Introduce yourself

[Deleted User]

You have all joined this online group with a common purpose and that's to connect with other men who have been diagnosed with breast cancer.

You might want to share your story or you might simply be seeking information and support....or you might be here doing both. Either way - Welcome!

If you wish to share your story then please take a moment to comment on this blog post and introduce yourself to the other members.

To comment on this blog post - simply use the comment form at the bottom of the page. You could include details of life before your diagnosis, the challenges you have faced, the support from family and friends and perhaps any tips or resources that may help others who are diagnosed after you.

If you have any questions or concerns, please feel free to contact me with via personal message or on 1800 500 258.

parsifal

Thanks Daina.

I'm having a mastectomy soon and am concerned about the future. If there are other men who have been through similar procedures or are facing them I'd like to share their experience and insights. 

Al 

parsifal

Thanks Daina.

I'm having a mastectomy soon and am concerned about the future. If there are other men who have been through similar procedures or are facing them I'd like to share their experience and insights. 

Al 

ctsteel

Hi Al

I was diagnosed in April last year (stage 2a early breast cancer) - I had a mastectomy a week later followed by chemotherapy, herceptin and also radiation therapy.  I'm also on Tamoxifen for another 4ish years as a preventative measure.  At this point 18 months after diagnosis it's considered by my specialists to be all cured/in remission.

You may not need all of the treatments I went through as it will depend on your particular circumstances - in my case, when I had the mastectomy, the surgeon performed a sentinel node biopsy and initially the results during the surgery looked clear, so they left my axillary nodes intact (which I'm glad for as it increases risk of lymphodema etc).  In the post-surgery lab tests they found some microscopic traces of cancer cells in the closest lymph node, so on discussion with my surgeon later we decided it was a good safety precaution to do the chemo/herceptin/tamoxifen approach.  The radiation was likewise a safeguard to make extra sure.

One thing I liked to remind myself of in those early days when the diagnosis was fairly new and I was looking at things like the 5 year statistic rates etc - a lot of the figures are averaged out across the whole spectrum of severity and genders etc so it's good to not get too focussed on those averages - they don't have to apply directly to your particular circumstances.  With the treatment I received factored in, the guesstimate 5 years rate my surgeon calculated (based on a US cancer clinic website tool) was around 96% which is a lot higher than the average figures. 

The few weeks after the surgery (when you're healing up and have the drainage bags in etc) are when some of this might sink in a bit more (it was the case for me because it was so rapid from diagnosis to surgery), so it's good to keep yourself aimed at the positives as much as possible.  I can also attest that I felt SO MUCH better immediately that the final drainage tube was removed a couple of weeks after surgery - that alone puts a new lease of life into you after having a tube and bag as your constant companion for a couple of weeks.  I still have a little bit of fluid that accumulates in a small pocket at the surgery site but it doesn't cause discomfort (I can go to gym/jog etc and not notice). 

Are there any particular questions or aspects of my experience that you were curious about?  I can describe my general experience around the mastectomy recovery and other treatments but if there's something in particular just ask.

cheers

Chris

[Deleted User]

Hi Al,

I'm glad you found and joined this group and that Chris has been able to share his experience with you. I hope you connect with him and other men for support during this tough time.

If you need anything from me just shout.

~Daina

parsifal

Many thanks Chris. The 5 year survival milestone seems to be something rightly worth a substantial celebration, and I hope it continues to go well for you.

I take your point about reality setting in with the drain etc. The surgeon was keen to reassure me I wouldn't likely have one under my armpit, just my chest for a week or so, during which I figured I'd be pretty dopey anyway.

I'm also scheduled for a sentinel node biopsy on the morning of the surgery, but the surgeon has also been very reassuring about that in terms of the chance of finding any rogue cells. I'm starting to suspect that oncologists are habitually reassuring in order to keep patients from getting too anxious.

I'm lucky to have caught the tumour so early while it's a DCIS, so at this stage it's not planned to give me chemo and/or radiotherapy. Having watched my mother when I was 10, and a number of close friends more recently, go through all that I'm feeling a lot better about a probable future in which it doesn't figure. My mother got a huge lymphodoema out of her mastectomy in 1962 and was very self conscious of it for the next 26 years.

