• ina's Avatar

    What should I expect in the recovery and overall life changes

    Asked by ina on Thursday, February 28, 2013

    What should I expect in the recovery and overall life changes

    right now I am just numb,I also have Lupus and it concerns me with overall well being of cancer treatment,is there anyone with both Lupus and Cancer?

    3 Answers from the Community

    • carm's Avatar
      carm

      Ina,
      It might suprise you to know that there is a strong correlation between vulvar cancer and SLE. I have attached a link. I am an oncology nurse who specializes in gyne cancers. Even with Lupus, vulvar cancer usually has a good outcome. I am sure your doc has told you that she will do scheduled exams to look for any suspicious lesions on the vulva and within the vaginal vault post vulvectomy. That is what you will have to look forward to, any necessary biopsys should anything look suspicious. There is no reason to think that you cannot go forward to resume a normal life. I wish you the best, the worst part is over and I am always around should you need anything, Carm RN.

      http://www.medscape.com/viewarticle/758478_7

      almost 4 years ago
    • AlizaMLS's Avatar
      AlizaMLS

      Dear Ina,

      I saw your post and though we have different kinds of cancer, the answer to your question is yes, I have Lupus too!! (SLE) I have mild SLE usually - am usually the well poster child for it, have in 20 years only been on pred for maybe a week. I take placquenil 400 mg. daily and that's it. I have BC, Stage I (found early) and could have had a lumpectomy, but since that would have been followed by 5-6 weeks of daily radiation (I met with the Radiation Oncologist at Sloan Kettering who spoke with my Rheumatologist and got an ok from her), but I was worried about the chance of a flare or deformity of my breast that would require plastic surgery anyway, so I had a mastectomy. My oncotype (genetic test) indicated that chemo offers me no advantage (good thing). I'm on adjuvant endocrine (hormonal) therapy with Tamoxifen.

      I think it's very difficult to predict how cancer will affect a particular individual, much less if chemo or radiation is required, much less if Lupus is involved. The best advice I can offer you as a fellow Lupus sufferer is to make certain you have an excellent Rheumatologist and that this person is most amenable to speaking with your Oncologist and or Radiation Oncologist. See a nutritionist to make sure you're taking the right vitamins. My Lupus caused a fluke for me and I need to inject myself with B-12 weekly because I can't absorb it from Vitamins or food (i'm fine giving myself injections; I had 8 years of allergy shots as a kid).

      I'm also a retired trained Medical Librarian. If you have any questions that I can answer for you or research for you, I'm happy to do so. I thought I was the only Lupus/Cancer person on the site (I found an MS/Cancer person [we can start a Cancer/Autoimmune Club...;)) I also help people find fun things -there's an online bookgroup called goodreads.com. You can keep track of all your reading, write reviews, join bookgroups in different genres, meet new people, and read reviews. I love it!

      My late aunt had vulvular cancer and she recovered just great. It took her a little while, but I saw her at my cousin's wedding and she looked beautiful (she'd come into NY from Ca. for the occasion). I'm thinkiing good thoughts for you.

      Warmest Wishes,
      AlizaMLS

      almost 4 years ago
    • AlizaMLS's Avatar
      AlizaMLS

      Dear Ina,

      One other thing I might suggest to you would be to join the LFA, the Lupus Foundation of America. They have chapters throughout the country and provide information re Rheumatologists, where forums are being held that you can attend, where support groups are, etc. Just another thought since you and I are "lucky" enough to be in both of these Clubs...;)

      Aliza

      almost 4 years ago

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