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Feb 23, 2018 07:42AM
I thought I would check in with some fresh perspective on this topic after I had made my choice to get a skin saving nipple saving double mastectomy January 9 after finishing a total of 16 rounds of the strongest treatments of chemo started July 6 for braca2 stage 3 invasive ductal carcinoma with an unidentifiable mutation.
Our goal here was to treat me as quickly and aggressively as possible to keep me encapsulated so I waited until the largest tumors shrank enough to be safely removed before reconstruction surgery that had already hit my lymph system on left.
I agreed to use the same team of doctors that cured my mothers breast cancer 3 years ago with just radiation and a lumpectomy but failed to test for Barca 2 at the time because insurance did not deem it worth covering back then!!! They NOW will be testing our entire genetic line that requests it free of charge as a START to making it up to me!
If I had a chance to plan my options at ALL I would have opted for radiation first then a double mastectomy the same way but even that was more humane than I could have hoped for. I would have been more receptive of the idea of giving up the additional 3 organs that function fine fully disconnected and are disease free currently. It strikes me as arbitrary and insane of a expensive legal demand made of me during treatment of my disease as forcing me to pay for several pregnancy tests knowing full well it is NOT possible after a documented thermal ablation in 2008 on top of complete current celibacy! I’m a tad insulted by the implications the insurance company’s like to use to challenge coverage promised by calling it voluntary or experimental or not worth covering!!!
One issue at a time I will set it straight rest assured but the most frustrating and misleading reason to have a double mastectomy is that it eliminates ALL future risk of returning. I thought that too at first but even the relief of knowing I will NEVER endure another painful breast biopsy made it all worth it to me! I had been staked for years in a row for my calcifications and told they were all benign and could NEVER cause breast cancer back in 2009!
Not one of them can look me in the eye to this day knowing I could never sue anyone for that level of ignorance not to mention how many years of agony it put me through just to obtain the validation of a proper diagnosis in time to save my life at all!! I want every doctor alive to remember ME the day they fork over their malpractice insurance payments!
For those who had lymph system damage like me it does NOT because it is systemic system and resides beneath the rib cage as well so while reducing risks is a positive goal, we need to be honest about the degree of total risk reduction obtained on a case by case basis ONLY!
No two patients respond the same to treatments of all kinds so it needs to be a much more responsive process interactive to all that data they live so much to charge for testing only to ignore the results if they even arrive in time to matter to the patient paying for it ALL!
Remember these people ALL work FOR you and if you don’t like the treatment of the week they are pushing without providing accurate ranges of options or valid studies WITHOUT financial incentives to recommend less safe and much more expensive options PLEASE feel free to WALK away and find a second opinion from a honorable professional who has the respect to discuss your options free of personal bias and willing to show you the respect you deserve during your experience with them from start to follow ups!
Best of luck to everyone
I’m in and out of the hospital with minor complications but still not out of the woods yet because the unexplained weight loss is getting worse and nobody can tell me why. Feels like square one again but bald hated and humiliated for ALL the promises that have YET to come true for me. I guess it was my fault for believing in people I trusted with the care of my life to at least have the decency to be honest with me about it.
I’m doing my best to change things by forcing answers to be applied to SOLVING the problems instead of becoming just another opportunist trying to make a buck off it all! Every dirty payment received to perpetuate human misery for profit will face the price one day and I know it could never be worth the cost of being caught delaying a potential cure for profit!
I think that’s worth more to me than any amount of money
6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2-
7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel)
9/2/2017 AC + T (Taxol)
1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement