Who knows what the future holds

[PHBF64]

Well I’m back, I have not been on for a while, quick recap I had breast cancer back in 2019……And all the usual treatment followed, mastectomy, node clearance, chemo, radiotherapy, and hormone treatment for about 18 months stopped because of an Aortic Aneurysm.

In 2022 I found out I had the BRCA2 gene and decided to have the other breast removed then they did a repair to original site.
Around November 2022 I was having physical therapy for the scar tissue to both surgery sites. The preventative surgery to left side developed a huge Heamatoma, and physical therapy was stopped in December. I kept ringing GP re chest pain along scars, to be told Ring the Breast team, in fact whatever I rang the GP with they said Phone the Breast team.

So in April by chance I was called to see the practice nurse for routine blood tests. I explained chest pain and new shortness of breath. She managed to get me a same day appointment with a prescribing nurse. He wasn’t interested at first in listening to my chest he saw all the scars and said it’s treatment related pain.
After a brief rebuttal to this he begrudgingly listened to my chest, and said I think your in heart failure.

Further blood tests were taken and he arranged for other tests.
A week later I had to see a Doctor at the surgery due to blood tests.

Again begrudgingly listened to chest and referred me for a chest x Ray……long story short, from that day, I then in the space of four weeks hat CT, Scan, PET scan, Ct guided lung biopsy……and in early June told the breast cancer had spread to both lungs.

I was originally offered lung surgery to remove tumours, then informed by Oncologist to try Targeted Treatment first for three months, if it works to stay on that treatment path.

So I’m currently just finishing round two of new drugs.

I caught the new Covid 2 weeks ago, and although I’ve been clear since last week I’ve felt awful these last few days.
Don’t know if it’s side effects or post Covid……but I’ll talk to Oncologist on Friday and run it by him.

So more so now, than before this designated Male Breast Cancer page was developed and rolled out, it’s important that men remain vigilant at all times with their health, and politely don’t be fobbed off by doctors , you are the expert in YOUR health and well being, nobody knows more about your body than YOU.

Be demanding if you’re not being treated fairly if need be get a second opinion.

Regards
D

[Dhillman]

Hello @PHBF64,

Firstly sorry that you are here again and going through challenging times yet again. It’s been quite a journey for you already.

You are right that we are the only ones who know our bodies and therefore should not hesitate to advocate for ourselves.

Well done for not taking no for an answer and not being ‘fobbed’ off.

Just wanted to say ‘I hear you’ and also wish you all the best outcomes for your treatment and the future.

[PHBF64]

Thank you Dhillman

Being heard is this most important thing.

You take care as well

Regards
D

[Beeza66]

Just read your message. Didn’t realise until the end you are male. You are so strong to go through all this I am in awe of you. You have been through so much and I’m here for you if you need to talk. I’ve had left breast mastectomy and lymph node clearance and am half way through chemotherapy. I hear you. I had cording, seromas in my breast and four seromas drained from my armpit.
I was a week in hospital with a rash all over my implanted breast and surgery planned to remove my implant. It never happened. But still a harrowing experience. You’ve been through much more and now your lungs! You poor thing.

[PHBF64]

Hello Breeza 66

Thank you for hearing me, believe me it matters.

Am I right in saying you’ve just started treatments.?
I had EC chemo followed by Paclitaxel, the latter of the two was pretty cruel to me, it caused peripheral neuropathy in my hands and feet. Two years after it I had both big toe nails removed.
In the begining I had bad pins and needles in feet, so had it reduced.

Then Covid arrived and the last three cycles were cancelled,
( I’m now worried that did not help my current situation)

I too had seroma’s galore on first mastectomy, plus Cellulitis across the mastectomy scar line….awful time.
When I had the second mastectomy I had a seroma drained twice, all going ok then a huge Heamatoma occurred in the wound area….still here now 9 months later….

I often think as a bloke, doctors think they can get away with saying. Stuff like, “ don’t worry about scars, or how your body looks your alive”
That may be so but body image affects men just as much something I highlighted in a research study back in 2019.

It’s nice you’ve dropped by and spoken, and even though I am male, I too have had Breast Cancer and walked a very similar path to your good self, hopefully in the years to come, when society is more aware men do also get this disease we will be more included in main stream groups , I like a male zone , but equally I like talking to fellow lived experienced people, which will on the whole be more likely ladies because it affects 58k and year compared to 380 Men a year.

Some ladies will talk others not so much and that’s fine…I fully understand.
But I’m wired up now to prompt men be more included in Breast Cancer discussions everywhere. I often put post out on Wear it Pink day to remind everyone “Don’t forget Blue, because men get it too”.
It’s done in no way to offend or upset people , but provoke thought, Educate those that don’t know, and prompt conversations.

On this day

I wish

I pray

That you

include a tiny

bit of Blue

Because like

All my

cyber sisters

On this page

Us men

can

get it too

Once again thanks for hearing me, and dropping by to say hi. Don’t be a stranger in this here man shed LOL

Kindest regards
David

[Beeza66]

Hello !

