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Topic: Traveltext talks about his experience with male breast cancer

Forum: Male Breast Cancer — For men who have been diagnosed or are at high risk.

Posted on: Nov 23, 2016 11:57AM

Moderators wrote:

Take a look at his blog, and please share comments!

Adding some blue on the pink


Editor's Note: Movember is an annual event for which men grow moustaches during the month of November to raise awareness of various men's health issues, with the ultimate goal to reduce the number of men dying prematurely. While Male Breast Cancer Awareness Week is the third week of October, Breastcancer.org Community member Traveltext wants to share his story in November to let people know that breast cancer is also a health issue that affects men.

A recent survey has found that 80% of men at higher risk of breast cancer aren't aware that they can be diagnosed with the disease. While men make up just 1% of the total breast cancer diagnoses, this is the same percentage as women under 30 who are diagnosed. Let's make sure men are aware of their risks, particularly those with a family history of the disease.

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I'm a 66-year-old man, two years post-treatment for inflammatory breast cancer, happy to share my experiences and, particularly, to help raise awareness. Upon [my] diagnosis, friends and family reflected the community's varying understanding about males and breast cancer in that most were unaware that guys get this disease, too.

It took me three months to convince my general physician that my breast lumps needed scanning, despite a family history of breast cancer. This meant that I was diagnosed at stage IIIB and had to undergo neoadjuvant treatment consisting of chemo, surgery with axillary clearance, and radiation. I tolerated the treatment well and am now on tamoxifen. I am always quick to point out that the care I received was first class and as equal to that of the many women I was treated alongside. Subsequent genetic testing showed that I had a variation of the BRCA1 gene of an unknown significance. Naturally, I let my three male siblings and my son know of their risk, and my 43-year-old daughter has joined a screening program.

I'd have to say that I felt no stigma as a man with this disease, although as I sought help from discussion forums like Breastcancer.org, it struck me that I really was one of the few guys looking for help. I also realized that many pink charities were not doing enough to point out that many men, particularly those with a genetic predisposition, are not being made aware of their risk.

Despite the male breast cancer discussion boards here being rarely used in recent times, I found support and went on to give support to a wonderful group of women at my cancer stage. Since no men posted regularly, I supposed that most guys are loathe to discuss their condition here because they were embarrassed by their diagnosis or that they don't believe women's experiences could help them. However, I have had private messages from several men looking for support outside a public posting and have used my training as a cancer connect telephone counselor to help them with advice, but mostly just to listen to their concerns.

Two years post treatment for breast cancer, my general physician was alarmed at a steep rise in my PSA level, so she sent me to a urologist for scans. Sure enough, a 16 mm tumor was discovered on one side of my prostate, and a biopsy showed an intermediate grade cancer with a Gleason score of 7. I have just completed a successful robotic prostatectomy where the pathology proved clear margins and no lymph involvement. Naturally I'm very pleased to discover that no further treatment is necessary. It turns out that nearly 30% of men who get breast cancer go on to develop a prostate cancer.

It's interesting to record that it took me seven months to get NED with breast cancer and just seven days to achieve the same result for my prostate cancer.

Since later diagnosis leads to poorer prognosis, let's help men with awareness, screen those with hereditary risk, and encourage research on male breast cancer.

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Nov 23, 2016 12:05PM MinusTwo wrote:

TravelText - thanks for letting the mods post your story here. I've been wondering how your prostate surgery went. So glad to hear clear margins & no lymph involvement. Hope the SEs are either not bad or diminishing.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Nov 23, 2016 11:16PM eggroll wrote:

I love your voice piping up throughout the forums. You are a great member of the community. I'm so happy you are NED. NOW, for the really important question... how are you going to celebrate this latest victory? Time to go traveling or something?! My husband and I love travelling... what are your top 3 favorite destinations? Or do you only write about it? I write newsletters for charities... almost 20 years. I'm ready for a new career. Or retirement would be good, too.

Dx 9/8/2015, IDC, Left, <1cm, Stage IA, Grade 1, 0/6 nodes, ER+/PR+, HER2- (IHC) Surgery 10/22/2015 Lymph node removal: Sentinel Radiation Therapy Surgery Lumpectomy: Left
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Nov 23, 2016 11:57PM Traveltext wrote:

Thanks Eggroll, I try not to pipe up unnecessarily, but sometimes I can't help myself. My main thread, though, is the IBC Lounge, where people need all the help they can get, just as I did when I found BCO. Today being Thanksgiving here, my partner (Maine born and bred) suggests we can use the occasion to celebrate great health outcomes. The preparations are underway. As to the travel, I went to Beijing earlier this year as a tourist to visit my daughter and her family. Fascinating city in a fascinating country. My guide book writing jobs de-escalated over the past couple of years, but the top three places I've written about are Kyoto, Singapore and Barcelona. Good on you for writing newsletters, I'm sure everyone is hoping you don't retire. Sounds like you are ready for some travel again! What are your favorite places?


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Nov 24, 2016 11:14AM Moderators wrote:

Happy Thanksgiving to you all! And, thanks Traveltext for your blog!


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Nov 25, 2016 09:57AM - edited Dec 18, 2016 06:01AM by Seanathair

Thank you for telling your story, Tt. As a 72 year old man who had a mastectomy last month, I can relate. Right after my diagnosis, I thought of my tumor as being like an outside invasion -- an invasion from Mars. But recently I have begun to think of it as a mistake -- a genetic mistake -- that might be a doorway to some sort of discovery. Discovery of what I don't fully understand but having taken ownership of it, I feel better able to deal with it. How we look at things may not change the facts but it really can make a difference.

Sean

Dx 9/22/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 10/25/2016 Lymph node removal: Sentinel; Mastectomy: Left
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Nov 25, 2016 02:26PM Traveltext wrote:

Well put Seanathair. Cancer is certainly a mistake, either genetic or cellular or both. Once it's in our body, treatments along with our immune system may keep it at bay, but we do need to own the disease if we are to become long-term survivors. Welcome to BCO. I hope you stay in the community to share your experiences and seek advice if necessary.


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

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Feb 6, 2017 07:42AM cliff wrote:

my dna test came back negative. only one aunt had breast cancer in my family. I had the dna test because my two kids are of age, and I didn't want any surprises for them like mine. my surgery was last aprit, 2016. on tamoxafen, and seems to be getting a bit less each scan. I don't know why, but my kind of cancer seems to be from the body fat turning testosterone into estrogen between 65 and 70 years old. as usual, stage 4 before found, spread to a rib and the base of my spine.

I HATE CANCER, its trying to keep me from properly spoiling my first grandchild, a girl, pretty and quiet.

Dx 3/16/2016, IDC, Left, 1cm, Stage IV, metastasized to bone, 2/21 nodes, ER+/PR-, HER2- Surgery 3/31/2016 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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