Husband just diagnosed

13

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  • Haljen
    Haljen Member Posts: 45
    edited June 2011

    Glad to hear he made it well through surgery and is recovering. I've been thinking of you all week and my heart goes out to you. Any questions you have send them on over. I hope YOU are doing well. One day, one hour, one symptom at a time. Our husbands WILL get through this! (((((HUGS)))))

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  • HansieDZ
    HansieDZ Member Posts: 115
    edited July 2011

    Here we are 15 days post-masectomy and a trip today to the surgeon to have one of his two drains removed (the one from his lymph nodes is still putting out too much to be removed). He has some "irritation" around the drain sites so he's on an oral antibiotic.

     The surgeon presented his case before the tumor review board at the IU Med Center yesterday and the recommendation was for 30 treatments of radiation following chemotherapy which was a bit of a blow to us :(.  

    We got a full path report and he is diagnosed at Stage IIIB due to involvement of the lymph nodes and skin. Grade 2 although the surgeon was hesitant to classify this as she said it was fairly subjective.

    23 lymph nodes removed,with 3 being positive. The tumor was 2.4 cm. There were clean margins.

    The T is 4b the N is 1a and the M is 0 (can you tell I am reading off the path report?!).

    The surgeon was encouraging and positive with the prognosis but we can't help feeling discouraged at what all has to be faced yet.  We imagine he'll be getting a PET scan and starting chemo within the next 2-4 weeks.

     Thanks everyone,for your continued interest,support and prayers. It means so much for me to have this wonderful place to come to share and be encouraged by. 

    :)Jennifer

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  • 37antiques
    37antiques Member Posts: 643
    edited July 2011

    Hi Jennifer,

    Glad he his healing well and is well cared for.  Chemo is doable, rads are easier.  There are a lot of great suggestions on food here during the chemo, it tends to change your taste buds.  I liked watermelon and could only drink grape soda or juice, popsicles are nice.  A lot of other women liked carbs and mashed potatoes.  If I could offer one piece of sound advice, don't let him eat his favorite food, he probably will never like it again!

    One thing at a time.  Keep us posted!

    ((Hugs))

    Sue

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  • steelrose
    steelrose Member Posts: 3,798
    edited July 2011

    Hi again Jennifer...

    I hope your husband is recovering well. I know that the chemo and radiation is daunting, but it sounds like the doctors are being very thorough and it will give him the best shot at no recurrence!Smile Every chemo has it's own special side effects, so I hope whatever is used is both tolerable and effective. The radiation just made me very tired... I would expect your husband to have decreased energy as well. I wonder if you connected with Haljen? I think her husband is going through chemo now, so she might be of some help to you. It's always nice to know we're not alone! Please continue to update, and I send both you and your husband my very best...

    Rose. 

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  • Haljen
    Haljen Member Posts: 45
    edited July 2011

    I know this is all so overwhelming. Once that second drain is removed he will really begin to feel better every day. I recommend keeping up on the suggested exercises from the surgeon once the final drain is removed. If you need info on exercises, I can email you the exercise sheet the doc gave hal. Hal did have irritation at the drain site, but the surgeon did say it was normal. He was on antibiotics for an infection around the main incision sight.



    I am sure the docs are recommending what treatments are best for his diagnosis. Hal is going through chemo now and will be taking tomaxafin for 5 years. But no mention of rads for his treatment. Hals first round of chemo was a bit crazy with side effects, but the second round went much much smoother. Two down and two to go.



    Hal didn't have a PET scan before starting chemo. He had a blood test to see his tumor markers and had an Oncotype test done on the sample from the tumor saved by the hospital. This Oncotype test will see what the reoccurrence rate may be. Did your husband have the BRCA test done?



    Please, ANY questions, don't hesitate to ask!

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  • Malcolm
    Malcolm Member Posts: 1
    edited July 2011

    My husband was diagnosed with stage 3 BC three years ago. We got over the Stigma that his was a woman's disease by doing research and finding many men have BC. He had surgery, no,lymph involvement, chemo and radiation. he has been taking tomoxifan and his prognosis was excellent. last month he had some pain. We are in shock that he has muscle invasive bladder cancer with a probably spread to the pelvic bone which means it is stage 4. Everyone needs to be their own advocate when your tests come back, There was trace amount of blood in his urine last September which three doctors missed. This spread might have been caught early. We really do not feel we have any hope. Has anyone gone through this set back and is there any hope?

