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Still scared and REALLY confused Still scared and REALLY confused

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  #1  
Unread 12-22-2001, 02:53 AM
Still scared and REALLY confused

Hello All! I haven't posted in a while. I had my vagina lasered on August 23rd and shortly afterward I took a trip to South Carolina to visit my daughter and her husband and to welcome my grandson, Mathias. I just got back last month and just had a follow-up PAP smear after my laser surgery for VaIN I. And guess what! I got a call from my doctor with another bad result. It's still VaIN I. The laser was totally useless, worthless, and ineffective (as far as I'm concerned). So, I don't know what to do anymore.

The nurse got my doctor on the phone to talk to me about this futile attempt to irradicate this nuisance. He told me that there isn't anything more he can do at this point, except to play the "wait and see game" and to come in every 4 months for repeat PAP's. He said that if it goes into the severe stage, then "we'll laser it again." I AM NOT SATISFIED WITH THIS ANSWER!!!! This just doesn't make any sense! What is going on with me???? He just lasered it out (supposedly), and I can understand that this thing can come back again, but I would think that maybe somewhere a year or two down the road - not a few months after treatment.

I'm starting to question his competence. Maybe he doesn't know what he's doing. Maybe he keeps on missing the lesions, or not lasering a wide enough area. I'm afraid to play the wait and see game. I don't want it to take the chance that it might go into severe dysplasia. He even mentioned excising my entire vagina, which he said is pretty horrible and wasn't recommending it at this stage. So, at what stage, then? When it turns into severe dysplasia, or carcinoma in situ? Is that what I am looking at? That my vagina will be surgically removed and the scar tissues will close it up altogether? I don't want to get to that point, and I don't know what to do. I already was diagnosed with PTSD with anxiety disorder and depression and if the wait and see game gets me to the point where I'll have to have what little of me is left removed, I probably WILL commit suicide.

I don't know what to do, or think at this point. I was wondering if any of you ladies have ever heard of anything like this, or if any of you know of anyone who has had persistent dysplasia and what the outcome was, just so I have some mental notes for comparison's sake. I did set up an appointment with another doctor for January 14th - 3 years to the date after my hysterectomy for a second opinion, but I am very nervous. I'm afraid he's going to tell me the same thing. I don't want to wait. I WANT THIS THING OUT OF ME!!!!! I read that this is very curable at this stage, then why am I not able to rid myself of it?? Then I start thinking about my track record so far - if it goes into the severe stages, I'll probably be fighting severe dysplasia and that's like playing Russian Roulette. I don't want it to go into cancer, because I know I probably will never survive the treatments. As it is, I'm extremely sensitive to all kinds of medications and can't even stand the side-effects of antidepressants, let alone the kind of anti-cancer drugs they use to kill cancer.

My doctor mentioned this drug called 5-FU, or FU-5; but he said he didn't want to try that with me. I wonder what that might do. Any feedback, or suggestions will be so much appreciated. My health seems to be very good, except for this nuisance. Help!

Alexa
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  #2  
Unread 12-22-2001, 06:04 AM
Still scared and REALLY confused

Dear Sister,

I'd be upset too, if I were you! Are you seeing a gyn-oncologist? I don't see the harm in a second (or even third) opinion and my experience has been that you can get these appointments pretty fast if your primary care doc or regular gyn is willing to scream!

Best of luck to you in getting some answers to your questions and your fears resolved. I pray that one of your docs will sit down and have a good look at your records fast so you don't have to worry through the whole holiday season.

Good wishes and a big cyber hug

Dorrie
  #3  
Unread 12-22-2001, 08:25 AM
Still scared and REALLY confused

(((Alexa))))
I am so sorry to hear that you have been through so much with this.

I dont' know alot about VaIN, but I totally agree with Dorrie that you should check out as many opinions as it takes to get the answers you are entitled to.

I am glad to hear you have set up another appt. with another Dr. for January. Make your list of questions to have ready for this doctor, and make sure they explain everything to your satisfaction. You are entitled to that.

My first thought as well was whether you are being looked after by an gyn oncologist or a regular gyn. If it were me, thats the doctor I would want to be seen by. They are the experts and in my own experience they do a great job at explaining everything as they know how scary this all is for us.

