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Aug 11, 2019 12:39AM
Aug 11, 2019 03:13AM
Shelligirl, I have read this forum since shortly after I was diagnosed and am thankful for all the information I gained, but I never wanted to make a post until I read your post, because your experience is so similar to mine. I felt it took me a year to get my bearings on my cancer, as I had absolutely no experience with the disease and the professionals I feel were less than forthcoming.
I'm sorry this is going to be long.
Similar to you, my diagnosis started in Ft Worth. I was MBC from the start because I had one 8mm nodule in my lung with an uptake and some other suspicious areas, but technically I was oligometastatic. I learned I had to educate myself. I learned my markers aren't good, the PR- and Ki67 of 40 being the trouble. Much later I found the stats indicated a probable life expectancy of 2-3 years from diagnosis and while no doctor ever discussed it I feel those probabilities manifested in their behavior.
I have been to the famous large institutions, the ones with portals, and to private practice oncologists. The cancer industry and professionals are not what I consider as service oriented. Long waits, short appts, call backs can be in days. Through the last two years my primary care doctor has been the only doctor who has shown any zeal in saving me, but he has to defer to the specialist, the oncologist. The cancer professionals have been less than forthcoming with information; for example I kept asking for bisphosphonates to save my bones from the hormone treatments, but they wouldn't give them to me, just a vague decline to my request. I looked into the side effects and with the right one there was little risk. My primary care doctor wanted me on them from the point of diagnosis. I kept asking oncologists for them because when combined with the right statin they prevent bone metastases. By the time I got to oncologist #4 I point blank said, "You won't let me have them because you don't think I'm going to live long enough for my bones to be an issue (from the hormone therapy)", and he said, "That's right." Well at that point I had already had bone deterioration and had lost 3/4 of an inch in my height after 8 months of treatment and was experiencing bone pain. Oncologist #5 gave me a prescription for them at our initial appointment.
Eleven months from diagnosis my third PET scan showed my lung nodule completely gone, not even scar tissue. There is too much minutiae with that nodule to bog down here, but I have to leave the purpose of it's existence in God's hands because that tiny little thing has determined everything about my treatment and life. Here is the cancer industry rub, that lung nodule wasn't expected to go away without chemo or radiotherapy, especially while my breast tumor stayed, thankfully stable.
I wanted a double masectomy from the beginning. I could have headed that way only if I agreed to neo adjuvant chemo. I said no because I found research that it could cause metastases. My idea was to stay oligometastatic though the cancer professionals had the attitude the MBC horse was out of the barn the fatal outcome inevitable. Then I was told if I respond to HT surgery may be a possiblity. What I finally figured out was that that surgeon was not going to let me have a masectomy and would only do a lumpectomy. I had wasted precious months waiting and hoping when what I wanted was never going to happen, it was not a hard decision to leave that world class surgeon. In the course of finding another institution I learned about possible immunotherapy coming for MBC so I was less keen on surgery for awhile until I found months later I was not a good candidate for it.
Earlier this year I read and have embraced some of the ideas in Jane Mclelland's book, How to Starve Cancer and recently I have been researching Joe Tippen's experience with fenbendazole.
But here is the sobering kicker, I recently had a liquid biopsy that indicates my cancer is chemo and radiotherapy resistant. My initial biopsies were standard faire and did not provide specific individualized treatments or DNA information. If I had gone ahead with the traditional chemo/radiation in the beginning to get my surgery it very well may have not worked and could have even made me sicker.
I definitely still plan on having the mastectomies, with the now known resistance surgery is my only safe option. Currently my disease appears stable with HT. I feel and look healthy. The HT has aged me quicker, some joints, my skin and hair are thinner. But regularly people who know my situation say, "Well you look good." And I understand.
I also would add, my husband has accompanied me on almost every appointment and he admits if he hadn't seen what has been said and done it would have been difficult for him to believe. My appts with the current oncologist are so short he timed the last one, two minutes twenty seven seconds.
I can only share what has happened to me and it hasn't been what I would have expected it to be. I compare this to being on the Titanic, I would not have stood in line or been crying saying goodbye to my husband. I would have been ripping those beautiful mahogany doors off their hinges and doing all I could to get us both out of there. We have to be our own advocates. I'm glad I found this group, found the others I mentioned above on FB and learned to find research on PubMed and other sources. Your welcome to ask any questions you like.
9/2017, IDC, Left, 2cm, Stage IV, Grade 2, ER+/PR-, HER2- (FISH)