Cancer Survivors Network

I am 2 years post treatment and like you said always thinking about it ,was yours the same as mine?

Hi magg,
My journey was a bit different from yours. My CA was found during a routine pap...when my doc said "Oh ****!" and things proceeded quickly after that. Gyn staged me at a IIB, due to what he saw and what the CT showed. Went in for a radical hyster. when they found it had mets to pelvic/ileac/aortic lymph nodes and attached to bladder. They took a bunch of lymph nodes, left everything else behind, and stapled me back up...new DX stage IVA. Then on to 33 external radiation, 10 chemo, 5 internal radiation. Tx ended Aug. '08. Since then my rad. oncologist has restaged me at IIIB, skirted around the explanation as to the change, but I have no problem going along with that, because statistically it sounds better.
Have you experienced any abdominal problems? About 4 months out of tx I started developing severe GI problems (different than during tx)...worse nausea/vomiting/pain than I had experienced during tx. They did every test imaginable. They all decided upon an educated guess that I am experiencing intermittent partial small bowel obstructions with complication related to scar tissue and adhesions. This comes and goes with a slew of other GI complications. They tell me that until my GI totally shuts down, they won't perform surgery...this would just cause more scar tissue and adhesions. It's also intrfering with my aortic artery, but until my leg turns cold/blue they won't touch it. I can understand this and have learned what I need to do during these times. What bothers me the most is their universal feelings of "We cured you. Be grateful that your alive" attitude. There have been many times that I wished I'd never received tx...this new "normal" life isn't living. It's existing....miserably. Then things turn around and I can pack all the pills away/eat again...life is good...and wait for the next episode. I've had the best tx through my acupuncturist. He's been my strength through all this.
They don't consider you in full remission until you reach the 5 year mark...you reached that before recurrance...I am so sorry. That had to be like a slap in the face! I try not to focus on when and where this dreaded disease may pop up again, but it is always in the back of my mind...cannot lie about that. One day at a time!

Hi ,My cancer was also found during a routine pap smear the first time .also since my radiation i have had several bowel problems and it has also caused so much scar tissue that I am no longer sexually active,it has completely blocked that part of my body.Which i have no desire anymore anyway! Yuck! lol ,My radiation was directed almost entirely in my vaginal area when yours was probably in your stomach area?So they didnt do a hysterectomy ?All we can do is hang in there and hope this dreaded disease does nt come back! We kicked its butt!

Yes we did...and lived to tell about it!!!

Let me know sometime when you are online and maybe we can chat

Good day magg,
It would probably be a little difficult to catch each other on line, but we can converse via private email on this site...just got to remember how to do it. Hope your day is a good one!

I am really sorry to hear about your incident. You must be having hard time but you sound to be still going strong. I really envy your courage and confident. I wish you all the best that you will be able to kick this dreaded disease out. Cheers to life !!

For magg and others --

I had 28 radiation treatments and 6 chemo (cisplatin) and my new digestive system "norm" is weird tlasting sometimes for three or four hours that felt like a gall bladder attack and even had an ultrasound to rule that out. That eased off, but I definitely have problems from time to time. As for scar tissue in the vagina -- my radiologist gave me a vaginal dilator and instructions to start using it three times a week for ten minutes each time starting about 6 weeks after the end of treatment. It has made some sexual activity possible(which it wasn't before) and also has made it possible for me to endure pelvic exams, which were excruciating before. Might be worth checking out.

Hi Becky, I'm so sorry for your struggle. I am experiencing similar GI problems and like you the doctors just want to say, "We cured you." It's very frustrating. I see you wrote this a year age and I wonder if you have gotten any relief in the meantime.

Thank You! Kelly

naggymaggie,
It sounds like you have a great support team for the physical aspects of living, but all of us here know that what you can't see, our emotions, are so very important to address. This is a great place to be, because we all know exactly what your feeling.
I wish the best for you on your upcoming biopsy. It sounds like the docs will determine your treatment options once they've completed the biopsy. Internal radiation treatments are a little invasive, but doable considering all that you've been through. Developing scar tissue in that area, for most, is a given. Your options after treatment will be to use a vaginal dilator daily (for the rest of your life) or regular intercourse to keep the scar tissue at bay...and plenty of vag lubricant.
Keep us posted on your progress.
((HUGS))

I have my day surgery biopsy Dec 8th and I will post afterward when I have results. I don't use a dilator because I am not sexually active anymore. It sounds like it will be necessary if I have radiation just to allow pelvic exams afterward. Thanks for the advice this is a good place!

