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Topic: Not sure what to think or feel...

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

Posted on: Dec 6, 2017 12:17PM

ELBII wrote:

I am a 55 yro male North American Mutt of Western European and Mediterranean descent. I am in the high risk catagory for breast cancer as i have 3 aunts who had it. One paternal, type unknown and two maternal. Both maternal aunts had the estrogen receptor type. One aunt survived 16 years before a different type took her in 6 months, working on finding out which type.

I am currently being treated for Karposi Sarcoma. I am genetically predisposed to it but it was also the basis for my Full Blown AIDS diagnosis in 1993. The KS was held at bay for years by the HIV cocktail I was taking until three and a half years ago. When I became a widower I quit taking all my meds and only started back on them about 3 monyhs ago.

Three months ago my PSA sky rocketed and a physical exam detected a hard spot on my prostate. Since I was homeless until early Nov this year I kept putting off the biopsy. Two and a half weeks ago i noticed my right breast had swollen and a painful lump had developed. The lunp was roughly quarter sized but not perfectly round. Pressure on the lump as well as lifting my arm would cause pain. The lump extended from under the areola toward the sternum. I sent my Immunologist an email and she said it was most likely Gynecomastia. She acts as my PCP, my health care is through VA.

Two days ago the lump started itching. When I scratched it a pus like yellow discharge occured from my nipple. At first i thought I had scratched a pimple so I squeezed my nipple. More yellowish pus came out followed by a white more solid mass. After that red blood.

I am waiting on a call to schedule the mamogram. At this point i am on the verge of freaking out. It is possible that my KS has metzed as it was untreated for about 6 months while i was homeless. I have no support group other than social workers and my service animal, an ESA feline. Part of me wants to just let whatever happens happen and try to enjoy the time I have til the pain starts. Not have the tests and just let nature take its course.

Like most of the last 25 years (I am a longterm survivor) my HIV is under control, my viral load is currently undetectable amd my tcell count is 774. I am dealing with PTSD and Severe Manic Bipolar Depression. Meds are helping but I don't know if I could handle cancer treatment by myself. My anxiety levels are shy high.

Biopsies for the KS and prostate are scheduled but the thought of metastatic prostate and BC scares the hell out of me. And since I am dealing with VA the time to get procedures is usually longer than civilians deal with.


Sorry to ramble but I need to know how others deal with the waiting and eventual diagnosis? I have no one to help me be strong at this pount.


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Dec 6, 2017 12:38PM MTwoman wrote:

ELBII, my heart goes out to you. Will you please consider getting a therapist through VA? Most of them are well trained in helping with PTSD, and how this diagnosis may affect your treatment. I think that a therapist would also encourage you to increase your support system - per your personal situation. I'm not sure if the VA has nurse navigators, but if they do you should ask if you can have access to one. Is the VA closest to you very large? That will impact the depth and breadth of services they have available there.

As a therapist, I have provided care through a VA contract. If you would like additional help privately, please PM me.

Heart

Dx 12/10/2002, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 12/19/2002 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 12/23/2003 Reconstruction (right): Nipple reconstruction Surgery Reconstruction (right): Saline implant Surgery Reconstruction (right): Tissue expander placement Surgery Mastectomy: Right
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Dec 6, 2017 03:04PM Peacetoallcuzweneedit wrote:

Hi ELBII -

I am so sorry you are experiencing all that you are going through with the anxiety- and that you feel alone. Please get the rest of the tests done, and don't give up! I am not sure which meds you are using for viral suppression, but there is some occurrence of gynomastia in men on HAART...I have had a few patients experience this that presented with much the same symptoms as you...I am not a doc - I am a clinical nutrition manager - we have a large HIV clinic and I have been providing medical nutrition therapy for over 10 years...

ELBII your HIV meds and your mental health are key to everything....and I know the VA can be slow and very difficult to maneuver, but look at all that you have survived..If you are being treated for the KS - not sure if your lesions are local on the skin or internal, but be confident about your treatment. Get the needed biopsies done..take a deep breath and stay in the game - as MTwoman stated about connecting with a nurse navigator, or a case worker to get you the one to one help...also do you attend any support groups?? Do you see someone for the prescription/management for bi-polar/depression meds?

Trust me waiting for tests and results is absolutely stressful. I do not see anything positive for our mental health surrounding the waiting period...it is HARD. You have an entire community of people on this site that would agree with that....we all get through it different ways - AND by doing much of what you did - posting about it...so ELBII please continue to take care of the things that you can - and do the footwork for the stuff you have to find out....


5/2017 Left Breast DCIS 5+cm Grade 3 6/2017 Right Breast IDC Stage 1A, Tmic 0.5mm, 100% ER+/100%PR+/ HER2- 6/2017 BMX, SNB left, Reconstruction completed 11/2017 Hysterectomy + ooph 11/2017
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Dec 7, 2017 04:43AM Traveltext wrote:

We're here for you ELBII. I'm a guy living with breast cancer and prostate cancer, so if you get a diagnosis for either of these I can help guide you through the medical processes involved with these diseases. Keep us posted.


Have breast & prostate cancer. NED both. More on Male BC

Dx 03/14, IBC, L. 2cm, S IIIB, G 2B, ER+/PR+, HER2- FEC x3, Taxol x3

Mx & 2/23 nodes 07/14

Rads x 33 09/14 and now on Tamox

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