Last week I finished my radiation treatments and I wanted to thank everyone here for all the helpful information. It was nice to feel like I wasn't the only one going thru this type of thing.
Although I just registered today, I have been reading posts for months.
In September 2008 I had colposcopy and biopsy and was diagnosed with adenocarcinoma in situ.
In October I had a cone biopsy which confirmed invasive adenocarcinoma. Things like this seem so surreal when it's happening to you!
In December I had a (radical) laparoscopic assisted vaginal hysterectomy/salpingectomy and they also removed a bunch of lymph nodes. I was sent home the same day with a catheter attached!
Aside from the infection that developed a few days later - temp went to 103.5 and I felt like crap -
oh and the very weird swelling of my genitals!
- I healed quickly and returned to work less than 2 weeks later.... I probably should have rested longer but I am a divorced mother of 3 and struggle to pay the bills.
(Although I have no drug benefits thru my employment, I live in Ontario so all I've had to pay for was antibiotics and pain medication. I have no idea how it works in the U.S.or U.K. )
In January my gynecologist/oncologist reported : clear lymph nodes - YAY! But I had LVSI - lympho vascular space invasion - I still don't really understand that term - was the cancer on the way to the lymph nodes? Also one of my margins was "very small" - less than 2mm? The pathology report also said I had adenocarcinoma AND adenosquamous. Apparently that is more rare and it's really hard to find information about it online. (I was never told what stage I had.)I was told I was high risk for recurrence and the panel of doctors at the Juravinski cancer centre agreed I needed radiation treatments to ensure all the cells were gone and to prevent recurrence.
My radiation oncologist wondered about chemo as well, but my gyn/oncologist either didn't think it was necessary or didn't think it would be beneficial.
Thru February and part of March I received 25 external radiation treatments and 3 internal radiation treatments (High Dose Rate Brachytherapy) Internal really sucks! It's difficult to make that trip every weekday. I tried to keep working thru all this, but it was too exhausting and I was too emotional. I had been dating a man (dating is not as much fun when you can't have sex!) but ended the relationship. He didn't even visit me after my surgery and not once offered to go with me to an appointment! His idea of going thru this with me was to give me space??! Luckily I have my kids and family and very good friends.
Side effects from the radiation took 2 to 3 weeks to start - mostly constant and urgent diarrhea and stomach pain and fatigue. Radiated skin hurts a bit, but the sore bleeding anus is the worst.
If I still had my cervix the brachytherapy would have been even worse, but it still wasn't pleasant!
The second internal treatment I had made me cry. The tube felt very sharp when they inserted it, and they had to move it several times to get it in the correct position. The last internal, they gave me a tylenol 3 before they started and then used smaller equipment. Pelvic radiation causes vaginal stenosis, though it shouldn't have started yet. My vagina will lose all elasticity and basically close up eventually if I don't use a vaginal dilator! Once I've healed inside, I will have to insert this dilator at least 3 times a week for the rest of my life. The oncologist nurse showed me what looked like a big plastic test tube - but said what I should do is go to a sex shop and buy something more comfortable, lol. I have not yet done this! I did look online, but I am so clueless! I don't want anything too thick so I looked at a few that were "thinner" - but I think they were for the "other" hole!
I'm going to need help and I embarrass easily.
Aside from the vaginal stenosis I also have menopause to look forward to! The radiation shuts down the ovaries. I did wake up last night sweating, so maybe it's already happening. They told me at the clinic that they wanted me to heal before considering any hormonal treatment. If anyone has any insight on therapy induced menopause I would love the advice. I hate surprises and would like to know what to expect.
I have a follow up appointment in mid April with my radiation oncologist, and I know I'll have follow up with gyn/oncologist, but I don't know how often, how long I'll go, or if they'll ever test for more cancer.
I worry a bit of course about recurrence. And I worry because I have/had adenocarcinoma and adenosquamous of which I can't find much information. Do my doctors not seem worried because they know more than I do, or because it's not them? Anybody on here had recurrence? What signs/ symtoms should one watch for?
Thanks again everybody for being there. I might return to work next week if I feel up to it, but will check in here when I can. I wish everyone well. If I could make it thru all this than you can too! Good luck!