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Genetic testing...does anyone have the CHEK2 gene mutation?
Breast Cancer | Last Active: Nov 1 4:41pm | Replies (73)Comment receiving replies
Ohhh...Zebra,
I am near speechless... Ughhhh, my heart is very much crushed for you.
You understand my fear and concern of disturbing/spreading cancer cells (a form of cross contamination) via blood and tissue! How can oncologists and the scientific community say there is no proof? NIH research commonly includes inducing cancer, bacteria, virus and a whole array of diseases in mice (other animals also), for experiments/study's.
Tuesday I see an oncologist I have met once (March 2023). I would like to request a mastectomy which removes all tissue, without disrupting or cutting anything near where the MRI shows suspicious cells near the nipple and no lymph node removal. It's my opinion that IF there were cancer cells in a lymph node (or nodes), there is a very good chance of being Stage IV and it would do no good and leave me with additional lymphedema. I have chemotherapy induced neuropathy in my right arm. To me, it was better than frying my heart with Cytoxan and Taxotere. Considering what it did to my arm/veins, I believe I made the right decision.
I was entirely sucker punched by the MRI and really know little about breast removal. I want the right breast gone and am ready to have the other removed also. Nine years ago I was desperate and so fortunate to have had reconstruction which was over the top, considering the mess the reconstruction surgeon had to work with. Swedish breast surgeon spent 7 hours trying to undo a twisted and contorted mess. All skin and nipple were there, just tied up like twisted bun, with the nipple facing 3:00 PM. - towards the armpit.
In the end, I'm tired of holding my breath every time I have a mammogram or MRI.
This is new territory for me and I would be grateful for someone with more knowledge and better words to make suggestions. I hadn't heard about the "dog ears," but can visualize this and would like to avoid it. I'm thinking "muffin top," except up where the bra sets, below the armpit. And to think there are "Breast Surgeons" leaving women even more disfigured than they have to be...
I'd like to know if you have researched Antabuse or Fenbendazole? There are very promising studies by the National Institute of Health on both drugs.
Thank you for sharing.
Replies to "Ohhh...Zebra, I am near speechless... Ughhhh, my heart is very much crushed for you. You understand..."
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@deborahmontana
You know I always wondered if cancer was spread by the scalpel during surgery, but I was only thinking about my chest. Until I just read your message, I didn't even think about the lymph nodes. I had 6 removed for biopsy and now I'm wondering if she used the same scalpel for the mastectomies and the lymph nodes. If she didn't think cancer cells were on the scalpel then why wouldn't she use the same scalpel? Hmmm.
I think cancer in local lymph nodes is considered stage II, but others may have more to add about that. Ask your surgeon a lot more questions about that. I for one want as much cancer surgically removed from my body as can be. To me, it seems the more cancer cells there are, the more that can divide and spread. They also don't know how to treat your cancer unless they know the stage.
It sounds like you were really lucky with the reconstruction. That was a very visual description with the twisted bun. Eeek.
Dog ears, yes exactly, muffin top underneath where the bra would be on your sides under your arm pits. They weren't there before the mastectomy. It causes an extra 4" girth around my chest. I could wear a size smaller blouse without those. If I wear my prostheses then it's not so noticeable, but if I go flat, you can notice the bulges on my sides. For awhile I even got too thin, but those were still there. Troopers! Looks weird so I tend to wear loose blouses when going flat which is most of the time because the prostheses are hot, heavy and uncomfortable. Like wearing a backpack, but a front pack. I'm at least lucky that the skin doesn't fold over on the sides. It does for some women and causes a yeast infection in the fold and then surgery to remove the excess tissue is no longer optional.
Speaking of being disfigured, I also don't understand my incisions/scars. My surgeon did an inverted T cut on each side leaving me with about 22" of keloid scars total. I have never seen that cut in a photo. Photos I've seen online show maybe a 5-6" horizontal incision where each breast was and that's it. The next surgeon for my recurrence didn't seem impressed with the lack of flatness on the front of my chest either and flattened that one side more when the chest wall tumor was removed, but it still doesn't look good. Still too bumpy. My chest looks nothing like I imagined it would. I would ask a lot of questions about what it will look like afterwards. Ask to see photos of what it will look like. I was shown photos of what reconstruction would look like, but not what flat would look like. People with normal scarring probably have the scars nearly disappear with time. They kept telling me the lumps I felt underneath the skin, below the incision, post-mastectomy may be scar tissue so maybe my scarring disorder is to blame for some of that too.
No, I hadn't researched or even heard of Antabuse or Fenbendazole. I just looked them up for a brief overview. I do know that @leeann66 is in a stage III clinical trial for a new breast cancer drug Tropion for women with stage IV cancer who have tried other treatments and they stopped working. It seems to be working great for her last I read, but who knows when it will be approved. You might want to search her screen name for threads about it.
I hope you'll be on the other side of all this soon so you can get back to enjoying life.