Male...yes MALE breast cancer!

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  • topdubu
    topdubu Member Posts: 23
    edited August 2018

    Thanks. The people in this territory were awesome.

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  • Fiddleman
    Fiddleman Member Posts: 59
    edited September 2018

    Fiddleman is back. It's been a while since my last post since things up to now seemed well on track. I had been putting my energies into MBC awareness locally and returning to a full rehearsal/performance schedule. Also, like many, I was focused on being 5 years free and looking forward to another 5 after that. That may no longer be the case. During my routine followup with my oncologist this week, they discovered two enlarged lymph glands near the right clavicle, the largest 1.2cm. I recently have had some occasional odd feelings when swallowing (though I do have a hiatal hernia and gerd), have been aware of a rhythmic pulsing in the right ear and shooting pains in my cranium (though my GP thought they might be mild migraines). Now I'm thinking...symptoms of recurrence? The docs did a sonogram and then scheduled me for a biopsy next Thursday (and depending on those results a possible CAT scan). The mere thought of the beast reviving after only 2.5 years is terrifying. I know I should not be worried until there's something to really worry about, but, as I've seen in many posts, this interminable waiting is locked and loaded with anxiety and what-ifs. I've been really positive through this abduction (I refuse to call it a journey) so far and have had a lot of support from this forum (shout out here to Traveltext) and other resources, including Komen of Upstate NY (among whose founders is the first guy I met with MBC, and a 17 year survivor). I have every confidence in my medical team and know that if this is Stage IV, there are many guys who have lived long and productively in spite of it. I just dread more surgery, more chemo, more rad and more hormones. Not knowing is the pits. At least when you find out the results you have concrete options, none of which,unfortunately, are good . However there is good news in that they would not start therapy until about mid Oct., so we're still going on our 25th Anniversary trip to LA and the Galapagos at the end of Sept. Regardless of the outcome, that's a true bucket list JOURNEY. I guess I needed to vent, and I could think of a no more supportive and understanding venue. Thanks!

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  • Runrcrb
    Runrcrb Member Posts: 577
    edited September 2018

    Fiddleman - I'm sorry you're back and I'm glad you are focussed on the 25th anniversary trip next month. Enjoy the experiences! I, too, refuse to call this a journey and I love your reference as an abduction. I agree that it's more fitting description.


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  • Fiddleman
    Fiddleman Member Posts: 59
    edited September 2018

    Thanks Runcrb. I am focusing on the trip as much as I can. Though not happy to have to revisit this MBC forum again, I am delighted that I can connect with fellow "abductees" who are knowledgeable and supportive.

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited September 2018

    Hi Fiddleman - I'm sorry that you're here. Sending positive thoughts to you for negative test results. I was diagnosed stage 4 de novo so I can only imagine how unsettling and upsetting it must be to have so much time in remission and then to have a scare. I have no doubt that the fear of cancer lurking is always in the back of ones mind no matter how much time has passed.

    I hope you are able to take some deep breaths and enjoy your trip to the Galápagos Islands. Breathe get some fresh air laugh if you can cry if you need to.

    We are here for you no matter what.

    There is a forum on these boards dedicated to male breast cancer if you’d like to connect with other men (not that us chickies are all that bad 😉). Here is the link https://community.breastcancer.org/forum/51/topics/773063

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  • Fiddleman
    Fiddleman Member Posts: 59
    edited September 2018

    Thanks, LovefromPhilly. No matter how, when or where it comes from, the words Stage IV are not ones you want in the same sentence as your name. Yup, focusing on the trip and taking deep breaths (frequently after holding my breath...HA!) I'd been doing Tai-Chi until I injured my knee a couple of weeks back, but the training on mindfulness and focus is still helpful. When first diagnosed with this I found, and started posting on, the Male BC boards, and have since revisited them, but I've frequently found women's perspectives interesting and helpful. This is no exception, as I was raised in North Philly near Broad and Erie. Back then it was a largely safe and clean neighborhood but, sadly, no longer so. Used to travel all over the city on the bus, trolley and subway and spent many happy hours at the Franklin Institute , the Philly Art Museum and Wissahickon Creek Park. Would you mind sharing where in the city you live? Nice to touch base with a "homie".

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  • topdubu
    topdubu Member Posts: 23
    edited September 2018

    Sorry to hear this but from a stage IV guy for now 22 months it is good to see that you are not letting the grass grow under your feet. I must say that I have refused to apply the Bucket List name as that implies an end. Of course there will be one but I'm running as fast as possible--travel as much as you can--those kids do not need your money. Best Wishes.

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited September 2018

    Fiddleman any updates on your scans?

    Yes Philly native here!! Oh yes I know those streets and yeah they are a bit rough these days. The heroin epidemic has made that area really hard to spend time in because there are so many people suffering with the disease of addiction. It is heart breaking!

    I grew up in the northeast and then spent my teenage years in East Oak Lane neighborhood. Then I moved away for a while but when I came back I've lived in Center City, Fishtown, Kensington and now I'm back in Center City close to Rittenhouse. I'm in a very lively and busy neighborhood and I love it!

    The city has changed so much since you have lived here. It would be interesting for you to come back and visit!

    Hugs to all!

    Brenda

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  • Fiddleman
    Fiddleman Member Posts: 59
    edited October 2018

    Hi Brenda, and sorry for not posting sooner.We just got back from the trip and then were faced with testing and the now devastating result . The BEAST has indeed taken up residence in the lung proper, also where the bronchi enter the lung and in my chest.Yep, now Stage IV since the Tamo did not work.I start on Leuprolide with monthly injections and Letrozole for 28 days (both block upstream conversion of testosterone to estrogen) along with Palbociclib to block the cell reproductive cycle. Treatment starts this Thurs. and continues for as long as it works.Fortunately, I have good insurance. Sounds like we have more in common than just a former residence.I'm just hoping it buys me enough time to see positive results from the immunotherapy research on MBC, though I do dread the side effects.

    Also, fortunately, my wife and I have the memories of an amazing trip.For this ex-biology teacher to walk in the shoes of Charles Darwin and see the diversity of topography, micro-climates and resulting animal and plant life was as close to a mystical experience as I've had in a long time.

    Where did you attend high school?I graduated from Central in the day when it was exclusively academic, and male.Thank heaven Girls High was right across the street! I have no family or friends left in Philly, so unless there's a compelling exhibit at the Museum of Art, I'm unlikely to visit.Already seen Indi Hall, the Bell, Betsy Ross House, Valley Forge…well you know all the tourist sites as well as I.

    Don't worry.I'll still keep on fighting and, though I was never a real scientist, I can still be a great lab rat.LOL!I'm still advocating for Male BC awareness and you might want to check out the interview I did for a local TV station last night:

    https://www.wkbw.com/news/akron-man-speaks-out-about-male-breast-cancer

    Hope you are doing well and best wishes to all who have been abducted by THE BEAST.

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  • Fiddleman
    Fiddleman Member Posts: 59
    edited October 2018

    Thanks, topdubu. Knowing there are other guys out there fighting and not giving up is a source of encouragement and hope. My doc says we're talking in years, not months…but he did not mention decades. We've decided to take it 2 years at a time and are already planning our next trip. Make memories while we can and appreciate every moment. Cling close to family and friends and do not fear to share both the good and the bad. Yeah, "Bucket List" does have some negative connotations, but maybe I can make that "bucket" one that hangs under a hot air balloon at the Albuquerque Balloon Festival! Hope you are still doing well and check out my response to LoveFromPhilly for more info if you're interested.

