recurrent cervical cancer
Comments
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I am 2 years post treatmentbeckyracn said:magg,
So sorry to hear about
magg,
So sorry to hear about your recurrence. I am one year post treatments and so far so good...always in the back of my mind. How are you doing?
I am 2 years post treatment and like you said always thinking about it ,was yours the same as mine?0 -
Hi magg,magg1960 said:I am 2 years post treatment
I am 2 years post treatment and like you said always thinking about it ,was yours the same as mine?
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!0 -
Hi ,My cancer was also foundbeckyracn 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!
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!0 -
Yes we did...and lived tomagg1960 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!
Yes we did...and lived to tell about it!!!0 -
Good day magg,magg1960 said:Let me know sometime when
Let me know sometime when you are online and maybe we can chat
It would
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!0 -
I was diagnosed with carcinoma in situ after a cone biopsy in 2005. Had a hysterectomy in 1/2006 path came back as squamous cell carcinoma into the vascular and lymphatic systems but not more than 7mm at any point into the cervix. I had a radical parametrectomy with pelvic nodes removed 2/2006. My nodes were clear but there was cancer in the surrounding "fibrofatty tissue" which was removed. I had clear paps till 3/2009 but the colposcopy/biopsy was "ok". Then I had elevated liver enzymes that showed up on a yearly physical work-up in Sept. CT showed a 2cm mass so I had a PET scan. Glad to say my liver did not light up and my enzymes have returned to normal but an area on my vaginal cuff did light up. Colposcopy/biopsy shows severe dysplasia. Because of the PET results and the appearance/bleeding during biopsy and path. my doctor wants to do a day surgery biopsy. He suspects it is back. The next step if positive , I guess, is chemo/radiation but I have an extreme fear of internal radiation. I already have a lot of pain with spotting during a normal pelvic so I am very worried. Does anyone have advice? Maybe I could just do one round of internal after the external rad/chemo? I know I am thinking ahead but I don't like making rush decisions or surprises! I like my Doctor and have a great facility but they really don't to talk. My family gets stressed out if I talk about my concerns- everyone wants to do grocery shopping for me, cook for me-sweet but unnerving- I am not dying- I just need an ear.0
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naggymaggie,naggymaggie said:I was diagnosed with carcinoma in situ after a cone biopsy in 2005. Had a hysterectomy in 1/2006 path came back as squamous cell carcinoma into the vascular and lymphatic systems but not more than 7mm at any point into the cervix. I had a radical parametrectomy with pelvic nodes removed 2/2006. My nodes were clear but there was cancer in the surrounding "fibrofatty tissue" which was removed. I had clear paps till 3/2009 but the colposcopy/biopsy was "ok". Then I had elevated liver enzymes that showed up on a yearly physical work-up in Sept. CT showed a 2cm mass so I had a PET scan. Glad to say my liver did not light up and my enzymes have returned to normal but an area on my vaginal cuff did light up. Colposcopy/biopsy shows severe dysplasia. Because of the PET results and the appearance/bleeding during biopsy and path. my doctor wants to do a day surgery biopsy. He suspects it is back. The next step if positive , I guess, is chemo/radiation but I have an extreme fear of internal radiation. I already have a lot of pain with spotting during a normal pelvic so I am very worried. Does anyone have advice? Maybe I could just do one round of internal after the external rad/chemo? I know I am thinking ahead but I don't like making rush decisions or surprises! I like my Doctor and have a great facility but they really don't to talk. My family gets stressed out if I talk about my concerns- everyone wants to do grocery shopping for me, cook for me-sweet but unnerving- I am not dying- I just need an ear.
It sounds like
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))0 -
dear maggie I had internalnaggymaggie said:I was diagnosed with carcinoma in situ after a cone biopsy in 2005. Had a hysterectomy in 1/2006 path came back as squamous cell carcinoma into the vascular and lymphatic systems but not more than 7mm at any point into the cervix. I had a radical parametrectomy with pelvic nodes removed 2/2006. My nodes were clear but there was cancer in the surrounding "fibrofatty tissue" which was removed. I had clear paps till 3/2009 but the colposcopy/biopsy was "ok". Then I had elevated liver enzymes that showed up on a yearly physical work-up in Sept. CT showed a 2cm mass so I had a PET scan. Glad to say my liver did not light up and my enzymes have returned to normal but an area on my vaginal cuff did light up. Colposcopy/biopsy shows severe dysplasia. Because of the PET results and the appearance/bleeding during biopsy and path. my doctor wants to do a day surgery biopsy. He suspects it is back. The next step if positive , I guess, is chemo/radiation but I have an extreme fear of internal radiation. I already have a lot of pain with spotting during a normal pelvic so I am very worried. Does anyone have advice? Maybe I could just do one round of internal after the external rad/chemo? I know I am thinking ahead but I don't like making rush decisions or surprises! I like my Doctor and have a great facility but they really don't to talk. My family gets stressed out if I talk about my concerns- everyone wants to do grocery shopping for me, cook for me-sweet but unnerving- I am not dying- I just need an ear.
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)0 -
biopsy Dec 8thbeckyracn said:naggymaggie,
It sounds like
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!0 -
Questions
I just found this web site, I wish I had found it along time ago. I was diagnosed with stage 2 cervical cancer in 2001. I had a radical hysterectomy with lymph nodes removed, 6 chemo treatments and 30 external radiation treatments. I have a lot of the same symptoms from treatment as some of the other women on this site. I have only had one bad pap since my treatment which was this past December. I have been diagnosed in the past with radiation proctitus and radiation cystitus. I would like to know what symptoms you were having from the tumor that was found in your vaginal vault and is that still considered cervical cancer or is it labeled as another type of cancer.
I wish you well.
Respectfully,
Jill0 -
Dear jill ,You asked whatnvr2late said:Questions
I just found this web site, I wish I had found it along time ago. I was diagnosed with stage 2 cervical cancer in 2001. I had a radical hysterectomy with lymph nodes removed, 6 chemo treatments and 30 external radiation treatments. I have a lot of the same symptoms from treatment as some of the other women on this site. I have only had one bad pap since my treatment which was this past December. I have been diagnosed in the past with radiation proctitus and radiation cystitus. I would like to know what symptoms you were having from the tumor that was found in your vaginal vault and is that still considered cervical cancer or is it labeled as another type of cancer.
I wish you well.
Respectfully,
Jill
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? ................Maggie0 -
Biopsy resultsnaggymaggie said:biopsy Dec 8th
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!0 -
maggie,naggymaggie said:Biopsy results
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!
I'm so sorry to hear
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))0 -
Radiation Helpbeckyracn said:maggie,
I'm so sorry to hear
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!0 -
maggie,naggymaggie said:Radiation Help
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!
I'm not sure why the
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))0 -
maggienaggymaggie said:Radiation Help
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!
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 better0 -
hellonvr2late said:Questions
I just found this web site, I wish I had found it along time ago. I was diagnosed with stage 2 cervical cancer in 2001. I had a radical hysterectomy with lymph nodes removed, 6 chemo treatments and 30 external radiation treatments. I have a lot of the same symptoms from treatment as some of the other women on this site. I have only had one bad pap since my treatment which was this past December. I have been diagnosed in the past with radiation proctitus and radiation cystitus. I would like to know what symptoms you were having from the tumor that was found in your vaginal vault and is that still considered cervical cancer or is it labeled as another type of cancer.
I wish you well.
Respectfully,
Jill
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:)0
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