recurrent cervical cancer

naggymaggie said:

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
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))

beckyracn said:

Hi Maggie,
Glad to hear you
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))

pet scan
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.

New to this discussion
Hi -
I'm new to this discussion, but not to cervical cancer. I also was first diagnosed in 1999 (vaginal bleeding and pain during intercourse), staged at 1B, had a radical hysterectomy including a dozen or so lymph nodes removed. Everything except the cervix itself tested negative for cancer cells. Had lots of follow up exams, including Pap smears, but no other treatment.

Everything was fine until 2008 when i started experiencing rectal bleeding. After a bunch of tests and exams I was finally diagnosed with a recurrence of the cervical cancer which had taken up residence in my rectum and vaginal cuff. This time I had radiation and chemo which seemed to have knocked it out. However, I just received the results of my latest PET scan and couple of lymph nodes a bit higher up in my body seem to be affected.

Right now the doctors feel that they want to wait two months and repeat the scan since the nodes were small and the numbers from the scan (the SUV rate)were fairly low, although over the line into "suggestive of metastases."

Needless to say, the next few weeks are going to be a little nerve wracking until I get the final answer and then have to decide what will come next. I have to say that the doctors I've dealt with have all been supportive, forthcoming with information and very, very caring. For that I am grateful.

I'm interested, as we all are, i hearing other women's experiences with similar situations.

Thank you all for being here!

magg1960 said:

Hi ,My cancer was also found
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!

post-radiation issues
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.

MmeDelta said:

The waiting game...
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
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.

naggymaggie said:

WARNING don't do as I did.
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
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!

thanks
thanks

beckyracn said:

Hi magg,
My journey was a
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!

I had partial hysterectomy and was diagnosed during surgery. I had internet and external radiation, chemo, and another surgery removing lymph nodes. I suffered pancreatitis months after being told I was in remission, my gall bladder removed, and suffered GI problems the past year now that have at times caused me to be unable to eat...at all. I can have diarrhea for no reason at all whenever my body wants, and then I can be constipated for no reason at all, I've had blood on my stools, and severe pain in my abdominal area which could be small obstructions. Colonoscopy was normal. Stools showed my pancreas was not making enzymes to digest my food so I supplemented a prescription RX for that. And, the GI specialist said I had internal hemorrhoid. I have had times where my abdominal pain is so bad I go to the ER because the pain is much worse than my tumor was...and it was like 22 on a scale from 1 to 10. I leave the ER with no explanation. I wanted to share because I was surprised to read another person having GI issues. I feel they're relative to my cancer treatment and my oncologist doesn't agree with me. I'm tired of the symptoms being treatment and nobody working up the problem. I can't get fixed if nobody finds out the cause.

I had a PET that lit up on the vaginal cuff and is suspicious for malignancy. I am waiting for the follow up.

briniusyuzh602 said:

same case
I am interested in this too, and found here so many of us have the same problem.

Cervical ca
Hi briniusyuzh602,

Have you had cervical ca? I'm always looking for sites like this but they always seem to be conversations that took place several years ago. Your post is from a couple of months ago so I thought I'd try to contact you. Are you currently ca free?

susan rose said:

Current diagnoses
Hi Jody
I am trying to connect with women going through treatment now. Your post is the newest I've seen. I still haven't been able to chat with anyone live. I'm not good with the computer I guess. Would like to chat with you even if its through emails....
God Bless
Susan

Hello Ladies,
I know I have
Hello Ladies,
I know I have detoured away from this site as time goes by, but if there is anything you'd like to chat about...I am here. I am almost 4 years out from end of tx for stage IVA. Good luck on your journey.