New to Group and Male

[PHBF64]

Hello everyone

My name is David and I’m new to this group, though I write occasionally on the Men with Breast Cancer page.

I was diagnosed with breast cancer back in 2019, went through usual treatments mastectomy, Axillary Clearance, chemotherapy, radiotherapy spent around a year on various hormone therapy, Tamoxifen Letrazole, and finally Extamastene, came off the first two due to crippling side effects the latter one was stopped when it started to cause high blood pressure. That in turn caused an Abdominal Aortic Aneurysm that I already had to grown very quickly, resulting in an open surgical repair to fit a graft. 2021.

In 2022 I had left breast removed due to being BRCA2 at the same time as a repair surgery to my original mastectomy.

Then in June of this year I was told the breast cancer had gone to my lungs. Originally surgery was planned, then Oncologists said try Targeted treatment for three months first. Which I did ….and last Friday I was told the largest tumour on right lung had shrunk and there was evidence the tablets were working , on the left lung all stable. No sign of spread else where.

The oncologist said id be discussed at an MDT meeting, and surgery may still be an option…

Here is where I am a bit puzzled? if pills are working why would I need surgery that comes with all the risks they mentioned at the begining….

Anyway we will wait and see…

To be honest I feel as if I’ve been sleep walking for the last 6 months….history appears to be repeating itself all over again.

In 2019, a month after my diagnosis, my sister in law was diagnosed with Small Cell lung cancer, my cousin in Ireland , diagnosed with Breast Cancer around the same time.

My dear Sister in law passed away in Dec 2020…….

My father in law was told last October he had Mesothelioma a lung cancer connected to asbestos. He sadly passed away last week.

About 6 weeks after my stage 4 diagnosis in June my Cousin told hers had spread to her chest wall. She now awaits her new treatment regime.

She would never of known, it’s only because I told her about my BRCA2 Gene being on my dads side of family, she too tested and was positive. Because of the positive result she had an MRI instead of annual mammogram, and the cancer was identified at that scan.

I really feel bewildered by it all, and times exhausted. Sadly there has never been a time where I’m the person with cancer it’s always been others that come first …I might sound mean saying that. I am not a mean person, but because other people were more I’ll they took precedence, and I pushed that, but by doing so many forget I’ve got cancer myself, and act that way towards me……

I don’t mean to moan but I just need to vent this out rather than bottle it all up.

The funeral for my Father in Law is next week, and I’m dreading it, there are many family quarrels sadly mixed up in all this and I pray people can be civil fir just a few hours ….

And once again on the day I will be both peace keeper, the someone to lean on , the supportive one, the civil organised one….
And yet inside I feel this will be myself in years to come

Sorry it’s been long winded.

I may be a man but believe me I seriously know the pain and anguish Breast a cancer has caused , we may be few, but we men do get it too…

Regards
D

Ps…ife there any spelling errors please forgive me, my mind is shot to bits and have no energy to spell check tiday. Sorry

[sprout]

Hello David I do feel for you especially as you are a man and it’s not a common then woman having it.

Iv a family history with cancer I was diagnosed at 46 in 2014 stage 2 had cancer in my right breast but what could be another inside that could turn. They said remove breast so I opted for both off and have I had issues since.

I waited 2yrs for breast reconstruction in 2016 then in 2018 I had it return by my armpit so it was removed and lymph nodes removed I then got lymphedema in my arm and last week Iv got cancer in the same area again. I had radiotherapy in 2019 so they are baffled why I got it back. It’s a grade 3 where my scar tissue from reconstruction and armpit, it’s either a few cells got caught or it’s traveled via the blood. It was small and a lot was removed via biopsy, I get my MRI Saturday and CT Tuesday then oncologists 24th. I am so worried about it this time because of everything Iv had done previously should have eliminated it returning my fear is it’s spread.

I complained 2yrs ago it didn’t feel right, I got a rash that the doctors think was unrelated. I then saw a consultant who said do you want a scan then, those words but not as nice. More like we will give you a scan to shut you up, I could have easily have said no and gone home but I stood my ground.

I got to 4.5yrs clear then wham I get it back, it’s now another 5yrs and back again.
Iv just sent my genetic testing away but as you know 12 weeks will seem like forever
Two cousins passed at 40 both were 38 when they got it. I just wish you got yearly scans even I I paid for it. I’m convinced both my consultants think I was just paranoid so glad I am.