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  • KiwiCatMom
    KiwiCatMom Member Posts: 2,553
    edited November 2018

    Sorry to intrude on the thread, but wanted to say a huge THANK YOU to Dave for starting this thread. I haven't been on the discussion boards for quite some time, but was scrolling through and saw this. I live in New Zealand (former American) and am fighting the system here to get funding for "really expensive experimental drugs" like Faslodex. Grrr. That's a whole story. Anyway, we were denied a meeting with the Minister of Health because "it's a women's disease and doesn't concern me". I think the ignorance surrounding male breast cancer leads to poorer outcomes. Education is so desperately needed.

    I'm in a Facebook group for New Zealand Metavivors and we had men, but sadly, they have passed. So we're certainly aware of it and please know that you have a huge group of women in New Zealand who are working hard to educate people about Stage 4 and male breast cancer.

    Sending big hugs!


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  • Superdave69
    Superdave69 Member Posts: 9
    edited November 2018

    Kiwicatmom,

    You are not intruding at all! There were a string of messages that seemed to be completely unrelated to the original topic so your fine! Im very sorry to hear about your issues with paying for meds. You know, peopme are quick to jump on the socialized medicine but when i read about issues like yours i second guess that. The ignorance level is off the chart there! I would understand if the said Men dont get cervical cancer or ovarian, but wow. Yes there have been lots of guys on this thread that have reported they have it. Officially the odds are 1 in 100 male to female ratio. Even cancer centers...some of the signs saying, curing breast cancer one woman at a time or similar. I just wanted to spread awareness. The crummy part is that 99.9% of the medication is centered around female anatomy and biology. There is almost no research done for men. I am stage 4 because my doctor said not to worry about the lump under my nipple. So I did and it spread like wilfire. Now its in my bones and there is a spot on my lung.

    I truly hope they get you or your medicine straightened out. Keep me posted on your progress. I will too. Im on faslodex and Ibrance now. I think it might be losing its effectiveness lately. On to the next....

    Take care and best of luck to you.

    Dave

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  • Fiddleman
    Fiddleman Member Posts: 59
    edited November 2018

    Hi Kiwicatmom & Superdave,

    I'm so sorry Kiwicatmom for your battle with the bureaucracy. I've been PM'ing with Traveltext for about 2 years now and he's from AU. He and another Aussie MBC guy finally got the "federales" to declare a nation wide proclamation of male breast cancer awareness day. There is an active group of guys trying to shine light on ignorance in your corner of the world. You might want to contact him for possible plans of attack as he has worked with cancer patients, and is an MBC activist. He might have some ideas to help you penetrate the political armor of ignorance.

    Dave, I understand your frustration with lack of male-specific research into treatments. I'm more than a little po'ed myself about it. But, from what I understand, the male breast cancer cohort is so small that valid statistical analysis is not really possible, hence the use of "female" protocols for treatment. Not only that but (and you have every right to be mad as hell over it) males with BC don't usually last long enough to allow longitudinal studies due to their usually late stage of diagnosis. The only data available for males are anecdotal, and no pharma company will act on that alone. The best we can do is continue to be, "...the voice of one crying in the wilderness."

    We sure don't want a greater percentage of males getting the BEAST, so I guess the female research is the best we have. Hopefully you have an oncologist that recognizes the difference between male and female hormone balances and can adjust the dosages effectively. I am on lupron injections as well as letrozole and ibrance. Luckily for me my insurance is covering it, but who knows about the next (and probably more expensive) round of therapy once this protocol's effectiveness dwindles. I feel so badly for those who lack financial resources to take advantage of all the newer therapies that are now available and are in the pipeline. I know there are problems with single payer, but at least it makes some of this treatment affordable for more victims, both male and female.

    In Hope,

    Barry

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  • topdubu
    topdubu Member Posts: 23
    edited December 2018

    Hi Dave, We are simpatico on the recurrence date. 12/16 was my official month. I've been on Ibrance and Letrozole and have for the most part tolerated it ok. I also had bone mets and some pretty serious involvement with the lining of my right lung. My meds have shoved the evil genie back into the bottle for now. The biggest side effect is chemically induced arthritis in my hands for about the last seven months.. I am trying everything to make this go away as I do not want to change meds. Your stuff working ok? Best, Allen

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