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Old 03-26-2009, 09:54 AM   #1
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I finished my radiation treatments and I want to thank everyone

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!

 
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Old 03-26-2009, 05:47 PM   #2
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zoe96 HB User
Re: I finished my radiation treatments and I want to thank everyone

Hi there --

I don't really have any advice for you, but just wanted to say welcome (although I'm sorry for what brought you here), and congratulations on finishing your treatments! I don't know the recurrence rates per say, but since you've been treated aggressively, with both surgery and radiation, I would think the chances of recurrence would be small. I think all of us, no matter what we've gone through, are terrified that something will come back. We can't think like that! Just remember you received great medical treatment, and you will be monitored carefully, so you are doing the best you can to ensure that you remain healthy.

Do keep us posted on how you are doing! I'm sure if someone has some tips for you they will chime in soon. Regardless, feel free to share what you are going through, so it could maybe help someone down the road -- and more importantly, so we can offer you support as you go through all the steps!!

((hugs))

 
Old 03-26-2009, 06:33 PM   #3
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Re: I finished my radiation treatments and I want to thank everyone

I also dont have much advice to give you BUT, I certainly do agree with the fact that the ladies here have given me more support than ANY other source out there.

I'm glad that your therapy has still left you with a sense of humor and a positive outlook!. May I ask how old you are , and how you came to be diagnosed?.

I am also looking @ a hyst (abdominal) for CINIII so perhaps you would have some tips for me on what you did to stay busy after the hyst to stay sane lol!.

"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!" Oh my goodness that made me laugh my a$$ off!

***hugs***

Jess

 
Old 03-27-2009, 02:49 PM   #4
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Re: I finished my radiation treatments and I want to thank everyone

Thank you for the heads up and congrats on your being done with radiation. I am 10 days in. They initially told me I had adenocarcinoma but then said concurred that it is adenosquamous. I am doing chemotherapy (low-grade) on Mondays and 5 days of radiation. They say the chemo helps the radiation work better so I am not sure why they didn't offer that to you. I am told they don't offer a PET/CT scan until at least 3 months after radiation. I think that is partly due to insurance reasons in this country. Maybe Canada is different. I haven't had too many severe side effects but it sounds like the brachytherapy is not a fun process. They won't know which type of brachytherapy I am doing until he sees how the tumor is shrinking. One type (needle insertion) would require me to stay at the hospital for two days. Didn't they put you under for that? Just wondering if it still was pretty painful.

 
Old 03-27-2009, 05:33 PM   #5
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Re: I finished my radiation treatments and I want to thank everyone

Hi Polli! I'm sorry to hear about all that you've been through. Please post about what you are going through (as Zoe said) so that we can encourage you and support you. Maybe your story will help someone else down the line.

I hope you are feeling well today!

 
Old 03-28-2009, 10:44 PM   #6
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polli HB User
Re: I finished my radiation treatments and I want to thank everyone

Thank you ladies, for responding, for the support and for the hugs!
I think mine is a success story and I hope it helps others.
There seems to be quite a number of women who have had abnormal pap smears.
A big fear is that it will develop into, or turn out to be cancer. It's natural to worry, but this is so beatable!

I am 42, and knew something was wrong in May 2008, because I started bleeding between periods, and after sex. I had blood tests, an internal ultrasound and a pap smear that came back abnormal. That's how it all began.

JessicainCanada Best of luck with your surgery! I recovered very quickly from mine, but I did try to do too much, too soon. If your surgery is to be abdominal - please take extra care.
May I ask how old you are? I hope you have family or friends to help when you come home. Do you know how long you'll be in hospital? Try to make them tell you what to expect afterwards as well. Health professionals don't like to scare us, but I was more than surprised when my genitals suddenly swelled up huge and grotesque a few days after surgery! I thought I was going to need reconstructive surgery! I was laughing when I described it to friends, but was relieved when the swelling went down a few days later.
I know you'll need to walk as soon as possible, but really don't do anything too physical. Organize photo albums? Spend time on the computer? Maybe the weather will be great and you can be outside. Buy a bunch of $4.99 paperback novels from Zellers? (Haha, I ship these across Canada and Prince George sells a lot!)

