Vaginal Cancer Dx

I have been diagnosed with vaginal cancer.  Well, I guess that's the final dx, although intially it was cancer of unknown primary.  It was felt that the vaginal lesion had metasticized from another area.  In spite of continued testing and searching, no primary site has been found.  I have only the vaginal lesion and possibly one lymph node in the iliac chain involved. I was first diagnosed last September.  I have had 6 months of chemo (taxol and carboplatin) and am now having 35 external and five internal radiation treatments with chemo (cisplatin).  I have had a really hard tmie getting any info b/c everyone seems to think that this type of cancer is rare.  I have adenocarcinoma but it is not related to DES exposure.  I am writing to see if there is anyone else out there who may have had a similar experience.  I also am not able to get a stage or prognosis.  The doctors just keep telling me it is unusual and they don't know what to expect,,,during chemo my tumor (initally 4cm) completely resolved.  I am in the middle of the radiatin cycle and finding it hard to stay positive about the outcome.  Does anyone have any info they can share regarding their experience with vaginal cancer?

Hi.  My name is Phyllis and I wanted to share this with you because I too am concerned about my own recent and problematic diagnosis.  As background, I'm 44 and had a hysterectomy at age 30 due to severe endometriosis and recurrent ovarian cysts.  They left one ovary at that time to avoid hormone replacement therapy.  Seven years later, I had to have part of the remaining ovary removed and subsequently, 2.5 years after that the final portion was removed.  In January 2002, I began HRT (Premarin).  All was well...or so I thought. 

I never had a history of abnormal pap smears nor was I diagnosed with HPV.  However, 10 months after the remaining part of my ovary was removed, I had an abnormal pap (February 2003).  My gyn called and told me I needed a colposcopy due to a few abnormal cells.  He was very surprised it happened; only 2% of gynecological cancers are vaginal related, but thankfully he continued to do paps even though I was post-hysterectomy.  After the biopsy, he called to tell me I was diagnosed with moderate to severe dysplasia and that I needed to see an Oncologist who specialized in vaginal dysplasia.  They suspected VAIN II or III.  I was given the option of chemotherapy cream or laser surgery.  I chose Laser surgery...as a no brainer decision.  The area was larger than either doctor originally thought, diagnosed as VAIN III, but thankfully, the dysplasia had not penetrated the vaginal wall therefore, it was not diagnosed as true cancer.  I was told by the Oncologist that it would never reoccur and that I had nothing to worry about.  Again, it is very rare to have vaginal dysplasia post-hysterectomy and just as rare when you were never diagnosed with cervical dysplasia. 

I continued with quarterly and then semi-annual paps for the over 2.5 years and then finally back to annual.  Since I have a long-standing history of weird gynecological problems; I finally got back on my annual exam routine and just found out last Thursday that I had another abnormal pap that could not exclude high grade cells.  I had a colposcopy/biopsy on Friday and they called today to say it was mild dysplasia.  My gyn is calling the Oncologist (The James Cancer Hospital in Columbus, Ohio) to discuss the plan of action.  From my understanding, vaginal dysplasia doesn't wax and wane, i.e., meaning it won't go from mild to normal or vice versa.  Once it's there it will either stay the same or get worse.  Therefore, I'd prefer to just have the laser surgery again and not wait 3 more months to go through the pap and possibly another biopsy.  If we know the dysplasia won't get better, and the abnormality is going to remain there, why wait another 3 months?  I'd rather do it sooner than later! 

It's ironic with my first diagnosis that I was told that vaginal cancer is not normally aggressive, but it is strange that I went from a normal pap to severe in 10 months time.  Now I am at "mild" and can't help thinking that it could easily change quickly considering the past results.  I understand your concern and just wanted to let you know that I have had a very similar experience.

I'm also concerned about the hormone replacement therapy.  It hasn't, in the past, been linked to vaginal cancer, but it's pretty weird that I had no problems with dysplasia until AFTER I began taking Premarin.  Not sure what to do at this point.  I'll know more tomorrow but may insist that I have the laser surgery instead of waiting.  Considering my history, it may be the better alternative.