One relatively minor thing that concerns me is golf. I was a good golfer once, then gave it away for 25 years or so, and keep vowing to get back to it once work commitments ease. I know a lot of women say thet their game actually improves after a mastectomy, but I can imagine that would not be so for men. Prior to the diagnosis I was planning a month off over Xmas and a lot of golf, but I'm presuming it will now be some time before I'm fit enough to swing a club. Does this sound right to you?

Another thing I might bring up in a wider BCNA forum is the advisability of a full body scan. A friend suggested I have this done, but no medical practitioner has brought it up, and it sounds expensive. I'm recognising this may push me a lot closer to retirement, so finances are likely to be more of an issue and I'm starting to consider which expenses are really necessary.

After the operation, did you find your strength reduced, apart from the usual post-operative weakness? For example, do you feel you need to be more careful when lifting anything as a result of the surgery?

best wishes

Alan  

ctsteel

Hi Alan

It's great news (relatively speaking of course) that it was caught so early for you - not having to do chemo/radiation etc is a good outcome as the side effects from those have lasted more than the surgery; for example the radiation killed off almost all of my chest hair on the side that was blasted - probably a boon for ladies getting treatment (not that I'd dare suggest they had any to begin with!) but for myself as a fairly hirsute chap it is now my most obvious eye-catching reminder of my treatment - the scar where my nipple used to be doesn't bother me at all really but I'm more keenly aware that walking through the gym change room without my shirt means the large square bare area of my chest will be more likely to draw attention).

I found my energy levels for the week or so after surgery were pretty low - I spent the time on the couch and didn't have much energy for conversation etc.  I wasn't allowed to drive while the bags where in, which meant I had to get my dad to take me to appointments as my wife had just had knee surgery a month prior to my diagnosis and wasn't allowed to drive either.  What a pair we were at the time - both of us couch ridden and unable to drive - and then my wife discovered she was pregnant a couple of weeks post surgery (we're both in our 30s) so that made for more interesting times over the coming months as well   We now have a 10month old son.

For the first few weeks after the surgery there are some exercises they give you to do (stretching arms up/forward/back etc) which are to keep the arm and shoulder from getting too tight - you do them a few times a day every day and after the first couple of times I found I was pretty much able to reach to full extension again (if a bit slow and tenderly).  Since then my arm extension has stayed as it was and hasn't created any big issues - there's a slight feeling of the skin being tight near my armpit at full extension but it doesn't stop me from moving my arm to full stretch.

I'd probably guess you would need a month or two before getting into full golf swing but your breast care nurse and surgeon would be able to advise on that through the follow up visits as it will depend on how you go with the stretches and how the surgery site heals up overall - it can take some months for the seroma fluid that builds in the wound site to settle down too but again that will depend on your own body's reaction to the surgery.

Between surgery and chemo I was booked in for a torso CT scan and also a full body bone scan so they could check for presence of any tumours elsewhere as a precaution, which maybe was due to my diagnosis finding some cells in the lymph node - my wife wanted me to push for a full body PET scan too which can be more detailed in its search, but isn't routinely prescribed (I guess for cost vs realistic usefulness reasons).  I didn't worry about that one as I was pretty comfortable with the low risk level for myself so I can't really comment further about whether it's advised.

A couple of things to consider re finances - if you have income protection already set up then check into their handling of trauma situations (ie cancer) as this can involve a one time payment (could be tens of thousands) to help with those situations.  I was unfortunately always forgetting to sort this out so we had to rely on our own finances but we did so - once you get to a certain threshold with medicare then about 90% of your costs get refunded, and your private health cover if you have it should cover the surgery hospital stay (I went in on a Friday and was discharged on the Sunday).

Re my strength post-op - nothing long term has been impacted - my surgeon told me that he didn't remove any pectoral muscle so it was just the breast tissue itself that was removed - assuming this to be the case for yourself, the raw strength should be okay, it's just more keeping your flexibility up and trying to keep the scar tissue from limiting your motion.