Avery B I haven't seen much info on here, (or anywhere) about adenosquamous. I kept thinking, "How can it be rare if I have it?". How are you feeling? Its ok to vent a bit if it helps at all. Are you in the U.S.?
There are different types of Brachytherapy. I had high dose. Treatment only took about 10 minutes but it takes longer to "get set-up" for it. Since my cervix is gone, the applicator was just inserted into my vagina.
They used some type of X ray to ensure it was in correct position, then they fed wires into the tube that sent the radiation into me.
I think it's more complicated if the radiation is going right into a cervix. I never actually got to see the tube that went inside me - wonder if they purposely hid it, lol. I let them know it hurt going in the second time, so the third time they used a smaller tube. There were about 6 staff helping to get me ready. One of them told me about low dose rate where patients are in hospital for 2 days. That's a long time to lie still. Is that what you might have Avery? I wonder if you'll get a choice.
If, or when you feel comfortable sharing, you can let us know your age and about your diagnosis. Some members on here have researched a lot and have great advice.

I am feeling better everyday.....but still not looking forward to the dilator!

Take care of yourselves everyone!

 
Old 03-29-2009, 10:22 AM   #7
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Re: I finished my radiation treatments and I want to thank everyone

LOL Polli!......Yes Zellers and Canadian Tire here over the winters (Im sure there is the same)....Is busy busy!.I'm bound and determined to learn to knit if someone would show me how!. Seems now days its a lost art or something because everyone I ask either says they dont know how, or it's too complicated to show me.

I worry that I will be out of commission all summer because my husband and I go a lot of fishing @ our cabin,dirt biking and hunting and I dont think I will be doing any of the above for most of the summer . Oh well I'm sure I can walk the path to our cabin and get a realllly nice tan laying in the sun drinking margaritas.

I'm going to try my hardest NOT to do too much, but I'm one of those go go go people and I think I will have to over medicate myself into submission LOL!.

I'm 29, and strangely enough I was diagnosed after a bad pap (I had NOT gone in 5 years for one).....And oddly enough I had been bleeding after sex, had a strange discharge all of the lovely signs of something amiss, which were all from a bacterial infection I had for who know how long and had made my cervix friable etc. None of the symptoms I had were even from the CIN/HPV.

Fast fwd to the coloscopy and subsequent biopsy...CIN3. There was only one lesion but its location (the TZ zone which was higher up than where MOST CIN is found) worried my gyn as well as me as it is much harder to monitor this type of dysplacia.Mr Doctor suggested a cone biopsy, and I refrained as I knew in my heart that this is not something I want to do battle with for the next 20 some years. Hence my decision for the hyst Which I am very happy with.

I really hope that my vagina doesn't swell up like a balloon, but if it does ty for the heads up. It's not like anyone's is going to be assessing it's beauty for a couple of months anyhow lol.

When you have radiation how long does one have to wait to start having sex again?. Sorry for the personal question but I think it would be good to know for others out there what the timeline is like in terms of healing with that. There are some interesting (non penis looking) ...here it comes... *****'s that you can buy from sex shops that have a vibration type of thingy that perhaps you could have some fun with. I say why not if you are single, and it's been proven that having an orgasm (if you are medically allowed), releases endorphins that make you feel better.

If you dont want to go into a store try a mail order "love boutique", that you could possibly get something from without the embarrassment.

Anyhoo I'm off to enjoy the rare sunshine up here...

***Hugs***

Jess

Last edited by moderator2; 03-29-2009 at 11:49 AM. Reason: posted disallowed website(s) - please read the posting rules

 
Old 03-30-2009, 05:39 PM   #8
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Re: I finished my radiation treatments and I want to thank everyone

I don't know which brachytherapy I will receive until he examines me. THe less painful one is the type where they insert needles in the tumor to obliterate it. THey will hospitalize me if they do this but I think it means the tumor isn't shrinking as nicely. So I guess I want the tandem and ring which is done and put in around the tumor. This requires one long 8 hour day to insert a sleeve and then I go back everyday that week for 10 minute treatments. This sounds like maybe what you had. I can handle the pain if it means getting rid of this! I still have my cervix so it might be more painful. I will ask the doc this question. Thanks for all of the heads-up.

 
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