I posted an "intro" under the intro forum, so please read that BEFORE reading this. That way I won't have to repeat here what I've written there.
I originally reported a problem with my pcp in April, although I'd had my follow-up appointments in March with nothing found. From here, I had x-rays, a CT scan, a biopsy of a lymph node on my shoulder, PET scan (July by now!), was put on lots of meds, had a 2nd biopsy (this time 3 times through my breast bone, then into the lymph nodes -- Ouch!), had an appointment with an ENT specialist to get a scope through the nose, & finally a GROUP of doctors got together to make the determination that I did indeed have a recurrence of tnbc (triple negative breast cancer). So my treatment for metastatic breast cancer didn't start until 8/26.
I got the 1st 2 chemo treatments (Taxol with 5 pre-meds, which takes about 3 hours, 4 counting the bloodwork) through my arm while waiting for my port to be installed. Once the port was installed, I ended up in the hospital with a 6" blood clot on my arm. I ended up having to give myself shots for 3 days, & the pain in my arm was incredible. I'm now on Coumadin to prevent future blood clots & may have to take it for the rest of my life, or at least as long as I have a port.
The reason why I started with arm pain is that the lymph nodes are so swollen they've wrapped around arteries, veins, & nerves. This has caused "travelling" pain as the pain isn't always in the same location. It made sleeping in bed impossible, so we ended up buying a new chair for me, & I spent a couple of weeks sleeping in that. I now sleep mostly in my bed, but still usually resort to the chair for part of the night. I've also managed to take myself off most of the meds (Lexapro, Xanax, Oxycontin, & Oxycodone).
I've currently finished my 3rd round of chemo, each round being once a week for 3 weeks with 1 week off. I'm actually getting 2 weeks off this time to better coordinate with my DH's work schedule. By doing this, he'll be able to take me to 2 of the 3 appointments. For the other one, I have to have one of my 2 kids, my SIL, or a friend take me. I can drive to the appointment, but not home, due to the pre-meds.
I'm told I'll have at least 3 more rounds yet. I'm also told the "cure" word will not be used. The goal is to put me into remission. I just hope I stay there! This tnbc stuff is pretty aggressive, & the future is very uncertain. I'm just trying to stay positive, live NOW, & hope that if it ever does come back, a cure will have been found by then.
I do have cancer in my family, too. My Dad passed away from prostrate cancer at age 59. His brother passed away from it at 54. Their mother had ovarian cancer & died at 31. Her sister had breast cancer & a mastectomy, but I don't know any other details, other than she did at 69, I think, from Parkinson's Disease. I'm 51. I haven't done the genetic testing because the oncologist tells me it's likely only to serve to scare my daughter.
I have a lot of questions about my past treatment, like: why wasn't a mastectomy discussed since my cancer was so aggressive? Why were only breast exams done when it's known that this type of cancer typically comes back elsewhere? Why was I put into a radiation study to check the results of localized radiation to the lump area only, being told that that's where a recurrence typically happens, when that isn't the case for tnbc? I know nothing can be done now, but if these were mistakes made by the professionals involved, it would at least be nice to know that they no longer do this!
When I'm considered in remission, I'll have other questions to ask, like about having a complete hysterectomy to eliminate (to the best of anyone's ability) the chance of uterine, cervical, or ovarian cancer. I have painful scar tissue & a fat necrosis in my breast where the original lumpectomy was done. I'm wondering if I could have this removed & the other breast reduced to match. (The radiation caused a lot of shrinkage, so there's already a marked difference from side to side. Removing more tissue would make bra buying impossible!)
I post pretty regular blogs on my treatment, thoughts, & such on my SparkPage. You can read more there, or just follow my story from here. I also have a personal website (see my signature line) with lots of information about me & my family. You need to be using Internet Explorer to view it, though. (Firefox & Google Chrome won't work.)
I am curious as to whether there is anyone else here with a recurrence of tnbc, especially if you've never had a mastectomy, nor chemo. I'm told I'm unique, so finding someone "like me" would be nice, though at the same time, I certainly don't wish this on anyone else! This isn't a matter of "misery loves company", but that I'm looking for success stories for people like me!
Donna (Upstate NY)
"Even monkeys fall out of trees."
"Suffering is the tuition one pays for a character degree."
"Accept your diagnosis, but never your prognosis." home.roadrunner.com/~andydonna
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