Hi Steve,

A very warm welcome to the forum that nobody really wants to join. I am so sorry to hear about your diagnosis. Unfortunately, men are prone to breast cancer too, although less frequently than women. I am afraid that I don't know of any specific forums for men with breast cancer, although I'm sure that there must be some. 

I am so sorry to hear that you lost your mum to cancer - I did too. I am glad to hear that your prognosis is good and that you have a supportive family. I have had 2 bouts in the past 11 years and am currently undergoing tests for a third. It is a scary business, but it gets easier once you begin treatment and start to fight it. I sincerely hope that the chemo reduces your tumour before surgery. How are you coping with the chemo?

There have been some men on this forum throughout the years. If you go to the search bar at the top of this page and insert your title or something similar, you should find some of them. In the meantime, please remember that we are always here for you - on the bad days as well as the good. It always helps to vent!

Please keep in touch.

Kind regards,

Jolamine 

Hi Jolamime

Thank you your reply and understanding my need to vent. I'm glad you confirmed what I've researched, is guys are in the minority with this particular cancer and as such info / forums to access other guys going through this doesn't seem to exist for breast cancer. It's taken me 4 sessions )12 weeks) to pluck up the courage to post. 

Re the chemo and results so far I have been told I'm doing well so far. The scan has shown significant reduction of the tumour so far. 
 

I have session 5 of 6 next Thursday. The side effects were more extreme after the first. Such as my mouth, ulcers, rash, spots and my stomach has not been right throughout regardless of what I attempt to eat. The dexomethasene (forgive spelling) I have pre chemo and for a theee days after cause sleepless night and initially a sugar craving and actually a decent appetite. I started to see why you could put on weight through this process. Since session 3 and even more so these last ten days after session 4 I lost all taste, appetite and cravings. Spicy food which I loved is now a complete no no. Only since Monday have I been able to taste and enjoy some simple foods. The back of my tongue made everything taste awful. So I don't look forward to that after the next two sessions. 

I have a meeting with my oncologist on Monday to discuss the operation schedule. 

Thanks again for your reply.

Take care

Stebe 
 

Hi Steve,

I have just done a simple search for breast cancer forums for men and think that you may find some of the addresses below helpful. I cannot vouch for any of these, but they make a start for you. There are plenty of other ones if you want to do a search yourself.

https://www.hisbreastcancer.org/discuss-male-breast-cancer-topics

https://healthtalk.org/breast-cancer-men/information-and-messages-for-men-with-breast-cancer

https://www.menshealthforum.org.uk/stranger-talking-dog

https://www.dmu.ac.uk/about-dmu/news/2020/october/new-forum-will-bring-men-with-breast-cancer-together.aspx

https://www.facebook.com/mensbreastcancerforum/

https://malebreastcancer.ca/

I am delighted to hear that you are coping with the chemo and that the tumour has shrunk. I haven’t had chemo myself, but understand that the side-effects can build up with each session. It is great that you are coming to the end of it and, I hope that things will soon begin to taste better again. Are you drinking plenty of liquids? Here’s hoping that all goes well with your oncologist on Monday and you can move on to surgery soon. I have had both a lumpectomy and a double mastectomy in the past 11 years and can assure you that both were a lot easier to get through than I expected.

Please keep in touch and let us know what transpires on Monday.

Kind regards,

Jolamine

Hi Steve

Jolamine has given you some great support already and some very helpful links. We would recommend that the most reliable information can be found at breastcancernow.org/.../breast-cancer-in-men 

I hope you find it useful but don't hesistate to post here or give our nurses a shout if you need to ask anything

Best wishes

Sarah

Thanks for all for these and taking the time to respond. 

I too have googled and seen these similar links and read some of these from the start when I was diagnosed. My point still kind of stands. Anyhow I've read a lot and sadly had some prior knowledge from my mums experiences although mine is different and I have chosen to do chemo. A decision maybe my mum should have made too but hey that  was her call.

My GP to be fair has been awesome and she calls me every 2/3 weeks to ask how I am, asks if need anything and to generally chat with me, what a legend she is. Above and beyond bearing mind how busy they all are. 
 