People unless have or are going through it do not understand, I keep getting told be positive all I can do is try to stay focused.

I hope you are starting to get somewhere with your illness, all the best
Alison

[PHBF64]

Hello Allison

Firstly many thanks for your reply, I’m saddened to hear you are yet again battling this awful disease. At times it must feel relentless.

I understand the angst you feel towards uncaring consultants….
In November 2021, I too developed a rash, it started under one armpit then the other. I was told over the phone for over 6 months without any visual diagnosis, that is “Sounded like Ringworm”…so I treated it with over the counter creams . Eventually 7 months after I saw a dermatologist he treated me for the same. It didn’t stop this round ring getting larger and larger. I put it to him could it be Granuloma Anular, and hinted there was evidence it could be linked to breast cancer. He agreed to a biopsy. I waited a further 6 months for a letter to say it was that. I’ve been waiting since then to get the follow up with the skin dr…

And guess what Cancer returned…? Yet nobody will say either way if the rash was connected….it’s in the last 4 months gone.

I often feel they don’t see as humans they see us like pet projects they can tinker with when it suits them, my dr was asked by the current oncologist to prescribed me co codamol, it took the surgery
11 weeks and three stiff reminders from breast nurse.

Alison I hope your tests go well, I hope it’s good news, all we can do is Stand our ground when need be, we are experts in our own health, and if something feels wrong, it often is….never give up advocating for yourself and your welfare …

Take care of you
Regards
D

[sprout]

Thank you. Yes we know our bodies and my aunt had breast cancer in 1990’s she is ok but her daughter my cousin gets mammograms every 3 years. Iv told her this isn’t acceptable and she needs to fight for yearly ones, she has a daughter 20 my heart would break if they went through this.

Anyone reading these should make sure they don’t take no for an answer.

I almost didn’t go back it was just the rash that made me go. I was told it was an allergic reaction to something it went to both breasts and around the side where my cancer was. My consultant said it was too fast to be anything. They are nice to you when the news isn’t great but not happy to see you if you’re not sure. I wrote a letter to one consultant and made him read it before we spoke. The letter was explhow he rolled his eyes at me the last time as if’ not you again’. I wrote Iv got so many scars that I can’t tell what’s scar what’s a lump, we need to trust them to identify the difference. To be honest they feel you so fast I never feel like they have every done it properly. After reading this letter he couldn’t apologise enough then last two weeks ago I saw him again, his attitude was still the same “so do you want a scan then” like I give you a scan to shut you up.

I sometimes feel unless you have been through this you shouldn’t be qualified to judge people. If we don’t know our own bodies who does.

Don’t give up, keep insisting they will give in, in the end.

I’m pleased you told your story breast cancer is nothing to be ashamed about regardless of your sex

I hope your never go through this again, stand up and tell your story it has to start someone good luck

Alison

[Concerned75]

Hi David.
Good to hear from you. I come at this from an emotional side.
I agree, it is difficult to try and focus on what’s happening to you, when others around you are caught up in the same.
My experience was being sandwiched in the middle; my sister on my left, was dying of metatarsal breast cancer during the covid, so I couldn’t see her before she died, meanwhile on my right, my father-in-law was dying from blood and bone cancer.
I in the middle shortly had my own breast cancer, after they both died. Like you, it was a lot to deal with.
I wish there was better mental support from the team(s) within the Hospital oncology.
It sounds like you might benefit from some counselling support, if you don’t already have it.

Mental health with long term conditions is just as important as physical health.

Take care

[PHBF64]

Thank you for your reply. Yes I accept and fully understand the mental health aspect of this is diagnosis. I did have counselling back in November 2021, as I felt that the end of initial cancer treatments, the Abdominal Aortic Aneurysm surgery had suddenly hit me, I was not coping that well, and though I had had treatment, I was in so much physical pain, I couldn’t comprehend a lot of it.

I regularly attend my local Maggies and attended a mens group I help set up. …
I use talking about my illness as my way to soothe my psyche.
Yes your right thought, and I’m currently aware now that my faith in law has passed how much I’ve currently kept to myself. Although my wife and I talk, I don’t tell her everything because I’m aware how much all this cancer overload all around our family has and is causing…

It’s good to come here and vent, that helps too……
In the real world many don’t understand , and I’ve now become less able to explain.