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  • OneWhoCares
    OneWhoCares Member Posts: 2
    edited July 2011

    Greeting all!  My husband was diagnosed with MBC on March 1, 2011.  Mastectomy/Sentinel biopsy on 3/7.  Every test one can imagine.  Result:  T2 N1 M0 (1 of 2 nodes active cells). Oncotype score in the 30's.  Negative BRCA 1/2.  Started Chemo 4/13 (Taxotere/Cytoxen). Rough & tumbling journey.  6th & final Chemo was Wed. 7/27.  WooHoo! Just found this wonderful forum today.  Look forward to communicating with all of you!  No radiation required due to tumor size of 2.3cm.  Tamoxifen for 5 yrs.  Start date, unknown....but soon.  Looking for alternatives to that course of hormone therapy.  Any thoughts.  Love, Hugs & kindest of thought to all here!  A wonderful resource I've found is for MBC only:  https://malebreastcancer.org/Home_Page.php  Had the pleasure of personally with the founder, Nancy Nick today.  I have grand plans to get extremely active in the world of education/support/speaking on behalf of this extremely important men's health issue.  Would welcome anyone wishing to network:  badger.randy@gmail.com  (yes...my name if Randy, I am female)

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  • Larry44
    Larry44 Member Posts: 53
    edited July 2011

    Randy,

    My medical oncologist told me that the top experts in the field do not know if the alternatives to tamoxifen, the aromatase inhibitors, would be effective in men. There have been no tests of aromatase inhibitors in men done and it is very unlikely that tests will ever be done because so few men get breast cancer. I took tamoxifen for 5 years. I had some side effects, mainly night sweats, but the side effects were not severe enough for me to stop the drug. Even if you could get a doctor to prescribe one, it is very unlikely that your insurance, assuming that you are in the USA, would pay for them since the aromatase inhibitors are not approved for use in men.

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  • OneWhoCares
    OneWhoCares Member Posts: 2
    edited August 2011

    Thanks for your reply, Larry44!  Not surprised that no tests have been done on aromatase inhibitors for men.  Learned a bit about Arimidex/Aromasin/Fareston thru my research this weekend.  Yes, we are in the US...Oklahoma. My husband is our surgeon's 3rd MBC patient in 35 years.  Goes to show you.  Happy to hear your side effects were not severe while on Tamoxifen. Although the #'s of MBC cases are low, I feel strongly that we should all work together for more research/stats/data, et. al. We can't donate lots, but intend to send $100 soon to the JW Nick Foundation (malebreastcancer.org).  Highly encourage all to explore this wonderful MBC specific website. Looks like your Dagnosis was very similar to my Hub's.  All my best.  Look forward to your future posts. Thank you, again!! 

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  • steelrose
    steelrose Member Posts: 3,798
    edited August 2011

    Randy...

    I'm glad you're getting involved and speaking out about MBC. My father died from the disease in 1997, after a five year battle. He was on Tamoxifen too, which stabilized him for a long while with minimal side effects. I hope your husband gets great results! I haven't had the BRCA test but I'm suspicious about my BC being related to my Dad's... more studies should be done about males passing on these genes. I'm just so happy that everyone is becoming more aware... this will save lives!!! No one was talking about MBC in '97!

    Jennifer...

    We haven't heard from you in a long while. I hope that your husband is fully recovered from surgery and is tolerating the treatment. Keeping you in my thoughts and prayers, as always...

    Rose.

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  • HansieDZ
    HansieDZ Member Posts: 115
    edited August 2011

    Hi Rose! Thanks for checking on us :)

    I see we have a couple new ladies on here (Malcolm and Randy)- welcome!. I hope Hal and Jen are doing as well as they can.

    Real Life keeps us busy (with 6 kids,there's always SOMEthing) but I wanted to update.

    Matt goes in for a PET scan tomorrow and starts chemo Thursday morning. He'll get 4 cycles of Taxotere and Cytoxen every 3 weeks then take a break for 3 weeks then 6 weeks of radiation. Then of course,the Tamoxefen for 5 years. It does seem like a lot to go through,but we have to take it one step at a time.

    Blessings and prayers for health!

    :)Jennifer

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  • Haljen
    Haljen Member Posts: 45
    edited August 2011

    Hal is hanging in there. The 10th is his last treatment. He also had the Taxotere/Cytoxen. If you have any questions let me know. There are some great threads here to see how to deal with side effects. Everyone is different. The best thing is to log SE's in a book each day and learn how to combat them for the next round. Thinking of you all!!!

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  • steelrose
    steelrose Member Posts: 3,798
    edited August 2011

    Jennifer and Jen...

    Happy to read your updates and it sounds like everyone is moving forward... one day at a time... with the hope for much better days ahead! 

    Love to you both,  and to Matt, Hal, and all...

