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Topic: Male...yes MALE breast cancer!

Forum: Stage IV/Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Jun 5, 2018 07:40PM

Superdave69 wrote:

I was diagnosed with stage 4 MALE breast cancer early 2017. Ever since I have noticed a very common theme. Nobody seems to understand or know that Men get breast cancer! Even this site which has really helped me is super guilty about addressing only women's concerns and issues. As a result, I think men's outcomes are much worse. I have said many times that breast cancer is far more traumatic for women because of loss of hair and sometimes body parts is much harder for the ladies. I am bald now and nobody even asked if I had cancer. I feel for the ladies. I know its harder on you because of social norms.  

 I just wanted to shout out to all the other men that are going through this too. Hang in there. You are not alone. feel free to tell your story if you are a guy going through this too.

Stage IV with bone mets PR+/ER+/HER2+ diagnosed Jan 2017 Dx 1/15/2017, IDC, Right, 5cm, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2+ (FISH) Targeted Therapy 2/15/2017 Herceptin (trastuzumab) Hormonal Therapy 2/15/2017 Arimidex (anastrozole) Targeted Therapy 5/30/2017 Herceptin (trastuzumab) Targeted Therapy 5/30/2017 Perjeta (pertuzumab) Chemotherapy 5/30/2017 Taxotere (docetaxel) Hormonal Therapy 3/1/2018 Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy
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Jun 5, 2018 08:01PM FaithsMama wrote:

superdave69; I think this site is more heavy laden with how BC affects women because the % of women diagnosed with BC far out numbers that of men diagnosed. Also, the affects of BC to a woman's body is far more invasive to that of a man. NOT to diminish what you are going through. I am sorry you weren't given the sympathy you needed for your hair loss. What outcomes are you referring to that are "much worse" for men? With women we have our breasts amputated, lose our hair, lose feeling in our chest and arms, have lifelong sexual dysfunction from the treatment, night sweats, and more. I don't think it's a matter of "who suffers more." We ALL suffer from the cancer. Just curious what hormone treatment you go through as a man with hormone receptive cancer? 

Dx 3/30/2018, IDC, Right, 1cm, Grade 2, ER+/PR-, HER2- (IHC) Dx 3/30/2018, IDC, Right, 1cm, Grade 2, ER+/PR+, HER2- (IHC) Surgery 5/18/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement
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Jun 5, 2018 08:54PM Superdave69 wrote:

Hi Faithsmama!

First, thank you for your reply! Believe it or not i was never looking for sympathy for hair loss or any sympathy really. I did say this disease is more traumatic for women because of loss of hair and body parts.

The reason i said the outcomes for men is much worse is multifold. First of all, if men do not know they can get breast cancer (i certainly didnt) then they are likely to be stage 3 or 4 by the time they are diagnosed like i was. Stage 4 at diagnosis. Most of the research and clinical trials for therapies are targeted towards women for obvious reasons. Plus statistically speaking men have shorter life expectancy after diagnosis according to NIH. Thats what i meant by that.

It just seems like when the topic comes up, everyone expects it to be women that are affected. My post was more of a PSA than anything to bring awareness.

"our hair, lose feeling in our chest and arms, have lifelong sexual dysfunction from the treatment, night sweats, and more" . Unfortunately I have had all of these side effects and more. I lost my eyebrows, eyelashes and nose hair that caused an infection that nearly killed me! I did not say men suffer more and you are right, it is absolutely not about that.

My goal was to let people know men get it too and its awful.

Stage IV with bone mets PR+/ER+/HER2+ diagnosed Jan 2017 Dx 1/15/2017, IDC, Right, 5cm, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2+ (FISH) Targeted Therapy 2/15/2017 Herceptin (trastuzumab) Hormonal Therapy 2/15/2017 Arimidex (anastrozole) Targeted Therapy 5/30/2017 Herceptin (trastuzumab) Targeted Therapy 5/30/2017 Perjeta (pertuzumab) Chemotherapy 5/30/2017 Taxotere (docetaxel) Hormonal Therapy 3/1/2018 Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy
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Jun 5, 2018 09:12PM 50sgirl wrote:

SuperDave,

You are right. When people think of breast cancer, they usually think of it as a woman's disease. That leaves men out in the cold in many conversations and even research projects. Women who are stage IV think we are often overlooked by "the pinks" and during breast cancer awareness month because the focus seems to be on survivors of early stage disease and prevention. There never seems to be much money targeted to MBC. The reality is, men are ignored more than women with MBC.