Thanks!  Phyllis 

 

 

 

Hi Phyliss,

 

     I just read your history and you have been through quite a bit but

most importantly early detection has been a huge factor.  I had a

hysterectomy 6 months ago and went for a pap smear.  It came back

LGSIL.  The doctor is away so I have not been able to speak with her

but I think it is the same as VAIN I or II.  Anyways , the nurse said

the doctor wants to see me in three months for a repeat pap smear.

 

There is a part of me that wants to believe it will be normal but what

you said is important, the dysplasia doesn't get better on its own

I don't believe, but I really like my gyn and I have not seen an

oncologist yet.  Also, my hysterectomy was for cervical dysplasiaIII.

THanks,

Donna

i was diagnosed in nov of 2006 with stage iii adenocarcinoma of the vagina of unknown primary origin. the md thought it was colon but it was negative. i had seen 5 md over the course of the year before my gynecologists agreed to do a biopsy on what she had said for  a year was scar tissue- surprise!!! the tumor was to my rectum, lymph nodes in both inguinal areas and the tumor had grown int the muscle near one of my hip bones so surgery wasn't an option.i had 39 radiation treatments with the last 11 being hi beam radiation so they wouldn't do implants. i also had chemo of cisplatin at the same time, only had 4 courses of that because it put me in renal failure and had to be stopped. talk about being sick and tired!!!

the good news is that all areas are resolved as of march 20th and no new areas were found. i hope that's the same i hear in 3 months . my mds told me also that it was a rare cancer and thaey can't promise it will stay gone. and it wasn't time to party yet.

I can understand you confusion and feelings. Seven yrs ago I was diagnosed with cervical cancer, which was found after my hysterectomy. It had spread to my lymph nodes and I was given a 40% survival rate. I was treated with cisplatin along with 40 external radiation treatments and 2 internal beams.  I was told that was very aggressive treatment. The radiologist only had one other patient that had cancer to my degree and he was not able to save her. I am still told that 2 internal beams is agreesive, yet you are being given 5? Wow, that  is a lot.  Even after my uterus, ovaries and cervix were removed, here I am 7 yrs later showing signs of pre-vaginal cancer. The doctors keep telling me vaginal cancer if very rare also. That these cells are probably caused by the internal beams. This is how it was explained to me: On a scale of 1 to 10, Ten being vaginal cancer I am at a 2 1/2.  For now all they want to do is wait 6 mts and see if it gets worse. I too and scared and confused.  Not sure if I should be getting a second opinon.  If you have never had the internal beams before...please prepare yourself for them. They are not painful but certainly not pleasant!! In case your doctor does not make this very clear to you, the internal beams will indeed cause your vagina to close. You must use the dilator they provide. Daily!. Its painful at first, but if you don't you will loose depth and it will narrow to the point intercourse is almost impossible and exams. I have had to go to physical therapy in order to stretch back open. Quite humiliating. Even if you have a wonderful husband and partner, it still takes its toll on a relationship. Mine ended in divorce 1 yr later. I just wanted to share that with you, do it for yourself, use your dilator or stay sexually active as much as possible. Its real easy to get discouraged, I know, been there. It sure made me feel like less of a woman. I would be interested to hear how you do. Good luck to you, God Bless.  Ag in Indy

 

 

Given the response to chemo, I think you have every reason to be postive and have a significant chance of long term cure.  You do need to reconcile yourself to followup and no one can tell you at the end of treatment you are cured, only there is no evidence of tumor.  This is mentally very difficult for cancer patients because everyone wants to know now.  So as best you can, you have to forget about it in between followups and live lifte to the fullest and brood about it.  Difficult to do initially and some people do need counseling or a support group to vent.

 

On 3/20/2007 Gcvballmom06 wrote:

Hi.  My name is Phyllis and I wanted to share this with you because I too am concerned about my own recent and problematic diagnosis.  As background, I'm 44 and had a hysterectomy at age 30 due to severe endometriosis and recurrent ovarian cysts.  They left one ovary at that time to avoid hormone replacement therapy.  Seven years later, I had to have part of the remaining ovary removed and subsequently, 2.5 years after that the final portion was removed.  In January 2002, I began HRT (Premarin).  All was well...or so I thought. 

