Sharon - adenoid cystic carcinoma (AdCC): I am the youngest of the three of us, the one who has had a rare disease the longest, and a lady: so I will go first. In 1993, I could feel pain in my right breast. I called my breast doctor and was told that pain was not a sign of cancer. When I went in for my mammo in 1994 I pointed the painful spot out to her and she did a wire guided FNA (fine need aspirate). This is also referred to as a need core or a needle biopsy. It came back negative. This happened for the next for year, but I was too busy being a caretaker to worry. On each mammo date, my doctor would take another needle core. The lump kept growing and the pain was still there. My husband passed away in 1995 at a young age. My son got married in 1997. Life was busy, sad, and complicated enough.
In 1998, I told my breast specialist that I wanted the benign lump removed. It was causing constant pain. She took my mammo that year, and she and I both saw the bad omen on them. My lump had grown arms and legs - not a good sign, but she still believed it was benign. I had surgery to remove the lump in September 1998. I had it under a local and the doctor told me when he removed it that he definitely thought it was benign also. Well, obviously I wouldn't be a cancer advocate if it was. It was AdCC and it required more surgery. I chose to keep my breast. I had 2 lumpectomies, a partial mastectomy, a lymph node dissection during the next month. My margins were still 'questionable' after the surgeries, so my oncologist suggested that I follow it up with high dose radiation. I did 37 radiation treatments and refused to do chemo. I had plastic surgery to even the breast out in size. I did all of my treatments alone, with no assistance. At that time, I lived 2000 miles away from my family.
I was tired, lost a great deal of weight, and had a terrible 'sun burn' on my breast, but I got through it all. I chose not to do chemotherapy because I could not find any medical literature that supported a particular chemo for this type of BC (breast cancer). Yes, by this time my daughter-in-law, who lost her Mom to cancer the previous year, 'showed me the ropes' in online research. Shortly after I was online, I joined a group for my cancer. The rest is an open book. I have been active in the online rare cancer community since that time.
I had another medical emergency this last year that caused me to travel 2000 miles to have surgery. I have stayed in the area because the recovery was expected to be a long one. Because of this, I have seen several new doctors and I am amazed at the conflicting 'authoritative' opinions I have gotten on my cancer. Several seem to be at totally opposite ends of the spectrum. But, I don't get too concerned. I just ask the doctor to give me the medical literature that backs up his opinion. I have yet to receive that. In 1995, there were 33 women in the US diagnosed with my cancer (for the 30 states who reported). And I am sure they were not all written up in medical journals. I cannot fault the doctors for having a lack of knowledge and experience, but I can fault the doctors who try to act like they have had vast experience. And I am blessed because I found a support group early on that taught me to question the doctors.
John - chronic lymphocytic leukemia (CLL): For several years I had a hardening in the palm of my hand and two of my fingers started to curl up a little. I didn't have any pain so I let it go. After it got to where it affected my golf grip I had to do something about it. That was in January of 2001 ( the off season for golf). I went to see a specialist on hand surgery and was diagnosed with Dupuytrens Contracture, a condition where the cords of your palm separate from the skin and then contract, pulling your fingers up. It can only be corrected by surgery.
In order to have the necessary surgery I went to my regular doctor for a pre-op check-up. It was at that time that he noticed that I had an elevated WBC (white blood cell) count. It was 17,000, where normal should be between 4,000 and 14,500 (approximately). He then referred me to a blood specialist who did further testing. I had the tests repeated at 3 month intervals and each time the WBC was elevated, as were the lymphocytes. In CLL (chronic lymphocytic leukemia) the lymphocytes are not fully developed and therefore do not function properly. That was my diagnosis.
Since I am a Phase 0 patient (there are 6 phases), no treatment is necessary at this time; and may never be required. I get a blood check-up every six months, with the next one scheduled for next week, January 22nd. I will let you know the results of those tests.
Post Script 2003 - John has recently been diagnosed with a basal cell carcinoma requiring a MOH's surgery. If you would like to see 'after' pics of this procedure, use the Contact link on this page. John's counts have increased and he will be undergoing a bone marrow biopsy in May.
Jerry - Essential Thrombocythemia, a myeloproliferative disorder: One of my all-time favorite newspaper columnists was Rusty Weston on the NY Times. He went "away" (as the Irish put it) a few years ago but left us with his contention that his sole objective in reporting was to affect the inflicted and inflict the affected. That said, the data pertinent to my affliction is somewhat hazy concerning the date of diagnosis because I have an old country doctor who went several years scratching his head over my increasingly elevated platelet count. Believing it to be "lab error" until the count soared over 900K, he thought it advisable for me to see a hematologist in Aug. 2002. Once the hemo/onco guy saw the numbers he ordered another blood test and when it came back in the lofty neighborhood of 1,200,000 he did a bone marrow biopsy in early Sep. 02 and concluded from its results that I was thrombocythemia positive in a big way. I was given an Rx for hydroxyurea, an all-purpose chemo med that he hoped would stop the increase and maybe even bring my platelet count back down.
After increasing the dosage of the hydroxyurea from 500mg a day at the start to 1500mg a day beginning 12/1/02, the latest blood test (taken 12/29/02) showed the platelet count down to 499K. Since 200K to 400K is considered the normal range, he (and I!) consider this a rather significant achievement. I am still on 1500mg per day and will get the next blood test on 1/29/03. Hopefully the platelet count will be at or less than the last count. If it goes into the "normal range" I suspect he will begin a trial reduction in dosage to see what my maintenance level is. I'll never get off the med, but it has had no ill affects on me so I think I can keep on going on it as long as I keep on going. To refresh you memory, thrombocythemia in classified as a myeloproliferative disease, one of those rarities that some folks (especially insurance companies) choose to call cancer.
Post Script 02/04 - Jerry's platelet counts have risen considerably. Medicine modifications have not improved his situation.