Where is the research for male breast cancer? Is it really the same as disease as breast cancer in females? Are there any documented differences that should drive treatment options? Even if you look to awareness and education programs, how often is male bc mentioned? Doesn't this leave men more vulnerable to missing early warning signs? Do physicians know enough about make bc to treat it effectively? Do PCPs look for signs of MBC during routine physicals?

I don't know if I agree that the disease is less traumatic for a man. I have read that some men are embarrassed to even tell people that they have bc because people think it is a woman's disease. Men still get surgery that causes scars. Men are subjected to harsh chemo and radiation, just like women. If they have early stage disease, they still worry about a recurrence. If their bc has a genetic link, they worry about their siblings, children and grandchildren, just like women do. If the have MBC, they face a lifetime of treatment, just like a woman, with the fear of what the next scan will show, just like a woman. They experience pain, just like women. Men die of MBC, just like women.

In some ways, social norms cause specific issues for men because people are unaware that male breast cancer even exists. Women are more likely to find another woman with bc to talk to, either online or in a local support group. How easy has it been for you to find another man who knows what it is like to be a male with MBC? Have you found someone to share your fears, your symptoms, your SEs, your concerns with? I think it is much easier for a woman to do that, if for no other reason because there are more of us.

Do you know how we can help this site bring make bc into more conversations? I know that I, for one, am guilty of aiming my conversations here towards women. I do think there is a thread for male breast cancer, but I don't know how active it is.

How are you doing? Is your disease stable? I noticed that you are triple+, is your treatment helping? Other than hair loss, what SEs are you having. Are they manageable? Does your oncologist treat many men with MBC? Forgive my complete lack of knowledge here, but do any oncologists specialize in male breast cancer? It seems like a good idea to me.

Thank you for pointing out something that we should all be aware of. I hope some men will post on this thread.

Hugs and prayers from, Lynne


Dx 6/5/2015, IDC, Left, 3cm, Stage IV, metastasized to bone, Grade 1, ER+/PR+, HER2- (FISH) Hormonal Therapy 6/25/2015 Arimidex (anastrozole) Dx 8/9/2016, IDC, Left, 3cm, Stage IV, metastasized to bone/liver, Grade 1, ER+/PR+, HER2- Hormonal Therapy 8/10/2016 Faslodex (fulvestrant) Targeted Therapy 8/31/2016 Ibrance (palbociclib) Hormonal Therapy 7/3/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy 10/2/2018 Xeloda (capecitabine) Chemotherapy 2/11/2019 Taxol (paclitaxel)
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Jun 5, 2018 10:07PM - edited Jun 5, 2018 10:08PM by ElaineTherese

Traveltext recently posted this picture of Ken showing Barbie his scar..... By the way, I'm triple positive too.

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/23/2014 AC Targeted Therapy 9/17/2014 Perjeta (pertuzumab) Targeted Therapy 9/17/2014 Herceptin (trastuzumab) Chemotherapy 9/17/2014 Taxol (paclitaxel) Surgery 1/12/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/25/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/9/2015 Breast, Lymph nodes
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Jun 6, 2018 07:50AM Superdave69 wrote:

🤣🤣🤣🤣🤣. Now thats kinda funny. True and funny! I wish the rest of my body looked like that!

Stage IV with bone mets PR+/ER+/HER2+ diagnosed Jan 2017 Dx 1/15/2017, IDC, Right, 5cm, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2+ (FISH) Targeted Therapy 2/15/2017 Herceptin (trastuzumab) Hormonal Therapy 2/15/2017 Arimidex (anastrozole) Targeted Therapy 5/30/2017 Herceptin (trastuzumab) Targeted Therapy 5/30/2017 Perjeta (pertuzumab) Chemotherapy 5/30/2017 Taxotere (docetaxel) Hormonal Therapy 3/1/2018 Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy
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Jun 6, 2018 08:05AM DebAL wrote:

Hi Superdave, thank you for your post. Since my diagnosis I have discussed breast cancer detection with my adult daughter and 2 son's all in their 20's. May I ask if you found a lump in your breast/ armpit or nipple changes..or what other changes? Men certainly don't get routine mammograms as a screening tool. I also hope men will post on this thread. Please know we are here to support you. I hope you are feeling well.