All the best to you Alexa, and please keep us posted on how its going.
Hugs,
Maria
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  #4  
Unread 12-22-2001, 01:07 PM
Gyn Oncologist

I also agree that you should be seen by a Gyn Oncologist. You can locate one by contacting your local teaching university hospital or by going to the website www.ovarian.org and do a search for doctors. This site has a good link to find a gyn oncologist in your area. They treat all types of gyn cancers. If you are in a metropolitan area, there may be several to choose from. If not, you may need to travel a bit to get to one, but it would be well worth your time. If you need help finding one, you may e-mail me and I will be happy to assist you. Just let me know what large city is closest to you and any other cities nearby which may have large hospitals.
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  #5  
Unread 12-23-2001, 05:47 AM
Still scared and REALLY confused

{{{Alexa}}}

I am so sorry you are going through this. I agree with the other girls that a visit to a gyn/onc is certainly in order.

Now please rember that I am no doctor, but I will share some information with you that might help you a little bit. Part of my vagina was excised for carcinoma-in-situ, so I am also worried about what the future holds for me. BUT, try to keep in mind that at VaIN 1, only 1/3 or less of your cells are abnormal. That means that at least 2/3 of them are still normal. Which means that your body is still able to make some normal cells, it just isn't catching and destroying all of the abnormal ones. Do you know what's causing this? Have you been typed for HPV? I was never typed, my doctor and I are just assuming that that is what I have. There are estimates that at least 50% of women are carrying one form or another in their genital tracts, it just seems to cause problems in a few. But regardless of if you have that or not, there are some things that are always "good medicine". Find a doctor you are comfortable with and stick with him/her. Eat well--this is very important. If your body is not destroying all of the abnormal cells, then your immune system is not working quite right. Check with your doctor about appropriate vitamin supplements for you. A well-nourished body takes care of itself better. And even if it doesn't fix the problem, maybe it will keep it from getting worse. Try to keep your stress to a minimum. It sounds like you already have a lot of stress in your life, and stress really zaps your immune system. Try to exercise regularly--even just a walk--if that is OK with your doc. Depending on your beliefs and lifestyle, you might want to try prayer, meditation, and/or yoga. All of those things are found to reduce stress. I do all 3 and it really does help. We can beat this, Alexa! We can! We just have to believe it.

Take care of yourself. I hope your appointment goes well in January.

  #6  
Unread 12-23-2001, 11:43 AM
Still scared and REALLY confused

I agree with the specialist doctor! You need to see someone who is familiar with these problems and knows how to handle them accordingly. If your doc now is a gyn/oncologist, then you may consider a second opinion. You really need to feel secure and comfortable with your doctor! I wish you the best and hope that you will keep us all updated!! God bless!!
  #7  
Unread 12-23-2001, 09:34 PM
Still scared and REALLY confused

{{Alexa}}

I'm so sorry you are continuing to have this worry. I can't add anything to what the others have said, I wholeheartedly agree!

Its never a bad idea to get other opinions, as many as it takes to get some answers that will help ease your mind.

I hope you'll be able to relax and enjoy the holidays and hope your upcoming visit will give you some answers. Please keep us posted on how you are doing.

{{hugs}}

Vicki
  #8  
Unread 12-25-2001, 02:25 AM
5-FU Cream and Question for Jeanine

All of your posts have been very helpful to me and very encouraging. I want to thank all of you, wonderful ladies, for your concerned input.

Although I know I don't have cancer right now, but it's knowing that I'm walking around with a potential time bomb inside me that may, or may not explode into full blown cancer some day. If it goes into that, I don't think my prognosis will be that good, because of my track record of recurrency with the dysplasia.

I don't know. Maybe I'm making too big a deal out of this, since it is mild dysplasia; but I don't understand why it doesn't go away. I've been treating it, going for exams; and it's not going away. My doctor even mentioned using 5-FU cream, but is reluctant to try that, because he says it's a very strong chemotherapy cream. I don't understand him. Wouldn't it be better to treat the dysplasia with that, while it's still mild than to wait for it to get worse? Has anyone had any experience with the 5-FU?

It seems like every Christmas I have to deal with something. Last year, I was fighting a detached retina and was laid up for months from a very major eye surgery.

My question to Jeanine is: How did your condition progress into carcinoma in situ? Did it just pop up, or did you start off with mild dysplasia and it progressed into that? If it progressed into the carcinoma in situ, how long did it take to get to that point? Your explanation about 1/3 of the cells being bad in mild dysplasia was very helpful to me. At least, now I can picture it in my head; whereas before, I was clueless.