I’m half way through chemotherapy - will start on Docetaxel tomorrow that will be my 5/8 - I’m very nervous.
Today I had my PICC line inserted as my veins have corded in my lower right arm where they used the cannula for my first 4 EC cycles.
How are your lungs? What treatment are you having? Poor you. You are the first male I have known with breast cancer and I think you are doing so well spreading the word. If you live in London I can help you spread the word in schools and communities.

Keep strong - remember “What doesn’t kill you makes you stronger!”

[PHBF64]

Hello Beeeza

How did you get on with your recent round of Chemo, was it better with your pic line being fitted. I myself had a Hickman line fitted into my chest , same as you my veins were pants and kept collapsing.

How are my lungs? Well it’s a bit confusing to be honest, I’m told you have no pain receptors in the lungs, but I’m very aware of chest pain. This may still be the muscular pain related to other treatments but I’ve noted a further increase in that pain in recent months. Now that could also be new side effects compounding pain, it’s all hard to tell.

So my new drugs are Anastrozole, Zolodex Injection, and Ribociclib .
I start my third month of them on Thursday, followed by a full body PET scan on the 25th of September, then an Oncology meeting on the 6th of October to discuss if it’s all been working

I don’t live in London I’m afraid but another of the guys on this Page Plumrade is in the London area, and is as proactive as myself raising awareness about male breast cancer in Men.

Kind regards
D

[Dhillman]

Hello David,

It’s good to get an update on how you are doing.

I am new to all this. Invasive stage 2 BC primary diagnosed in May. Totally shocked and blind sided etc as no one can say where it came from. Kept myself well, no pre-existing cond. or family history.

It’s still all so surreal - just taking each day as it comes, going with the flow. What’s the alternative?

Thankfully they caught it early - having neoadjuvant treatment. So far had 3 EC (thankfully mostly ok side effects aside from losing my hair). Now waiting for 3rd Docitaxel and Phesgo. This is tomorrow.

Side effects not so great on this lot. Spied the smile off my face a few times and challenged my mental strength. So onco has reduced dose a little.

I try not to complain and protest too much with them putting these toxic drugs in me as they are fighting the cancer. Here is someone in their early 50s who hesitated even taking paracetamol ! Hoping they don’t leave me with long lasting negative side effects.

I am looking forward to end of these drugs (one more in Oct. after tomorrow to make sure they got it all), then scan, lumpectomy and short cause of radiotherapy.

I can’t say I am not worried about secondary or recurrence in the future but I am hoping for the best. If no one can tell me how it got there in the first place, how can I prevent it?

Don’t feel alone. I wish more men would speak up. It’s not just prostate or bowel etc for them to think about. My hubby is being educated about checking etc and going for MOT’s and also being attuned with our bodies.

Stick around, let us know how you are getting on and best wishes x

[PHBF64]

Hello Dhillman

I wish you well with the remaining elements of your treatment.
I had EC&P Paclitaxel, was a bit tough on the old feet. But in truth I think I did ok on Chemo, it was Radiotherapy that got me months after.
I my treatment during Covid lockdown , the last three Paclitaxel were stopped, and radiotherapy condensed into five days x 3 the strength…….I’ve struggled since with chest, shoulder and arm pains…

I’m glad your husband is taking notice of his health, all of us men should. You are spot on it’s not just the obvious Prostate Cancer but all cancers .

In fact we men should be mindful of all health issues and take more notice if changes, and report them early. That is Key catching things early, most diagnosis’s in men our high because issues were reported late on….

The sad part is ladies will talk to other ladies about their health and well being issues. That’s why cancer sites and health related sites are predominantly made up of female audiences. Men are less so likely to attend groups, join forums, because we seem to be conditioned to keep quiet, say nothing. Rarely do men in social settings discuss health/ wellbeing, issues, it’s a topic that is likely to leave the talker on their own ……

We need to change this psyche we men have we as parents must also tell our sons as well as our daughters it’s OK to talk, about any health or wellbeing issue, that’s the only way we will squash these older ways of men dealing with stuff.
Secondly the groups for men that do get audiences tend to emphasise the machoness of being open about health issues .

Not only Rugby Players have breakdowns, not only Film stars get cancers, …sadly the age of the influencer on line should campaign for men instead it drives men further into silence. If you don’t have a six-pack, muscles beard, and white teeth, then you’re not worth their effort .
I know of famous people who could actually raise awareness of serious health issues but don’t, they sell a book, get a new film, or tv programme, gig or whatever and move on.

Anyway moan over

Regards
D

[The_Plumarade]

Hi @Beeza66
This is actually the men’s forum which in itself is a massive progression for us men . BCN have been working really hard with us to help improve awareness for men with breast cancer . Things have improved a lot in the last couple of years thanks to people like David
XX