Dx 1/22/2018, IDC, Left, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR-, HER2- (IHC) Surgery 2/12/2018 Mastectomy: Left, Right Surgery 2/12/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/2/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 6/14/2018 Arimidex (anastrozole) Surgery 8/9/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 12/20/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery
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Jun 6, 2018 08:38AM Egads007 wrote:

When I was sitting in the breast cancer clinic for the first time I have to admit I was surprised to see a solitary man waiting among 20 women. I was only vaguely aware of men's breast cancer before that point, so seeing him brought home the fact that cancer doesn't discriminate. Sure, BC hits the ladies in enormously higher percentages, but at the end of the day the impact physically & mentally can have different but equal challenges on an individual basis....ergo, it simply sucks for anyone no matter how big or small the impact is.

Superdave, were you aware there is a forum here specifically for men? If not here is the link: https://community.breastcancer.org/forum/51

Feel free to post anywhere on the boards however, it's good to see a mix, and we're all on the same team after all. Hope you're doing well!

"I base all my fashion choices on what doesn't itch" (Gilda Radner) Chemotherapy 3/20/2013 Doxil (doxorubicin), Taxol (paclitaxel) Surgery 8/23/2013 Lumpectomy: Right; Lymph node removal: Right Radiation Therapy 11/1/2013 Whole-breast: Breast, Lymph nodes Dx IDC, 4cm, Stage IIB, Grade 3, 0/2 nodes, ER+/PR-, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 6, 2018 12:42PM Superdave69 wrote:

Wow, i am so impressed with the responses! To answer some questions...

I had a lump under my right nipple when i was 25. I had it removed and they said it was benign. It came back in 2015 and i was not at all concerned. I am now 48 btw...Even my doctor was not concerned. Then i bumped my chest on something and it was very painful and red. (Infection) in 2016. Then there were strange lumps on my skin near the site. I went to a dermatologist and she did a biopsy. The lumps all came back as positive for carcinoma. Bottom line is if you have a lump, get it checked ASAP!

I am now on Ibrance and Foslodex. I was on chemo which worked for a little while maybe 3 months then it failed. I am responding very well to Ibrance. Tumors are shrinking. Im happy with the treatment so far. My HER-2 has gone from +3 to +1 so herceptin and her 2 drugs stopped working.

I feel good overall and still work full time. Thank you all for your responses! Tell me more about yourself in your replies. I love this site. Thank you all for your well wishes and support!

Stage IV with bone mets PR+/ER+/HER2+ diagnosed Jan 2017 Dx 1/15/2017, IDC, Right, 5cm, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2+ (FISH) Targeted Therapy 2/15/2017 Herceptin (trastuzumab) Hormonal Therapy 2/15/2017 Arimidex (anastrozole) Targeted Therapy 5/30/2017 Herceptin (trastuzumab) Targeted Therapy 5/30/2017 Perjeta (pertuzumab) Chemotherapy 5/30/2017 Taxotere (docetaxel) Hormonal Therapy 3/1/2018 Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy
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Jun 6, 2018 01:47PM illimae wrote:

Superdave69, male bc should definitely get more attention then it has, I for one didn’t think much of before my own diagnosis either but I do now. My mother and her sister both had/have bc, stage 1 and 4. In a recent conversation with my brother about that he remarked that it’s a good thing he had boys, he was very surprised to hear that he/they could get it too. I’m sure the other men here will comment but keep spreading the word. Best of luck to you 🙂

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, Stage IV, metastasized to brain Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 6, 2018 07:25PM KarPC wrote:

Hi SuperDave69. There does need to be more awareness of male breast cancer and for stage 4 bc in general. Even for a woman, its a lonely disease. There is great support out there for the early stages. Few people understand the difference between the early stages and stage 4. I personally don't know anyone with stage 4 bc. That's why I read the forums here. Everyone is welcoming, supportive and informative.