I never had a history of abnormal pap smears nor was I diagnosed with HPV.  However, 10 months after the remaining part of my ovary was removed, I had an abnormal pap (February 2003).  My gyn called and told me I needed a colposcopy due to a few abnormal cells.  He was very surprised it happened; only 2% of gynecological cancers are vaginal related, but thankfully he continued to do paps even though I was post-hysterectomy.  After the biopsy, he called to tell me I was diagnosed with moderate to severe dysplasia and that I needed to see an Oncologist who specialized in vaginal dysplasia.  They suspected VAIN II or III.  I was given the option of chemotherapy cream or laser surgery.  I chose Laser surgery...as a no brainer decision.  The area was larger than either doctor originally thought, diagnosed as VAIN III, but thankfully, the dysplasia had not penetrated the vaginal wall therefore, it was not diagnosed as true cancer.  I was told by the Oncologist that it would never reoccur and that I had nothing to worry about.  Again, it is very rare to have vaginal dysplasia post-hysterectomy and just as rare when you were never diagnosed with cervical dysplasia. 

I continued with quarterly and then semi-annual paps for the over 2.5 years and then finally back to annual.  Since I have a long-standing history of weird gynecological problems; I finally got back on my annual exam routine and just found out last Thursday that I had another abnormal pap that could not exclude high grade cells.  I had a colposcopy/biopsy on Friday and they called today to say it was mild dysplasia.  My gyn is calling the Oncologist (The James Cancer Hospital in Columbus, Ohio) to discuss the plan of action.  From my understanding, vaginal dysplasia doesn't wax and wane, i.e., meaning it won't go from mild to normal or vice versa.  Once it's there it will either stay the same or get worse.  Therefore, I'd prefer to just have the laser surgery again and not wait 3 more months to go through the pap and possibly another biopsy.  If we know the dysplasia won't get better, and the abnormality is going to remain there, why wait another 3 months?  I'd rather do it sooner than later! 

It's ironic with my first diagnosis that I was told that vaginal cancer is not normally aggressive, but it is strange that I went from a normal pap to severe in 10 months time.  Now I am at "mild" and can't help thinking that it could easily change quickly considering the past results.  I understand your concern and just wanted to let you know that I have had a very similar experience.

I'm also concerned about the hormone replacement therapy.  It hasn't, in the past, been linked to vaginal cancer, but it's pretty weird that I had no problems with dysplasia until AFTER I began taking Premarin.  Not sure what to do at this point.  I'll know more tomorrow but may insist that I have the laser surgery instead of waiting.  Considering my history, it may be the better alternative.

Thanks!  Phyllis 

 

I was just diagnosed with vaginal dysplasia.  In 1985, they took out all but 1/3 of my ovaries due to dermoid cysts.  I had a total hysterectomy in 2004 due to bleeding problems – they found out I had fibroid cysts on my uterus and the remaining portion of my ovary was covered with cysts also.

 

I thought they told me they left the cervix because I remember them saying I would still need to have yearly pap smears.   

 

Last September, my pap smear came back abnormal with “low grade lesions”.  I had never had a problem before and my OBGYN scheduled a colposcopy but when I went in, she said that it could wait as my test result showed the HPV was non-existent.  Two weeks ago I had another pap smear and it came back abnormal again, this time with “high grade lesions”.  I met yesterday with a OBGYN Oncologist.  Ironically, he is married to the same woman that did my hysterectomy.  He said his wife very seldom left a cervix when doing a hysterectomy and that he would check my records.  My husband and I them met with him to consult and he said I did not have a cervix.  He said I was very lucky in that nowadays, pap smears are not recommended after the cervix is taken out as insurance companies do not like to pay when there is such a low chance of problems.  He said it is very rare that I would have dysplasia without a cervix but it is a good thing that I did do the pap smears.  Otherwise, I would have had vaginal cancer in a couple of years. 

 

I am going next Tuesday to have Laser Surgery to remove the lesions and will have to do pap smears every 4 months until I get 3 good results, then every 6 months, and eventually every year. 

 

I hope everyone realizes how important it is to get pap smears, even without a cervix.

 

Thanks, Diane

 

 

 

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