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  #1  
Unread 12-13-2002, 08:38 AM
New here...

Hi Everyone

I'm new here & have been taking it all in these past few weeks! This site has answered so many questions & has been so helpful!!! All of you ladies are truely wonderful, so supportive & knowledgable...what a comfort! I received my cone biopsy results a couple of weeks back & it seems that some of you ladies have had similar dx's. Mine is endocervical adenocarcinoma insitu which I will have a TVH (if possible) on Jan 8 (getting close). The doc says because I do not want to have children, this will be the best route to go to help ensure a better outcome down the road. With all my research, I agree with her and although I do have a preop appt to have some questions answered, my curiosity is getting the better of me...so I though I would throw a few comments/questions out there to see if any of you have any input...my doc is a bit of a sugarcoater but I previously worked in the medical field for 10 years (lab, dr asst, reception, cancer patients, helped to take care of my dying father, etc.)...so, I don't really require the sugarcoating "everthing looks great" approach, when it's really not. I'm much more concerned about my finances & my relationship vs a potential negative prognosis. Anyway, maybe a quicky history will help with some input...I'm 40, no children, HPV (gift from x-hus), HSV (gift from current boyfriend of 6 yrs), overall pretty happy, positive, mentally ready for anything, outlook.

I read that just because a cone biopsy comes back with a lesion insitu, that doesn't mean that there might not be invasive cancer elsewhere...if the HPV is directly related to this type of cancer, HPV isn't curable, so it seems to me that this type of cancer has a high risk for comin back somewhere else...???

Did anyone taking BC pills get to stop them? It seems that after I finish my pak this month, I shouldn't have to buy anymore ($30) savings!

Well, this is long enuf...I really appreciate any input/answers/info anyone else may have come accross...the more info I have the better...it's the way I am about everything, it drives my boyfriend crazy! Just another speedbump in the road of life...this one's just a little bigger! Looking forward to hearing from you ladies!

janilyn
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  #2  
Unread 12-13-2002, 11:26 AM
New here...

Hi Janilyn,

I'm glad they found your carcinoma in situ at an early stage and can treat it.

I also worked in the medical field for 20 years, and previously worked with my doctors! I was diagnosed with 1b cervical cancer after my cone biopsy followed by a radical hysterectomy. My understanding is that HPV is linked directly with cervical cancer. I honestly don't know for a fact whether or not it is linked with vaginal cancer, etc. or whether other locations would be from metastasis of the cancer. Sorry, I can't help you with that.

Following my surgery, my doctor put me on Premarin (estrogen only) 0.625 mg. I don't have any symptoms on it, so my perspective is "if it isn't broken, don't touch it!" and so I'm continuing the Premarin!

I hope you enjoy your holiday season, and before you know it your surgery will be behind you.

's
  #3  
Unread 12-13-2002, 01:03 PM
Thank You Gail...

That sounds logical...I think that was the point my doc was trying to get across when she gave me the path results on my biopsy but for each appt I've had, my condition has escalated to the next level and ended up worst case scenario! So I just want to be mentally prepared for the worst...don't want to go into shock or be in denial about anything! Thanks again and have a wonderful holiday!

janilyn
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  #4  
Unread 12-13-2002, 03:14 PM
New here...

Hi Janilyn,

I'm no expert, but it's been my understanding that the HPV virus is directly linked to cervical and vaginal cancers. I'm not aware of it being linked to any other cancers. If you've been reading this board you probably read that those of us with cervical cancers/pre-cancers have frequent pap smears done after the surgery. Here's an article I found which makes the connection.

Click here

Is your dr a GYN/Oncologist? If not, you might want to consider getting a second opinion with an one. You bring up some good questions and you should be getting direct answers.

My dr (oncologist) was somewhat "paternal" and didn't give me a lot of info but I didn't ask any questions.....I didn't find this board until after my surgery. Once I started asking questions he was very good about talking it all out.

Good Luck to you!

  #5  
Unread 12-13-2002, 04:19 PM
New here...

Hi,
There is a very small possiblity of cancer reocurring on the vaginal cuff due to the HPV. Your doctor should perform regular paps (vault smears) after surgery. I had the smears every 3-4 months for the 1st year and now I go every six months. I have not heard that HPV is linked to other cancers. Your prognosis is excellent that the hyster will cure it all and it won't come back. Good luck!!

  #6  
Unread 12-13-2002, 05:10 PM
Thanks Ladies!

Hi All...excellent articles & info provided, thank you!!! My doc is a DO (no, not a doctor of opthalmology!) & she did say that I would need to see a GYN/ONC if any additional cancer was found but she know's that money is an issue for me. I only work part-time, have no bennies or short term disability! Fortunately I am paying for an individual BC/BS PPO plan that should cover most everything after I pay my deductable ($1000)...and thank god for trust funds, otherwise I would really be be in trouble! How did I get myself in this mess anyway!?!?