I am also 48 and I work full-time. I am tolerating Ibrance fairly well, but feel heavy fatigue at the end of my days. Back in 2016, I had treatment for early stage bc. Sure, I mourned not feeling as feminine after my mastectomy and struggled with hair loss. Now that I have mets, my concerns are about living as long as possible, my quality of life, being there for my family and friends, hoping I respond to treatments, hoping my side effects don't become too severe and hoping new drugs come out that will extend my life. I hope to see you more on these forums (Ibrance, bone, lung mets..). You are one of us. We are a diverse group with different backgrounds, ages and cancer experiences and your contributions are important for all of us.

Thanks for reminding us that men get breast cancer too, and that there is not enough awareness or support out there for stage 4 breast cancer.

~Kar

​Diagnosed with 1 small liver met (9mm) 2/2018. Received liver ablation 3/2018. ~Kar Dx 4/2016, IDC, Both breasts, 2cm, Stage IIA, Grade 3, 0/14 nodes, ER+/PR-, HER2- Surgery 5/17/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Chemotherapy 6/10/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 10/1/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2/8/2018, IDC, <1cm, Stage IV, metastasized to liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 2/17/2018 Femara (letrozole), Zoladex (goserelin) Targeted Therapy 2/17/2018 Ibrance (palbociclib)
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Jun 6, 2018 07:41PM Superdave69 wrote:

Hi KarPC!

Thank you so much for your response! You said it so well! I am having the exhaustion too towards the end of the cycle each month. Sometimes i just can't get out of bed.

You are spot on. I used to attend a bc group for anyone which was good, but when i finally went to the stage 4 group i noticed a huge difference! The goals and expectations are different so it seems more intense. I hope to talk to you more!

Dave

Stage IV with bone mets PR+/ER+/HER2+ diagnosed Jan 2017 Dx 1/15/2017, IDC, Right, 5cm, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2+ (FISH) Targeted Therapy 2/15/2017 Herceptin (trastuzumab) Hormonal Therapy 2/15/2017 Arimidex (anastrozole) Targeted Therapy 5/30/2017 Herceptin (trastuzumab) Targeted Therapy 5/30/2017 Perjeta (pertuzumab) Chemotherapy 5/30/2017 Taxotere (docetaxel) Hormonal Therapy 3/1/2018 Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy
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Jun 6, 2018 08:39PM Spookiesmom wrote:

There is a man who is usually around, and active here, Traveltext. You can do a search for him. He’s in Australia and it’s winter there now, so maybe he’s just trying to stay warm.

Dx IDC, Stage IIIA, Grade 3
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Jun 30, 2018 06:09PM topdubu wrote:

Got tired of looking at the scars and did something about it. Allen

Dx 9/2003, DCIS, Right, 1cm, Stage 0, 0/1 nodes, ER+/PR+, HER2- Dx 9/2006, DCIS, Right, Stage 0, Grade 1, ER+/PR+, HER2- Dx 11/2016, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Chemotherapy Surgery Chemotherapy Surgery Mastectomy: Right
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Jun 30, 2018 06:45PM Snickersmom wrote:

Hi Dave,my brother was diagnosed with IDC and ended up having a mastectomy, radiation,and chemo. He was 67 at the time. He said he would never again make fun of hot flashes and night sweats that women suffer through, because he had them. He did join a support group but when he walked in the first day, itwas a roomful of women and they thought he was in the wrong place. He ended up continuing to go because they were so very supportive. He had genetics testing that showed he was negative for the BRAC genes.

I was diagnosed with ILC last spring and had a bilateral mastectomy. It was contained and didn't go into any of my nodes, so I didn't have radiation or chemo but I am on oral chemo for the next 5-7 years.

I wish we would make men more aware of this horrible disease. I suspect that there are many more out there who, for one reason or another, just don't do anything about possible symptoms.

I wish you all the best and hope the medication continues to work for you.