I recall the first month or two post surgery it was still a bit tender around the site, and even now there's some numbness and sensation of tenderness in some spots where the nerves were damaged but it doesn't change what I can do - I go to gym a couple of times a week, use the weights and cardio machines and it's the same as before.  I have a bad shoulder on the same side as the surgery which I've had for about 10 years and that causes me more issue than the mastectomy.

I think if you allow yourself to build up slowly in the weeks following surgery with the provided exercises you'll soon see improvement and get back to where you used to be with your arm motion. 

cheers

Chris

parsifal

That's all good advice. Many thanks Chris. I didn't realise you were so young, and having a baby makes surviving and thriving so much more important.

I'm 60 and my kids are independent, however we've got a 4 month old grandson whom I'm very much looking forward to watching grow up.  

No doubt other questions will occur to me over the next 10 days as I prepare for surgery, so I'd like to be able to seek your counsel.

best

Alan 

traveltext

Deal with it, stay positive, and get on with life.

When I heard that diagnosis from my family doctor in March 2015, I was not overly surprised. Ten years earlier a mammogram of lumps in my left breast proved negative, and after feeling lumps again, I’d convinced my doctor to order an ultrasound. After this, a biopsy was scheduled and I was subsequently deemed to have Invasive Ductal Carcinoma with dermal lymphatic invasion, Stage IIIb, Grade 3, ER+/PR+, HER2-. These statistics I used to thoroughly investigate my condition and survival chances as I busily searched the Internet for any information on my disease, and particularly in relation to males. 

Because the breast became inflamed, the surgeon decided that she would send me to the oncologist, to start neo-adjuvant treatment, where chemo precedes surgery. The oncologist was keen to get chemotherapy started immediately. Chemo lasted 18 weeks, and was one day each three weeks. There were three lots of FEC (Fluorouracil, Ellence, and Cytoxan) and three of Docetaxol. I have to say, that chemo went very well for me and I tolerated the drugs without the various dreaded side effects. I understand that modern anti-nausea drugs have helped people cope and I felt grateful for that. I consciously decided to keep doing my work as though nothing was happening. While hair loss and a “chemo look” were the most obvious outward signs, inwardly I felt strong. I was determined to get the treatment behind me, and during this time I was well supported by may partner, Julie, and by a great network from the various cancer organizations.

The Surgery that followed was extensive, since 2/23 lymph nodes were tumorous, all those under my arm were removed along with the breast tissue. I was lucky to have a very skilful surgeon, and she was amused when I asked “is there was any reconstruction?”. While it is possible to rebuild a facsimile of a guy’s breast, she explained, the lack of extra material makes it harder and actually inhibits the surgeon who really has to work hard to round up the affected tissue, since cancer often travels further in male breasts. 

Following chemo, I started 25 radiation treatments, five a week for five weeks. Again, this was more of an inconvenience than a bad experience, and I understood that this treatment was “insurance” in that it was aimed at rounding up cancer cells in my skin and in the chest wall.

Now, about to turn 65, and well settled on the recommended Tamoxifen regimen, fortunately with none of the listed side effects, I’m optimistic about my future. I feel that I have been lucky to have had such excellent treatment in my rural area without having to travel to a major center. Interestingly, all the doctors treating me were women, and I found this very reassuring. I’ve also discovered some great websites on male breast cancer and, while guys don’t talk about medical issues as intimately as women, there is plenty of chatter out there.

After genetic testing, I was found to have a variation of the BRCA1 gene which is, as yet, unmapped. My Mum died at 41 with breast cancer, and I have made my siblings, kids and other relatives breast aware, so that they know to screen themselves regularly. My daughter, who is 42, is in a breast screening program, although she hasn't had a gene test.

After treatment, I was invited by Cancer Council Queensland to become a Cancer Connect volunteer to help other men come to terms with their diagnosis and treatment. I attended a two-day training seminar in my nearest city, Brisbane, and have, to date, telephone counselled two men who requested support from a guy who had been through the medical system as a breast cancer patient.

I’m very relaxed about my future and keen to continue managing my Internet publishing business at Cooroy on the Sunshine Coast, working for a number of community organisations, and enjoying watching my grandkids grow up. Life with has never been better.

Rod Ritchie, August 2015