via the website or here , I would love to chat to you. We also now have our own Whats App group

Doug

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Hi Doug,
Thanks for the response, I will have a look at the VMU site and engage.

I actually think stopping taking tamoxifen was one of my better decisions in life, believe me I have made plenty of dodgy ones too.

Look forward to chatting

Regards

Brian

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HI @fisher, welcome to the forum and the men’s board.
We’re here anytime you’d like to share anything.
Sending our warmest wishes
Bernard

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Hello Fisher

My name is David I got diagnosed in 2019 with grade 3 Invasive Ductal carcinoma, Right side Mastectomy, Axillary Clearance , Chemotherapy and Radiotherapy, followed by hormone treatments.

Letrazole changed after 4 months due to side effects, to Tamoxifen, 6 months changed to suicidal side effects, to Extamastene no physical side effects but stopped after 3 months because it had raused my blood pressure significantly and caused an Abdominal Aortic Aneurysm that I had to grow very quickly requiring surgery to put a graft in. (2021)

After surgery I was told to stop hormone treatment until I was given all clear re AAA surgery and after care.
That never came up again, and know all past effects I chose not to go back on it, having been told by my oncologist it was only adding 5% to my five year survival stats anyway.

In 2022 eventually due to Covid got the BRCA test done and had BRCA 2, chose to have left breast removed and right side repaired.

In 2023 I found out the cancer had spread to my lungs, started on Targeted drugs in initial Ricociclib, then replaced due to inflammation to Abemaciclib but once again back on oestrogen hormone blockers in the form of Anastrazole and Zolodex ( Goserelin)

Currently not on Abemaciclib due to pneumonia 6 weeks ago, but not caused by that drug this time, so hopefully back on that soon…

Sadly I’ve not been around on here recently family issues, but I’ll check in at least once a week from now on

Regards
D

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Hi David, I can see you have been and continue to go through the mill. I have read your story on the Mens VMU.
I can honestly say that while I am stage 4, I count myself to be very fortunate and still mange to do most of my usual activities. Im still working full time and maybe because its early in this stage of treatment I have suffered very little with side effects, in fact quite the contrary, I have noticed improvements in my mobility.
I am realistic enough to understand that I will head into a decline at some time, but it is really good to be able to learn from others experiences and similarly if I can help or support in any way I would only be too happy to.

Stay strong David and hopefully we will get to chat in the VMU.

Thanks for your reply

Kind regards Brian

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Hi I have not been active on this forum for some time, due to there not being much on, but it appears that the site is active again
Looking back at my past posts, it appears that I first posted in 2005 on the old Breast Cancer Care site.
I hope to be able to connect to the forum more in the future

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Hi Mitch, its seems you and I have a similar timeline. I too was very active on the BCC forums around that time.
There are a number of active members and we are happy to chat, discover and help each other from our experiences.
As always, you are not alone.

Stay well

Brian

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