Gynecologic cancers: What do you wish you had known?

I wish I had know to take Vit B before and while while receiving paclitaxel to prevent peripheral neuropathy. Read this https://pubmed.ncbi.nlm.nih.gov/41652105/.

@sle3364 This is excellent news. I hope you can put this in your "rear view mirror" as they say and enjoy the summer. Thank you for the good wishes for all of us!!

No one will explain why I went from a 28 to a 38 inch waist after a total hysterectomy with bilateral salpingo-oophorectomy for endometrial cancer. No one knows how a sucralfate enema should be administered for radiation proctitis. The gastroenterologist does not meet you you just go into hospital outpatient for an APC treatment. Very concertpatient.

@robings
The after-care is indeed lacking. Who knew that we would be left on our own to navigate post-treatment after effects? We are told not to contact Dr. Google, but at least we can get some information that way.

@robings I've gained weight since I had my total hysterectomy for endometrial cancer in 2019. In addition to the increase in your waist size did you gain overall weight?

In my local community I have an excellent primary care physician who answers questions and spends all the time we need together. However, if I'm referred within the community I have a similar experience to what you described. I find that I have to do the work to make sure everything is in place for whatever the treatment will be.

This is not all the case at Mayo Clinic where care is coordinated between and among medical providers and departments. It's an 8 hour drive for us to go to Mayo Clinic and it's worth it. When I've had these excellent experiences at Mayo Clinic I often arrive home wondering why so many medical practices operate in their own silos and do not adopt the Mayo Clinic model.

What is APC treatment? Was that related to the endometrial cancer?

@robings it matters where you receive services, and who is ‘operating the machine’. As far as the 10’ increase in waist size..your body tissues are insulted and are now inflamed at the individual cellular level. It’s counter-intuitive, but drinking lots of lemon water , perhaps Tumeric, to assist lymphatic drainage. Unsure about skin condition and cooling agents, but as soon as possible, compression clothing. My Drs have said ‘no anti-oxidants during Chemo’, but seems like all inflammation could benefit. Constipation issues could be resolved naturally with a big swig of olive oil, prunes, and water. Give it time.

I agree wholeheartedly with Helen about Mayo Clinic. I live two hours away from Mayo Clinic Phoenix. I originally went for a second opinion for my HGS ovarian cancer. The Mayo gyn/onc said she would have been far more aggressive with my original surgery, and that my original surgery was “not standard of care.” (!) I’ve been a Mayo patient ever since. I make the drive up there every three weeks.
During my second course of chemo, I developed a fever. (Fever during chemo is a life-threatening condition.) I went to a local hospital ER. After waiting nine hours, I asked my husband to drive me to Mayo. Within ten minutes of arriving, I saw a doctor and was admitted for neutropenic fever. I spent four days in hospital on IV antibiotics. I will never go to a Tucson ER again, unless I don’t think I’ll survive the two-hour drive.

What I wish I'd known, is that vaginal recurrence is the most common follow-on issue. I was told by someone in radiology that it was lung cancer mets. That's true if there is lymph nodes or vascular spread, and they don't really count vaginal recurrence as mets. I world have been much more pushy about the smell of my vagina if if have known that cancer cells can get there from a hysteroscopy or when the womb is pulled through the vagina on hysterectomy.

@carointheuk thank you … my sister read about the vaginal cuff recurrence and about COLPOSCOPY but they let me suffer for over a year and half before they scheduled a colposcopy after my sister asked about them. Women should have a colposcopy every 5 years after menopause - to screen for cancer.

@ima1survivor thank you … they said it was fat come on they do ct scans and know why - I’d think I was the first woman who ever had a total hysterectomy for cancer -?they see informing patient I think as a liability issue. In any case women REQUIRE an outpatient clinic for medical support after breast and gynecological cancers (recurrence, skin, radiation proctitist effects)