    Rose. 

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  • HansieDZ
    HansieDZ Member Posts: 115
    edited August 2011

    We received bad news today.

    The cancer has spread to his bones (3 on the spine,one on the pelvis). Stage IV.

    Incurable. I am devastated. Thanks for your prayers everyone.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2011

    I just came upon this thread the other day because I was intrigued about the subject of male breast cancer. I hadn't even realized that men had milk ducts...or could have ER+ tumors.

    So I was so sorry to see your post today about your husband now being Stage 4. :(  From what I've read bone metastisis can be quite managable and has a much better outcome.  Hugs to you and your husband.

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  • Haljen
    Haljen Member Posts: 45
    edited August 2011

    OMG Jennifer, I am so sorry to hear. My stomach is on knots. My thoughts are with you an the rest of your family. ((((((hugs)))))

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  • steelrose
    steelrose Member Posts: 3,798
    edited August 2011

    Thinking of you and Matt every day, Jennifer. Stay strong, and feel free to contact me at any time!

    With love,

    Rose.

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited August 2011

    I'm sorry his cancer spread.  He's welcome on the stage IV board to post with us.

    I am looking for a male who can write, who is willing to write a piece about what it's like to have male breast cancer for my blog.  Contact me via PM if anybody here wants to do it.

    I can't pay for anything but i do get 30,000 hits a month so people will read it, if you want to share your story,  Thanks. 

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  • thatsvanity
    thatsvanity Member Posts: 391
    edited September 2011

    My genetics doctor was trying to get a clear picture of my family history of breast cancer. I was always told that my mom's brother, my uncle, died of pancreatic cancer, but he died of breast cancer. I was not told this information probably for the same reasons your husband doesn't want to share his diagnosis. My genetics doctor said that I carried an unidentified genetic inheritance for breast cancer because of my male uncle who had the disease, at least share the information with close family members--- it may save their lives.



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  • thatsvanity
    thatsvanity Member Posts: 391
    edited September 2011

    Stigmas of any disease perpetuate fear which results in unessary deaths.

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  • writerchick
    writerchick Member Posts: 19
    edited September 2011

    Go to amazon.com, and google Jack Willis. He is a journalist and wrote a book about having breast cancer about three years ago. I've known him for years. He wrote the book with his doctor.

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  • HansieDZ
    HansieDZ Member Posts: 115
    edited October 2011

    Thank you for reading my thread.

    My husband is totally fine with saying he has breast cancer now.Not that he's out there wearing pink ribbons and such,but he isn't "ashamed" any more. Having cancer humbles a person.

    Unfortunately,he is now Stage IV with mets to the spine and pelvis.He's been on Arimidex and Xgeva since 8/4 and will have his next PET scan on 10/17 to see if this treatment is working for him. He will also get tested for BRCA 1&2 at that time.

    Best of luck to you on your journey.

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  • HansieDZ
    HansieDZ Member Posts: 115
    edited October 2011

    Update:

    Matt had his first PET scan since his Stage IV diagnosis on Monday the 17th.

    We got the results yesterday(19th) and are happy to report that his current treatment of Arimidex (plus monthly Xgeva shots) is workiing! Reduction in his skeletal mets and no new occurances!

    We are relieved,thankful and appreciative.

    Keep hanging in there everybody!

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  • ppplocke
    ppplocke Member Posts: 44
    edited October 2011

    Fabulous news. I just came across this thread. Please know I'm thinking of y'all and so happy for your PET report.

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  • o2bhealthy
    o2bhealthy Member Posts: 2,101
    edited October 2011

    Exellent news HansieDZ!!!

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  • EricV
    EricV Member Posts: 64
    edited October 2011

    Thats great! Keep itgoing!

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  • Haljen
    Haljen Member Posts: 45
    edited October 2011

    Great news Jennifer!! You and your family are always in my thoughts! Hugs to you!!!

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  • chele
    chele Member Posts: 1,465
    edited October 2011

    That is great news!

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  • Patriotic
    Patriotic Member Posts: 281
    edited October 2011

    Awesome. So happy for you!!

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  • HansieDZ
    HansieDZ Member Posts: 115
    edited March 2012

    Updating

    I don't revisit my thread very often, spending most of my time on the Stage IV board, but I wanted to update everyone that Matt's latest PET scan showed progression to more vertebrae,left pelvis and rib. After 6 months on Arimidex (and a good scan in Oct), he just started on Tamoxifen yesterday and is still getting monthly Xgeva shots.

    He tested positive for BRCA2 and we will visit a geneticist in Indy on March 22.

    Praying for all here on this forum and those you love and support you.

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