Finally-10 days later I have pathology results! Squamous cell again but this time papillary type. My nodes were negative in 2006 and my recent PET just lit up in the vaginal cuff so the recommended action from the tumor board is just lower pevic external radiation and internal radiation. Apparently no better success for localized and different type of cancer with Chemo, just increased side effects. Does this sound right? Apparently there was someone from MD Anderson at the meeting so I feel pretty confident with their decision and won't miss the side effects of chemo! Hope to get started ASAP to knock this new cancer on it's rear!

maggie,
I'm so sorry to hear that your pathology came back confirming a recurrance. I don't know the protocol for treatment, but I do know if I have a recurrance in the same area I will only be offerred chemo because I have already had the maximun internal & external radiation. Get out there and KICK IT'S BUTT!
((HUGS))

I had my first of 25 external treatments today. I was given some aloe gel, told to get a sitz bath and aveeno powder. But my two questions went unanswered-maybe someone here knows. Why are the three internal treatments scheduled at the end of the external treatments when I will be (to quote my nurse) "so raw that she can't use lidocaine jelly when inserting the cylinder because it will burn me" seems like the most painful procedure should start before the other side effects begin The other question that the radiation techs nor the nurse knew the answer to is, should I have a full bladder before the external treatments. She said my bladder will be effected by the treatments, and it would make sense but she wasn't sure. Seems like a very basic question to me and I won't see my doc till next Thursday. Help from wise women who have, been there, done that, would be appreciated!

maggie,
I'm not sure why the nurse would say such a thing. Each person responds differently to the treatments. Many of us never had skin issues. I had 33 external treatments to abdominal/pelvic area without any skin issues. Internal issues were a different story. As to whether or not you should have a full bladder, I was told it didn't matter. My bladder received an extra added touch of radiation due to the attachment to it and I was much more comfortable lying on that table with an empty bladder. As for the reasoning about waiting until the end to do the internal treatments, they told me that the numerous external treatments is what kills off the majority of cancer cells and the internal at the end is like "the big gun" coming in at the end and killing off the rest.
Don't let yourself get all stressed out worrying about what might happen down the road. Take it one day at a time. You may be one of the lucky ones and never have skin issues. Keep us up to date!
((HUGS))

radiation is over- two and a half weeks past and I am feeling much better-still sore when I urinate (skin). I guess it is time to try to dilate although my vaginal area is still raw. I have a PET scan and CT scan scheduled for 6 weeks after the last radiation. If all is clear then I am getting the dog I have been waiting for. It will improve my spirits greatly and though I had been waiting for 5 years clean that clearly wasn't in the cards. I have decided not to wait on cancer and to start living! Happy Spring!!

Hi Maggie,
Glad to hear you survived the radiation...I was wondering how you were doing. Did you finish your internal radiation also? So, now you've graduated to the wonderful dilator. It can be a pain in the yoohoo, but it works wonderfully to keep the scar tissue at bay. The other choice is to have intercourse on a regular basis. I've found an inconsistancy with the doc's doing scans after treatments. I had to wait almost 3.5 months before my radiology oncologist would do a scan, because he said I had received so much radiation that if I did it any sooner, everything would light up do to the heavy treatments. But, another woman I befriended, whom was going through the same treatments (but no mets) had her scan 6 weeks after treatment...she did not receive as much radiation or chemo as I did. I'm jut glad your through with it!
It's good to see you write "I have decided not to wait on cancer and to start living!" Go out and get that dog you want so much...he/she will do so much for your spirits. My dog, Shadow, was literally my shadow throughout my illness/treatments. Also, my cat. When I laid down on the couch, my dog would lay on the floor next to me and the cat above me. They were patient with me when our walks around the yard became shorter and slower. And they were right there when I would plunk myself on the ground and cry, because I couldn't go any further.
Keep me posted on how your doing.
((HUGS))

my pet scan was clear~my doctor was so pleased. I am sure they love giving positive news when they can. He stressed how important dilation is since the likelihood of recurrence is highest in the cuff area. I go back to see him in 3 months. Love life! Thanks for the encouragement and hope you are feeling well too.

