Breast Cancer & Follicular Lymphoma

Discussion in 'General Health & Wellness' started by efaragon, May 20, 2003.

  1. efaragon

    efaragon New Member

    Anyone out there been subsequently diagnosed with either of these. I was diagnosed with CFIDS in 1989, have run the gammit of symptoms +EBV and fibromyalgia.
  2. efaragon

    efaragon New Member

    CFS or CFIDS if Chronic Fatigue Immune Dysfunction Syndrome or Chronic Fatigue Syndrome and EBV is Ebstein Barr Virus. It was thought to be the catalyst that started the CFS for me, but I think I have had a damaged immyne system since early childhood.

    What are you doing for the Lymphoma?

    Eileen
  3. efaragon

    efaragon New Member

    That is almost exactly my story. I have refused the abdominal surgery to see what type it is. 3 years ago it was caught on a CT scan when I was hospitalized for what they thought was diverticulitis. I don't think that I had that. My WBC was 30K. They gave me antibiotics and apparently my type responds well to antibiotics and I am sure it has kept it at bay for years quite by accident.

    What type is yours?

    Eileen
  4. efaragon

    efaragon New Member

    Some follicular lymphomas respond well to antibiotics as far as getting the white blood cell count or lymphocytes down. It does not cure it nor is it a viable treatment. It just keeps it at bay so that it takes longer to be discovered. My enlarged nodes were discovered when I was hospitalized three years ago for what the doctors thought was diverticulitis and my WBC was 30k. I almost died until they gave me the antibiotics. They were ready to do exploritory abdominal surgery if necessary. After I responded to the antibiotics I had a CT that revealed the enlarged inguinal nodes. We did a needle aspiration of one of the nodes and sent it to Stanford. It came back some normal lymph tissue and some undetermined tissue. Stanford recommended excision. I was all set to have the surgery to remove the nodes and when I met with the surgeon and he told me they also wanted to resection my colon and I would be cut from stem to stern to go after the nodes I balked. I did not feel that there was enough evidence of anything at that time to warrant major abdominal surgery, plus when I told my then supervisor she laid me off. I was quickly transfered to another department because what she did was sort of illegal!!!! I was starting a new job and both my primary doc and I thought we should just watch the growth rate by having a CT at least every 6 months. There has been minimal growth in three years. One node is 4.7 cm the other is over 3 cm.

    I was also diagnosed last September with breast cancer and had a mastectomy, level I and II lymph nodes removed, a tram flap reconstructive surgery where they take the Transverse Rectus muscle and bring it up with the tummy skin and fat to fashion a new breast. If you get a chance look it up, it is quite a procedure. It requires that they do a tummy tuck at the same time. So I look like Frankenstein's bride. Unfortunately they would not go after the nodes at that time because it is in the gut area.

    When I had the breast lump biopsied the surgeon took two nodes in the groin to biopsy as well. They were granuloma or sarcoidal in appearance but came back as normal lymph tissue.

    The two enlarged nodes are deep in the pelvic area and hard to get at. It would require major abdominal surgery. The treatment protocols for follicular lymphomas are the same. The last PET (two weeks ago) showed significant cellular uptake in the pelvic area but compared to the PET last September there was less uptake. (possibly because there are two less nodes)

    I had some real healing issues after my breat surgery. I had wound that I packed for months until they healed. I have also had other previous surgeries such as hysterectomy over 10 years ago, ovaries removed as a separate surgery 5 years ago, Gall Bladder removal 6 years ago, tonsillectomy over ten years ago.

    So...you see I am not looking forward to another surgery of any kind. The Oncologist will not treat me until I have other markers. So far it is confined below the diaphragm. But I suspect that the pains that I experienced when I was hospitalized 3 years ago were from the spleen and that my back pains are related and the constant discomfort in the abdominal area is related to what ever is going on with those nodes.

    I am so afraid I will not make the right decisions in a timely manner. My chest x-rays are clear, my bone scan was clean. I am a mytery for them at the moment. I also do not have any monoclonal blood markers.

    Thank you for letting me know what type you have. I have suspected that type or the t-cell type. Mine is pretty indolent as well. I would guess that I have had it for over ten years which is when I started to go south health wise.

    Eileen