When I meet with her, I will question her qualifications for taking some additional tissue samples from the other surrounding organs (if she's planning on using a laparascope)...she is going to try to do everything vaginally...do any of you know if additional tissue samples can be obtained without using a laparascope, from the bladder, lymph nodes, rectum, ovaries, tubes, etc...??? I guess I just want her to do as much as possible, while she's in there, so that I know as much as possible and I'm sure she's conferring with an oncologist...so far, she seems to be doing everything by the book!

What do you think? Am I crazy??? I sure feel kinda crazy!

janilyn
  #7  
Unread 12-13-2002, 05:32 PM
New here...

I did not know that DO's did cone biopsies. I used to have one but I went to a gyn for all gyn matters. If there is any way financially that you can swing having a gyn/oncologist do the surgery I would. Perhaps there is a local clinic? Try and keep your options open.
  #8  
Unread 12-14-2002, 08:49 PM
surgery

I had ademacarcinoma - tumor size of golf ball. My oncologist/gyn did a total radical abdominal hyst including lymph nodes. It is my understanding that he felt it was necessary due to the cancer. Wanted to go in and look around as it were. I agreed. I would get a second opionion about the vaginal hyst.... just my opinion. Can't hurt. Would hate to have them miss something or for you to worry forever about them getting all of it.... I go for my 3 month on Monday and am nervous, but somewhat confident that all will be fine because he said they got it ALL. Just my thoughts. Good luck to you. It will be fine. Aren't you glad you caught it? Spooky huh? I have never, ever been so scared....
  #9  
Unread 12-14-2002, 09:30 PM
Hmmmm

Hi Again Ladies:

My DO works with 3 OB/GYN's & I never realized that DO's did this type of stuff either! You have all definitely made some important points & have me thinking! My appt w/her is on the 24th & I will ask her what would be involved to request that an oncologist be present...it seems that some of the other ladies had an oncologist assist their GYN's in their surgeries. With all the info you've given me so far, I think that would make me feel much more comfortable! I hope that my Doc isn't the type to get insulted by this type of request...I would hate to Honkerblonk someone off that's going to be ripping out some of my organ's!!!

Yes, I am very happy that they found the cancer at such an early stage! My Doc told me that it is very difficult to find this type of cancer so soon & although my initial pap came back with some abnormal cells, my follow-up to that pap, along with some uterine tissue samples all came back normal! So she actually based & justified doing the cone biopsy from the first results. She must be consulting someone with some level of expertise & she really seems not to be taking any chances with me. I guess I will have to wait till my preop appt time to find out details & voice my concerns of possible cancer elsewhere & wanting everything checked while she's in there yanking things out. I will also press the issue of having an oncologist assist during surgery...I really don't want to go thru having another complete exam by an oncologist, if she's already been conferring with one...so I will need to find out!

Leslie, best of luck on your Monday appt, my thoughts will be with you & you will be in my prayers! Let us know how it goes!

Thanx again ladies, you are all 's & I appreciate being able to hear your experiences as well as soak up your knowledge! Have a great rest of the weekend!

janilyn
  #10  
Unread 12-16-2002, 04:58 PM
New here...

Welcome, Janilyn!

Well, it sounds as if you're getting quite a bit of good input here. Yes, it is true that just because the cone comes back as not invasive doesn't mean that they won't find invasive cancer in another location on your cervix. I don't think that happens very frequently, but I know that it can happen. But I'm keeping my fingers crossed for you! The recommendation to see a gyn/onc is a good one, and well worth your consideration.

As far as the pill, well, if the reason you are taking the pill is to prevent pregnancy, then you won't need it after your hysterectomy. If you're on the pill for other medical reasons, then you will want to discuss this with your doctor.

HPV is linked to some other cancers including vaginal cancer, bladder cancer and cancer of the mouth and throat. Keep in mind that these tend to be low-incidence cancers (it's very unlikely that you would get them). Vaginal cancer in particular is considered to be quite rare. The most common place for these cells to show up is at the vaginal cuff (where the top of the vagina is sewn shut after your cervix is removed), but they can also show up anywhere in the vagina. You might like to ask your doctor to "vinegar test" your vaginal walls just to be sure nothing is there. I had a pretty hardy patch growing on the vaginal wall right at the entrance, and that area was removed when I had my TAH.

It's very important that you keep your immune system in tip-top shape! The reason we have problems with dysplasia is because our immune systems (for whatever reason) don't seem to be able to keep the HPV at bay. It is estimated that at least 50% of women carry this virus in one form or another, but most have no symptoms or problems with it. There is also some research that shows that HPV and HSV both thrive better when both viruses are present--they really end up draining the immune system when they are "sharing quarters". So, eat well, take a multivitamin, get plenty of rest, keep your stress to a minimum, get some exercise, and pray or meditate. All have been shown to help your immune system in one way or another.

Oh--will you be keeping your ovaries? I was able to keep mine and so glad that they were considered to be healthy at the time of my surgery. It's just nice to not have to worry about taking hormones right now!

Good luck, Janilyn! I hope all goes well for you, and we will look forward to seeing you around the boards!

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