maggie,
my latest is...dysplasia is back. High grade HVP doing it's darnded to take hold again! I am fighting it with all that I have. Great to hear things are going well for you :)

i had the radiation you are talking abot and the reaon is if it was the way they did mine they directed the radiation straight into the vagina which made me very sore,it took abot 15 treatments before i noticed.After that I had the internal radiation which they had to wait on me to heal before they could do it.It was very painful but as soon as the radiation stopped it healed within a week .My tumor was next to my bladder and you said yours was in the cuff did they say it was in scar tissue? ............hang in there it get better

I am also currently on drug test . Hope i will have my surgery perfect and i will be fine. But why to use a dilator? I think it doesn't matter with sex thing. Anyway thank you for your information. And i will also share my feelings after my surgery is complete after my drug test.

dear maggie I had internal radiation and it was not that bad of course mine was not done with the rods because of my bladder being too close but they put a round tube with wires going thru it into my vagina once a week for an hour each time for 6 weeks.Before that I had chemo and radiation in my vaginal area (radiation) ,the radiation burnt that part of my body and yes as the other lady said a dilator is part of my daily routine ,I also had to go into a hyperbaric chamber to heal some wounds I had in the vaginal area.The internal radiation isnt real bad and if you have pain they give you plenty of meds but shouldnt be that painful,are they doing radiation directly into the vagina? Hang in there hunnay ! Maggie (also)

Dear jill ,You asked what symptoms I was having ?Main symptom was recurrent bladder infections and had to pee every 5 mins.The tumor was found by a cystoscope from a urologist ,no one else could find it.Yes it was cervical cancer ,squamous cell carcinoma,I had pap smears every 3 months but it didnt show on them.Are you having trouble now? ................Maggie

yes my cancer was still squamous cell carcinoma the same as before, my symptoms were I had to urinate every 10 mins and frequent bladder infections.When i had my hysterectomy they did not give me any kind of treatment ,I thought it would never coome back the 7 yrs later it recurred.I had 35 radiation tratments and 5 chemo.I also had cystitus from the radiation and had to go to a hyperbaric chamber to heal the wounds.Yours may not be that bad because you recieved treatment after your hysterectomy.................try not to worry about it:)

Mme,
The waiting game is the hardest part of this whole disease. I'm sorry to hear that you have lymph nodes lighting up. I get stressed every time a doc suggests a scan. Haven't had one in a while... Met with my radiology oncologist last week and he's suggesting we attempt a total abdominal hysterectomy again (last time failed once they got inside and found the mets). So, I too, am patiently waiting to meet with the surgeon. I wish you luck on your journey.
((HUGS))

beckyrqcn -

I hope you are getting the news you want to hear. Surgery isn't fun, needless to say, but if it works it's worth it. I wish you luck on your journey as well. It's good to know there is a network out there of folks who know what this journey (or, as I've been referring to it, this "adventure") is all about.

Mme,
I've got mixed feelings about what the doc said. I'm not a candidate for surgery at this time...it is a last resort due to the amount of radiation I received. Basically, with all the scar tissue and adhesions, my guts are glued together. As a last resort, in the event the ca returns to cervix/female organs, surgery would be a pelvic exeneration...not a happy thought. Good news is, the change in the cells has not advanced since March. Yes! So, the adventure continues...and I do my best to forget about it until the next doc/scan appt.
I hope things are going well for you.

Let me say I HATE dilating-it hurts and is a reminder of cancer and loss for me. So I stopped. I was living in ignorant bliss because after not dilating for two weeks I found that I couldn't! A month went by which was heaven, didn't think about cancer at all ,then flipped the calender and saw Appt with Dr ... and panic! I called the nurse and she said they would have to open me up in the office. I totally freaked out and agreed to come in but refused to undress and kept my legs crossed the whole time just to be sure. Bottom line I had to have a day surgery procedure because I was completely closed -post Radiation effects I guess. Ladies please dilate-keep yourself open because that was hell. I now have pain medicine precribed that I take 45 minutes before I dilate, which I do every night, and although I still bleed it is bearable. Lesson learned!!!! Next appt. In Two months- ps... The biopsy they did in the OR was clear so some good did come from the whole ordeal! Becky hope you are feeling ok-I got my dogs that I had talked about-they are 6 month old and are keeping me feeling positive!

Hi Maggie,
Long time no hear...glad things are still going well for you. Great to hear you got the dogs...they are the best!! I'm hanging in there...one day at a time.
Keep dilating girl!