Dx 3/24/2017, ILC, Left, <1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 5/3/2017 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Hormonal Therapy 6/12/2017 Arimidex (anastrozole)
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Jun 30, 2018 06:46PM - edited Jun 30, 2018 06:47PM by Snickersmom

You rock, Topdubu!!

Dx 3/24/2017, ILC, Left, <1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 5/3/2017 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Hormonal Therapy 6/12/2017 Arimidex (anastrozole)
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Jun 30, 2018 08:31PM Runrcrb wrote:

SuperDave - what a great name. Sorry that you find yourself here but do know you are welcome. How are you doing?

Dx 6/27/2016, IDC, Right, 1cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Dx 6/27/2016, ILC/IDC, Right, 2cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Surgery 9/22/2016 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/9/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/23/2017 Arimidex (anastrozole), Aromasin (exemestane) Surgery 12/13/2017 Reconstruction (right): DIEP flap
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Jun 30, 2018 08:36PM MuddlingThrough wrote:

topdubu, wow! I admire your attitude and energy!


Diagnosed stage 4, de novo. It was quite a shock. Dx 1/4/2018, IDC, Stage IV, metastasized to bone/liver/other, ER+/PR+, HER2- Hormonal Therapy 3/28/2018 Femara (letrozole) Targeted Therapy 3/28/2018 Ibrance (palbociclib) Chemotherapy Taxol (paclitaxel)
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Jun 30, 2018 09:31PM Superdave69 wrote:

Thank you so much! to all! This is a wonderful group. for those that asked, I am doing so much better now that I have been off chemo for a while. I didn't realize how crappy I felt until I was off of it. I think more attention should be given to stage IV patients. Honestly I didn't know they were given less attention. Topdubu..cool tat! Since I was diagnosed at stage 4 I never had surgery but I still want a tattoo though! its on the bucket list near the top. 

For the stage 4 guys and gals...wow, your stories and your courage are inspirational to say the least! What I keep telling people is, it will get me some day, but not today! try to live life to the fullest no matter what stage or age. Try to pay it forward and forgive the people that have wronged you. It helps in the healing process. I can say it has helped get me through some rough patches. 

Thank you all again for your love and support. Keep those stories coming! I have been reading each and every comment. 

Stage IV with bone mets PR+/ER+/HER2+ diagnosed Jan 2017 Dx 1/15/2017, IDC, Right, 5cm, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2+ (FISH) Targeted Therapy 2/15/2017 Herceptin (trastuzumab) Hormonal Therapy 2/15/2017 Arimidex (anastrozole) Targeted Therapy 5/30/2017 Herceptin (trastuzumab) Targeted Therapy 5/30/2017 Perjeta (pertuzumab) Chemotherapy 5/30/2017 Taxotere (docetaxel) Hormonal Therapy 3/1/2018 Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy
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Jul 1, 2018 07:01AM - edited Jul 1, 2018 07:03AM by DivineMrsM

Hello Super guy . Just came across yout thread here. Prior to dx, I was mildly aware that men could get bc because many years ago, my husband felt something in his breast area and was sent for a mammo, which turned out to be nothing apparently. I must tell you, we sat in the waiting room with others, a few men with their wives, and when dh's name was called, the other men reacted as if they were offended. Naturally they assumed I was the patient, and they got a rude awakening that they didn't want!

I definitely know that even this website is mostly geared towards women's issues. I do feel we are receptive to the men who come here looking for support and are willing to offer whatever insight and information we can share. I also hope you can glean some useful things from our womanly conversations about living with mbc, not dying from it. You have my best wishes for longevity and quality of life and good response to treatment.

topdub, great tattoo!

found lump 12/22/10~er+/pr+/her2- stage iv bone mets~chemo~lumpectomy~radiation~arimidex~ "The world breaks everyone and afterward many are strong at the broken places."
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Jul 1, 2018 08:46AM Tresjoli2 wrote:

I have been exploring this topic with my MO because I was relatively young and my cancer was triple positive too, and I have an 11yo son. funny... the MO could clearly explain what will happen to my now 6yo daughter. Her mammos will start at 30, ten years before my diagnosis age. She will also get ultrasounds and be watched. My son? Well no one can tell me what to do or how to monitor him...thanks for sharing your story super....