To answer your question about do I know what's causing this is - no. Not really. I haven't been typed for HPV, but that's what my doctor is assuming is causing this. My husband was checked by a urologist, just in case I gave this to him, or the other way around - and he's clean. I read on a web site that men who have partners with dysplasia caused by HPV, also have it. I was, at least, relieved that he's OK.

My doctor doesn't seem to want to do anything. I've asked him several times to find out what kind of HPV I have (if I even have it), since there are those that are high risk and low risk. He told me that such a test would tell him ABSOLUTELY NOTHING.

He makes me feel like he's done all he can for me at this point and all that is left to do is keep checking it every 4 months, do a colposcopy once a year, and then treat it with another laser when/if it goes to severe dysplasia. I have even asked him to find out what my hormone level is, since the HRT he's given me isn't helping with the hot flashes. Since my hysterectomy, I haven't slept normal. I can't fall asleep, and once I do, I can't stay asleep. He doesn't want to bother checking my hormone levels, because he says those tests are inaccurate. You can't tell anything from them. He says the hormone levels fluctuate throughout the day and the results (like typing for HPV) tells him ABSOLUTELY NOTHING. He even told me that there is no reason why I'm still having hot flashes. Maybe I have cancer somewhere in my body, because cancer can give you hot flashes. I told that "Einstein" that I might think that to be true - however, my hot flashes started right after my hysterectomy. Hello, McFly - hysterectomy then hot flashes!!! Duh!

I have an appointment with what I think is a very good women's health clinic, located in a large city about 40 miles from where I live. I don't mind the travel. I just hope we don't have a blizzard, when it's time for my appointment. I live in Maine. This clinic is affiliated with some of the best doctors here (I don't know if that's saying much, but we'll see). I know when my daughter got into a serious car accident and almost died, she was transported to Maine Med, because she had a brain hemmorhage, and I was told they have the best brain surgeons there, just in case she needed one. I know they have oncologists and gyn specialists there, too. At any rate, I don't think my experience will be any worse than with the quack I've been going to. But then again, who knows? Maybe this is standard procedure.

I'll keep you all posted, and thanks for listening.

Alexa
  #9  
Unread 12-25-2001, 06:49 AM
see a gyn onc

Catiiz,

Going to a multispecialty clinic is a good idea, but I would call tomorrow and see if they can SPECIFICALLY squeeze you in to see their gyn oncologist at your appointment. Given that you have an 80 mile round trip, you ought to ask for that. I know if I were you and got to the clinic and then they told me I had to come back in a week to see the "real" specialist, I would just break down anc cry.

Some of us gals need a push to assert ourselves. I know I am being monitored for ov ca and although all my scans (ultra, pet, ct, mri) have been negative, my blood levels continue to rise. My surgery is set for late January and after the last rise (I got the news yesterday) I have had enough and am getting it moved up. Yes, I did need to get pushy, yes it did lead to tears later, but it is my body - and my peace of mind. I will need to run around tomorrow to get all the paper in the right place, but I will get a moved up date.

SO, if it is answers you want, I'm not a doc, but I would strongly suggest you go tomorrow and photocopy all your records. Call the new clinic and beg to see a gyn onc too (believe me these guys can squeeze you in) and then write down all your questions. You deserve answers girl and I would also suggest you bring someone with you - preferably an assertive person who really loves you. When we are sick sometimes we feel so vulnerable that it is hard to really speak up. I know I'm afraid that if I speak up too loud the doc will abandon me. Intellectually, I know if is nonsense but I still can be afraid.

Lots of love and strength to you.

Dorrie
  #10  
Unread 12-25-2001, 09:08 AM
Still scared and REALLY confused

Hi Alexa, sorry I havent replied sooner but I am on holidays and can only access computers now and then .

This is my opinion only but.......... if I were you I would try to see an oncologist. You seem to be having the same problems I did and I allowed my gynocologist to do all the procedures and nothing seemed to work. He finally realized that what he was trying was futile and did refer me to an oncologist , my VAIN had progressed to stage 1A cancer. So please dont just see what will happen. It cant hurt to get another opinion. In hindsight I wish I had of been more assertive and gone to my oncologist sooner.

Sometimes this type of abnormality can be very stubborn.

I am always available by email , if you need to talk. We are here always too, to comfort, hug or listen. Never forget that.

I have survived. You will too. We are with you every step of this road you are walking right now. Much love always x x x
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