Kind regards
David

[Jacksy]

Hi David,
I just wanted to jump on and say thanks for sharing/venting here, that’s what the forums are for, and it must be so much more complicated and difficult being a man with BC. There’s so much ignorance around.
I just particularly wanted. to say I hope the day of the funeral goes/went well. I find funerals incredibly difficult since my secondary diagnosis, and for you, being sandwiched between other people with cancer, and the family tensions you mentioned, and you normally being the peace-keeper, well, it sounds like you won’t have a moment to deal with your own feelings on the day. Maybe you could take yourself off the day before or day after to a forest/church/wherever your peaceful thinking space is, and do a little grieving for your own journey? Or speak to someone at the Maggie’s centre about it. Its really important you have a chance to face your own feelings the funeral brings up, and not have to put them aside for the sake of others. Also, on the day (sorry, Im not sure if its happened already) just stick with people you feel comfortable around and avoid the stirrers and self-centered drama people. you’ve been through so much, you deserve to take care of your own needs.
All the very best with your treatment
Jacksy

[PHBF64]

Thank you Jacksy

Sadly the funeral was a disaster, the sister in question showed up at the crematorium.

I might if mentioned I read a sort of eulogy for my Father in Law, and the Official Celebrant read out the family eulogy, based on my wife’s family memories.

So I felt wound up like a spring on the morning, wanting it to pass off without incident, and deliver my words knowing there was potential for unrest.

That part passed ok, outside this sister made a big drama of hugging mum whilst wailing……but then made a be line to my sons , who were very upset post funeral. I intervened asking her to leave them alone, I used a bargaining chip with her suggesting I’d visit her home in the near future and explain, why things are so strained. With that her son agreed to usher away to reduce the risk of major fireworks with her siblings.

At the wake I tried to help out making sure other guests were ok, and I admit I left my wife and sons with her family to chat talk etc….
I had a little disagreement with a barmaid, re her inviting in a dog walker( her friend) and feeding her with the funeral buffet. I complained to pub landlord but asked to make it low key and after we left. But no it was said there and then. Said barmaid then refused to serve me and caused a fuss.

Upon leaving I shared a cab back to the home of her father, I remarked on this barmaids rude behaviour. My Brother in law barked at me saying she was his friend and he had allowed her to use the buffet.

Well thanks for telling me……

And 6 months of frustration anger sadness grief, bubbled up.
When we got in the house, I to.d my wife, it didnt register with her how the day the occasion, the build up, the drama, had got me to breaking point.

So I went to the loo, then left the house .

I went back to my home three hours later.
I didn’t want to argue with her brother about not being courteous to inform me food arrangements, or the fact he chose a barmaid over a so called family member of 34 years……

I didn’t want to show all this emotion to my wife or her family, and in truth I could explain how ill of it all I was feeling.

It went down ( rightly so) badly with my wife, she said I let her down and our sons. Only when I said how do I comfort you all, when I know youlll be doing this all again in years to come…
I kept a wide birth to limit my emotions from overflowing

We have since spoken and I agreed my behaviour was wrong, but she accepts why it happened.

I won’t let family dramas affect my psyche again……I’m done with it.

Regards
D

[JoanneN]

Just read this - what a nightmare for you and so sorry you had to deal with it all . Maybe you are the one who is always helping to keep everyone else together but try to give yourself some time to grieve as well .
And whatever else happened you did a good job with the eulogy by the sounds of it ( not easy ) which must have taken some pressure off your wife and brother in law . I’m sure that in retrospect they will be grateful for that and more importantly you did your father in law proud .

Take care
Joanne

[PHBF64]

Thank you Joanne

I hope so

Regards
D

[Jacksy]

Oh David, what an awful experience for you! It sounds horrible and isolating and emotionally heavy. I’m glad you took yourself off - it was the right thing to do for you, to protect yourself from any further aggro.
I can’t believe about the barmaid and the dog walker ! Even if she had permission from your b-I-L it’s still not something she should do. And then to refuse to serve you! … I’m speechless.
Anyway, I really hope your wife and sons have a bit more of an understanding about how it all made you feel, and maybe you can talk a bit more about that with them, if you want to.
As has been said, the important thing is that you did your father-in-law proud, so you can feel proud of that. And yes, give the more demanding family members a wide berth from now on
All the best
Jacksy