Diagnosed at age 40 after going for my baseline mammogram. Dx 4/21/2015, IDC, Left, <1cm, Stage IA, 0/2 nodes, ER+/PR+, HER2+ (FISH) Dx 4/21/2015, DCIS, Left, 4cm, Stage 0, Grade 3 Surgery 5/18/2015 Lumpectomy: Left; Lymph node removal: Sentinel Targeted Therapy 6/19/2015 Herceptin (trastuzumab) Chemotherapy 6/19/2015 Taxol (paclitaxel) Chemotherapy 8/7/2015 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 9/24/2015 Whole-breast: Breast Hormonal Therapy 10/11/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 8, 2018 12:36PM topdubu wrote:

Hi Dave, The tat was liberating--I can now run without a shirt! I highly recommend it but take a dog chew--there is some pain. That took took 20 hours over 6 sessions--you have to mean it and have a top-notch artist.

Speaking of pain, does anyone have any thoughts of joint pain from letrozole? It is primarily in my hands but may be progressing. I've been on it for 17 months.

Dx 9/2003, DCIS, Right, 1cm, Stage 0, 0/1 nodes, ER+/PR+, HER2- Dx 9/2006, DCIS, Right, Stage 0, Grade 1, ER+/PR+, HER2- Dx 11/2016, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Chemotherapy Surgery Chemotherapy Surgery Mastectomy: Right
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Jul 8, 2018 02:36PM Grannax2 wrote:

I have been aware and concerned about male BC because MBC has been a killer in my family since 1972. My children have a super high risk even though our mutation has yet to be isolated. My daughter, 46, gets excellent care. My son, 44, nothing. That's wrong on so many levels. Just because we don't carry BRCA 1 or 2 shouldn't exclude my family history. In fact when I tested negative for BRCA, I was told that I was at the same risk as the general public!!! Wrong, so wrong. My son is very aware of his risk and he's a doctor, so I think he would never ignore any symptoms or lumps.

Also, I worked at the Komen Breast Center for awhile. We did get male patients and I tried to be very aware of how awkward they felt. I always put them in a room, not a cubicle with the ladies!

I hope we hear more from you.

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Jul 8, 2018 02:58PM - edited Jul 8, 2018 03:00PM by Daniel86

topdubu, regarding the joint pain from letrozole, my wife has been taking glucosamine and chondroitin since the beginning and that seem to have helped a lot. It took about a month to kick in but so far so good. I know several other ladies have had positive results with the combo.

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Jul 8, 2018 03:58PM topdubu wrote:

Thanks, I'll check this out--probably ok but have to check for potential conflicts with current coctail.

Dx 9/2003, DCIS, Right, 1cm, Stage 0, 0/1 nodes, ER+/PR+, HER2- Dx 9/2006, DCIS, Right, Stage 0, Grade 1, ER+/PR+, HER2- Dx 11/2016, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Chemotherapy Surgery Chemotherapy Surgery Mastectomy: Right
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Aug 3, 2018 11:04PM topdubu wrote:

I have now tried glucosamine and chondroitin, unfortunately I have noticed no difference. I have just traveled to Mongolia and because of compressing time zones, I ended up with about 3 doses of the Letrozole in 2 days. This is a really bad idea--normally the stiffness and pain is merely annoyong--this was severe. I was scrambling for my Advil which was burred deep in my bags. I was almost frantic to find a chemist in Irkutsk, Russia and get my message across on what I needed. It took a full day and skipping a dose to get back to normal.

Dx 9/2003, DCIS, Right, 1cm, Stage 0, 0/1 nodes, ER+/PR+, HER2- Dx 9/2006, DCIS, Right, Stage 0, Grade 1, ER+/PR+, HER2- Dx 11/2016, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Chemotherapy Surgery Chemotherapy Surgery Mastectomy: Right
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Aug 4, 2018 01:54AM WC3 wrote:

Superdave69:

I'm female but I've got another condition which is thought to predominantly affect males that I often have to educate people about, another condition which is 1 in 100,000 and I have spent much of my life in predominantly male environments and I just wanted to say that I too know how it feels to be a minority and I agree that people need to be more aware that men can also get breast cancer. "Men's Health" had a "check your pecs" article about 10 years ago but it should be more common knowledge even if it is rare because it's easy to do a breast exam. I would actually like to see more of an emphasis on men's health, both physical and mental health in our society in general.

