Topic: Guys who have joined the pink brigade

Forum: Acknowledging and honoring our Community — Share accomplishments, milestones, goals of community members, family members or yourself.

Posted on: Sep 13, 2015 10:14PM

Posted on: Sep 13, 2015 10:14PM

traveltext wrote:

"I'm sorry to say, but you have breast cancer." 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. Just after viewing the monitor of the scan, the technician ominously left the room. 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 first thing the oncologist said to me was, "Do you have a family history?" My answer was "yes".

When I was about 10, I caught sight of my mother coming out of the shower. Where her breast should have been, was nothing except purple skin and scar tissue. Over 50 years later, that image is still burned into my brain. Treatment in those days consisted of a very radical mastectomy and intense radiation – very mutilating and rarely effective. Only a couple of years after this, Mum was admitted to hospital, likely with metastasis, where she died, aged 41.

The oncologist was keen to get my 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 my partner, Julie, and by a great network from the various cancer organizations and websites.

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 skillful surgeon, and she was amused when I asked "if 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, aged 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. I have to say that BCO has been my prime point of information and online support, and I have received much help from many women. This has been important, because affected men are not very active on this site either.

After genetic testing, I was found to have a variation of the BRCA1 gene, which is, as yet, unmapped. With breast cancer in my family history, I have made my siblings, kids and other relatives breast aware, so that they know to screen themselves regularly. While I didn't want to worry people unnecessarily, I didn't want to underplay the threat to them either. 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.

Men with breast cancer have a slightly lesser chance of survival than women, primarily because they are diagnosed later, since they and their health practitioners are not recognizing symptoms of the disease early enough. Unfortunately, there is the lack of male-specific clinical research and trials due to the small cohort of patients. Because treatment for men is based on that for women, there will only be more research when better treatment data from males is collated and analyzed.

Because it is important to raise awareness of one of the most prevalent cancers in women, pink has been chosen to denote the disease. But is this not reinforcing the common perception that males don't get breast cancer?

As a man who is happy to talk about his breast cancer diagnosis and treatment, 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. Last year, I was invited to address a crowd of Pinktober fun runners raising money for breast cancer research in my small town. Wearing a blue t-shirt to contrast the mass of pink in the crowd, I wanted to signify the fact that while 99% of breast cancer cases are women, men need to be made aware that they can get breast cancer too.

So, when the ubiquitous pink ribbons and associated merchandise rolls out each October for breast cancer awareness, let's consider including a small patch of blue.

NED breast and prostate cancer. 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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Sep 13, 2015 10:26PM 3-16-2011 wrote:

Thank you for your words. I lost my father to breast cancer in 2005. Lets do remember men are dx with this disease.

3-16-2011 Dx 3/16/2011, IDC, 2cm, Stage IIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Chemotherapy 5/3/2011 AC + T (Taxol) Surgery 10/18/2011 Prophylactic ovary removal Radiation Therapy 11/10/2011 Surgery 10/10/2012 Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Dx 11/5/2014, Stage IV, ER+/PR+ Hormonal Therapy 1/1/2015 Aromasin (exemestane) Targeted Therapy 10/15/2015 Afinitor (everolimus)
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Sep 14, 2015 08:34PM Kiki13 wrote:

Thank you for your post, Traveltext. I appreciate you being a voice for the guys. With the sea of pink already beginning, I'll gladly remind folks to include a little blue.

"Don't count the days, make the days count" - Muhammad Ali. Dx'ed age 49. 1.9 cm. Dx 9/2014, ILC, Right, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2-, Surgery 11/7/2014 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 12/2/2014 Multi-catheter: Breast Hormonal Therapy 1/2/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 2/1/2018 Femara (letrozole) Hormonal Therapy 2/1/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 15, 2015 07:51PM glennie19 wrote:

((traveltext)) Thank you for your post. I have a male friend with breast and prostate cancer. He's on tamoxifen and dealing with hot flashes. There definitely needs to be some blue in that sea of pink.

glennie

Fibromyalgia and Truncal Lymphedema,,, some of the fun things I live with. Total hysterecomy 9/29/14 Prophy MX Righty 11/30/17 Dx 6/27/2013, Paget's, 1cm, Stage 0, Grade 3, 0/6 nodes, ER+/PR+, HER2- Surgery 8/8/2013 Lymph node removal; Lymph node removal (Left): Sentinel; Mastectomy; Mastectomy (Left) Dx DCIS
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Sep 16, 2015 05:19AM traveltext wrote:

Glennie19. Suggest to your friend that he takes his daily Tamoxifen just before bedtime to see if this reduces his hot flashes. 


NED breast and prostate cancer. 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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Sep 24, 2015 10:58PM new__me wrote:

  • My father was diagnosed with breast cancer at age 90. Underwent radical mastectomy with no further treatment. He is 93 and a true survivor. He does not have the breast cancer gene.
Diane. BRCA2+ and a DES daughter (exposed to DES in utero). Age 62, wife, mother of 2 and grandmother of 2. Extensive BC and OC in family. Daughter (31) neg for BRC2. Son (36) not tested yet. Surgery 9/1/2015 Prophylactic ovary removal Surgery 11/20/2015 Lymph node removal: Sentinel; Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 3/16/2016 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant
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Sep 25, 2015 05:08AM - edited Sep 25, 2015 05:08AM by traveltext

Such surgery at 90, wow! He must be one tough guy. I wish him all the best. 


NED breast and prostate cancer. 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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Sep 25, 2015 05:33PM glennie19 wrote:

Traveltext: will do! Thanks!

Fibromyalgia and Truncal Lymphedema,,, some of the fun things I live with. Total hysterecomy 9/29/14 Prophy MX Righty 11/30/17 Dx 6/27/2013, Paget's, 1cm, Stage 0, Grade 3, 0/6 nodes, ER+/PR+, HER2- Surgery 8/8/2013 Lymph node removal; Lymph node removal (Left): Sentinel; Mastectomy; Mastectomy (Left) Dx DCIS
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Feb 16, 2017 12:18PM cliff wrote:

quite eloquent and informative. my diagnosis was quite a surprise, from initial "whats this doc? it kinda hurts" to surgery was only 2 weeks. not much time to look stuff up or even worry a lot. the worrying came later when I read the outdated scarry stuff on the internet. my family has helped a lot, taking me to appointments, mostly , I think to remember what the doctor says, reminding me of appointments, cancer is quite unfair to the family of the patient also, grumping around the house like an old bear with a toothache. It makes you appreciate them more. It would really be terrible to be alone through all this. Now I have to concentrate on spoiling my new granddaughter, 3 months old and extremely cute. In order to properly, world class spoil her, I will have to stick around for a long time.

Dx 3/16/2016, IDC, Left, 1cm, Stage IV, metastasized to bone, 2/21 nodes, ER+/PR-, HER2- Surgery 4/1/2016 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 16, 2017 06:10PM traveltext wrote:

Thanks cliff. My diagnosis was delayed, like yours, and we need to make the pink charities take us into account in their publicity campaigns. Thirty percent public awareness that men get this disease too is not good enough.

Be sure to stick around here and keep us posted on your treatment.


NED breast and prostate cancer. 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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