Intraepithelial neoplasia, grade III, of cervix, vulva and vagina & poss uterine CA

Judemo

Please can anyone tell me what their experience with this is?  I also have possibly adenocarinoma endocervical which im assuming is cervical cancer? I'm reading all of this from my internet health portal from the DRs office from a Pap smear & biopsy back in June.  I need answers.  I was all set to have a radical hysterectomy this past Monday when my GYN Oncologist came in right before they were going to take me to surgery to tell me he was throwing me a curve ball & that instead he was going to do a coninization of my uterus to take more biopsies and probably more of my cervix. I was put under general anesthesia and they put in stitches and now I'm recovering at home awaiting pathology reports.  SOoooo, today was the day I was supposed to get results when my GYN/ONCs office called to say the DR wanted to send the pathology results for a second opinion at the oncologist pathology DRs at Washington University (STL) & now this will tack on 6 more days of waiting.  I originally was supposed to have a radical hyst with the whole shebang taken out then they were to stage the cancer, then this curve ball was thrown at me.  Anyone have similar experience?  My CT scan (2 weeks ago) of pelvic & abdomen showed right lower abdominal quadrant mass then I had a PET scan last week that was negative. My DR said he thinks it was just fibroid that showed up on CT.  But, he doesn't say much.  Then the nurse inadvertently asked me out of the blue if I had a history of bladder CA (that was while she was telling me the results of the PET scan)! What the heck?  Anyone with any thoughts? My GYN/ONC did not give me a CA 125 blood test and looks like my other blood work is normal.  CT of chest was normal.  The only pain I was having that brought me into a DRs office a few months ago was right shoulder, scapular & lung pain. Those X-rays back then came back normal.  Sorry for my rant but I'm so confused.  Thank you for taking the time to read my story.  I will know more next Tues July 22nd. This might all be nothing????!!!  Fiibroids?  I have had Hx of HPV, never cleared.  I have had sores in the vulva area for a couple of years that come and go that seem like pimples but really sore and itchy.  Was told a few years ago that my STD tests just showed HPV but my regular GYN at that time didn't seem too concerned. But I've been having itchiness and sores off & on for a while now and just contributes it to spinning and running with spandex on.  I'm 49, married with no children.

 

FightingSpirit

Hello

Hi Judemo,

So sorry you are going through this.  I had non-hpv stage 1b1 endocervical adenocarcinoma as well.  I was originally diagnosed with uterine cancer two weeks before my 49th birthday, but diagnosis was changed after surgery.  Because of the location of the tumor, my gyn/onc sent my path reports off for further testing after surgery, hence the change in diagnosis. Perhaps your gyn/onc didn't go forward with the surgery because there was reason to re-evaluate the type of procedure needed before proceeding.  Are you comfortable asking your doctor why he changed the protocol you discussed?  It's better to know what he's looking for than to be stressed out wondering why he's doing more tests.

The waiting is difficult and seems like an eternity when you just want it OUT.  Take this time to prepare for the next stages of your treatment.....rest, eat well and do whatever helps you de-stress.  Remember, worrying changes nothing at this point.  Hope it turns out well and you don't need any further treatment.  Either way, please keep us posted.

Fighting

Judemo

FightingSpirit said:

Hello

Hi Judemo,

So sorry you are going through this.  I had non-hpv stage 1b1 endocervical adenocarcinoma as well.  I was originally diagnosed with uterine cancer two weeks before my 49th birthday, but diagnosis was changed after surgery.  Because of the location of the tumor, my gyn/onc sent my path reports off for further testing after surgery, hence the change in diagnosis. Perhaps your gyn/onc didn't go forward with the surgery because there was reason to re-evaluate the type of procedure needed before proceeding.  Are you comfortable asking your doctor why he changed the protocol you discussed?  It's better to know what he's looking for than to be stressed out wondering why he's doing more tests.

The waiting is difficult and seems like an eternity when you just want it OUT.  Take this time to prepare for the next stages of your treatment.....rest, eat well and do whatever helps you de-stress.  Remember, worrying changes nothing at this point.  Hope it turns out well and you don't need any further treatment.  Either way, please keep us posted.

Fighting

Fighting, did you ever have CT/PET scans?

Thanks for the reply! What is nevaro level? Did you have radical hysterectomy? Oops, ill go see all your other posts!  Sorry. My GYN ONC told me he might not have to take as much out if it's not as aggressive so that's why he opted to hold off on the hysterectomy which now that I think about it, he probably should have just taken it all out since I'm not having children and with my GYN history then he could have just known then! I wish I would have asked him that at the time but I didn't think about it!  I just assumed he knew what he was doing.  But don't you think if he had just done hyst he would know what we are dealing with?!  Sorry, I'm a little frustrated.....it will be ok.  Thanks for your reply and what type of diet did you opt for vs chemo?

jude

Trixi23

Judemo said:

Fighting, did you ever have CT/PET scans?

Thanks for the reply! What is nevaro level? Did you have radical hysterectomy? Oops, ill go see all your other posts!  Sorry. My GYN ONC told me he might not have to take as much out if it's not as aggressive so that's why he opted to hold off on the hysterectomy which now that I think about it, he probably should have just taken it all out since I'm not having children and with my GYN history then he could have just known then! I wish I would have asked him that at the time but I didn't think about it!  I just assumed he knew what he was doing.  But don't you think if he had just done hyst he would know what we are dealing with?!  Sorry, I'm a little frustrated.....it will be ok.  Thanks for your reply and what type of diet did you opt for vs chemo?

jude

HI

I'm glad somebody is replying to your posts.  I will PM you w/my experience since it is quite personal.  But I'm doing ok @ the moment!

 

 

ioanna

Judemo hi. I am really sorry

Judemo hi. I am really sorry that you have to deal with this too. I have cervical cancer so I can tell you a few things about that. For starters blood work is not always reliable. My ca125 un May was great. The doctor told me that if I only did blood tests, they would not be able to diagnose my recurrence. Also, sometimes surgery is not a good idea. I was not allowed to have surgery because it could cause cancerous cells to spread. I had other treatment options instead. Ask for another opinion. Stay positive and don't give up. Let me know if I can help you anyway

Judemo

ioanna said:

Judemo hi. I am really sorry

Judemo hi. I am really sorry that you have to deal with this too. I have cervical cancer so I can tell you a few things about that. For starters blood work is not always reliable. My ca125 un May was great. The doctor told me that if I only did blood tests, they would not be able to diagnose my recurrence. Also, sometimes surgery is not a good idea. I was not allowed to have surgery because it could cause cancerous cells to spread. I had other treatment options instead. Ask for another opinion. Stay positive and don't give up. Let me know if I can help you anyway

Thank you

for your reply Ioanna!  Just waiting for my rad hyst scheduled for sept 8 then I'll know more about what really is there.  Thanks again for caring enough to reply.