I would also like to thank you for acknowledging the hardships women face with respect to breast cancer but I would like to say I don't think the hardships men face are any less than those of women, just a little different. I think that when you first hear you have cancer or are in a fight for your life, it's a sh***y situation for anyone to be in.

Anyway I will help spread the word about male breast cancer.

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 5/31/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/14/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Aug 11, 2018 01:45PM - edited Aug 11, 2018 01:46PM by topdubu

Got a little help from a new friend in western Mongolia last week. These golden eagles are used to kill predators that raid the livestock of the local nomadic herders. I think she liked my tat.


Dx 9/2003, DCIS, Right, 1cm, Stage 0, 0/1 nodes, ER+/PR+, HER2- Dx 9/2006, DCIS, Right, Stage 0, Grade 1, ER+/PR+, HER2- Dx 11/2016, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Chemotherapy Surgery Chemotherapy Surgery Mastectomy: Right
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Aug 11, 2018 01:49PM MuddlingThrough wrote:

Wow, topdubu, everything about that photo is amazing!

Diagnosed stage 4, de novo. It was quite a shock. Dx 1/4/2018, IDC, Stage IV, metastasized to bone/liver/other, ER+/PR+, HER2- Hormonal Therapy 3/28/2018 Femara (letrozole) Targeted Therapy 3/28/2018 Ibrance (palbociclib) Chemotherapy Taxol (paclitaxel)
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Aug 11, 2018 03:43PM LovefromPhilly wrote:

wow Topdubu! Amazing photo and amazing experience! Did you drink any yak milk while there?

Regarding joint pain and letrozole- yes, definitely a thing. I have been on it for about 17 months now and after about 3 or 4 months started developing major joint pain in right thumb to the point I can no longer use thumb for much of anything (and I’m an acupuncturist and massage therapist so this stinks!).

I think that the joints that are more prominently used have the highest risk for becoming arthritic. I believe it has something to do with the lack of estrogen in the joints/connective tissues. Estrogen is “plumping, moisturizing and nourishing” to our tissues and without it, the joints, which are so often moving, become inflamed hot and irritated.

Hope this helps! Glad you were able to find Advil and medical advice in Russia!

When I travel, I always make a travel/medication plan with my MO team. Maybe something to check into for next time so you don’t find yourself in the same discomfort!

SuperDave69: thank you so much for sharing your post! I honestly never knew about male BC until about 2 years ago and I focused my studies on oncology in grad school! I’m so sorry there is not more info and advocacy. I will definitely be spreading this information. I may write about it on my next website blogpost if any men with BC would like to contribute - please send me a pm

With Love From Philly Dx 3/25/2017, IDC, Right, 6cm+, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- (IHC) Hormonal Therapy 4/4/2017 Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Aug 12, 2018 06:38PM - edited Aug 27, 2018 02:13PM by topdubu

We saw no yaks in this immediate territory. We did have camels to haul gear. As far as drinks go, fermented mare's milk was about the most exotic. Not great but not near as bad as I had been told. I was solo on the Russia spur of this trip--so on my own. Just a few days so I had a small bag with most of my stuff back in Ulaanbaatar. Thanks for the heads-up on the estrogen effect of joint pain. Mine is being suppressed to near zero. There seems to be cumulative effect--now 19 months of this. I was told early on that we'd do this therapy so long as it worked--someone on this site suggested that you will do it so long as you can stand the side effects. Hmm.

Dx 9/2003, DCIS, Right, 1cm, Stage 0, 0/1 nodes, ER+/PR+, HER2- Dx 9/2006, DCIS, Right, Stage 0, Grade 1, ER+/PR+, HER2- Dx 11/2016, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Chemotherapy Surgery Chemotherapy Surgery Mastectomy: Right

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