Anyways, I hope everyone is doing the best they can. I'm back in for cycle 5 Thursday. Only one to do after, the end of  this chemo treatment is in sight! 
 

Thanks again everyone.
 

Steve 

Hi Steve,

I am delighted to see that Sarah has added a more reputable site and hope that this is one that you haven't tried yet. I am sorry to hear you say that your point still stands. I agree that none seem as robust as this one is, but have found throughout the past 11 years, that the best way to make a site become active is to keep contributing to it.

It is great that you have such good support from your GP. We hear about the bad experiences, but seldom hear about the good. Mine too has been legend, especially throughout this pandemic. She has phoned me regularly just to check in with me and has even seen me a couple of times when needed.

I am sure that you are relieved to see the end of your chemo sessions in sight and, hope that all goes well from here on in.

Kind regards,

Jlamine xx

Hi Steve 

I have only just read your post and am sorry to hear that you have cancer.  My husband was also diagnosed with breast cancer last December and I wanted to let you know you are not alone.  It was a horrible shock but several months later he is calmly going through the treatment.  He had surgery during January involving isolating for COVID before and after.  He came out the same day.  He is currently nearing the end of 12 cycles of Taxol chemotherapy, and is also having Herceptin injections every 3 weeks.  Radiotherapy will be next and we are waiting to hear the details for that.  He will then have Tamoxifen for 10 years, I think.

Side effects aren't pleasant but aren't too severe.  He is 65 and retired so it does mean he can rest a lot.  His sister was also treated for breast cancer about 10 years again and is fully recovered. So it does seem to run in families.

I wish you all the best with your treatment and hope you're not suffering too much.  It would certainly be good to hear from more men or their partners/families.

Louise

Louise

Thank you for your reply.

How is your husband now? I am now two weeks post mastectomy, I don't feel so bad, just a little sore and I've a reasonable seroma which I hope will go away. It appears to have shrunk these last couple of days. 

I was told i am now cancer free last week which was a huge relief to me and my wife given my family history and my age, 40.

Yes, likewise, I still require an injection treatment every three weeks until December but this seems easy compared to the last few months. 

Thanks again for replying, means a lot. 

Love

Steve 

Hi Steve 

Nice to hear from you and know that you're through the surgery and all is looking well.

John had terrible bruising after the op, right down to the waist, but the doctors and nurses all said it was fine (although they winced).  Sure enough it disappeared over the weeks.  He too had a seroma which was tender and swollen. At his post-op consultation, the surgeon drew off a syringe and a half of fluid, it wasn't painful and it reduced the tenderness.  A little swelling came back but the body gradually absorbed it and it went away.  The scar has healed nicely now and he is just left with a slight indentation on his chest.

He just has a couple more Taxol sessions to go out of the 12 weekly cycles.  His side effects have been thinning/loss of hair (but not eyelashes or eyebrows), fatigue, headaches, skin rashes and dryness, diarrhoea on and off, and blocked/bleeding nose with bloody snot (sorry, but graphic). But nothing at the extreme end and manageable with paracetamol, Imodium and skin creams.

Next will be radiotherapy because his tumour was 3.1cm with little margin and right against the skin and chest wall. They just want to make sure they get any residual cancer cells.  The good news is that it hadn't spread to the lymph nodes.

He's coped with it very well and has focused on it one step, appointment at a time.  At first I spent time googling everything but I've concluded it doesn't help and makes you feel more anxious.

He has been referred for genetic screening so perhaps that will shed some light on his family history.  Although we know his sister doesn't have the BRAC1 & 2 genes, and she didn't have a HER-2 positive tumour. We've said if you get cancer, breast cancer is one of the most treatable and even curable (in some cases).  The sheer numbers of people being treated has led to better and more effective treatments with better outcomes.

I've written a fair bit of detail here in case other men find your post.  Although it is rare in men, it is the same disease and they treat it in the same way as women with the similar steps, side effects and outcomes, so there is plenty to be positive about.

Hope you continue to recover well.

Louise