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Vaginal Tumor Found, need any info possible Vaginal Tumor Found, need any info possible

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  #1  
Unread 05-30-2003, 04:59 AM
Vaginal Tumor Found, need any info possible

Hi

After a recent exploratory, the doctor found a 2x3x1 tumor on the internal, back, vaginal wall. Half way up, (so far it has not gone through to my colon etc) I joke with my husband that since it's the size of a small mobile phone, it must be the mobile phone that I lost last year, and not cancer! haha, but one can only wish. Anyway, the doctor says it has not spread (thank God) and I have a doctors appointment next Friday to discuss treatment (poss. Radiation and Chemo)

I am originally from Texas but live in Europe, so due to the language problem, I'm having a really difficult problem getting information. I asked the doctor how bad my tumor is, what level etc, and was told 'its serious'. I asked will I get better, since it has not spread, his answer 'it's serious'. So I imagine you can understand my dilemma. To me it sounds rather easy to get rid of, but then again... My family has a long history of cancer.

I would really appreciate hearing from anyone out there who has had a similar experience.

Thanks so much!

Maria

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  #2  
Unread 05-30-2003, 06:09 AM
Vaginal Tumor Found, need any info possible

(((Maria)))

It's hard enough to hear about stuff like this in your own native land in your own native tongue. I can't imagine how frightening and frustrating it is for you to be someplace else. My first suggestion is that you find a translator and take this person to the doctor with you. It should not be difficult to find one. The hospital there should be able to help with this. It is SO important that you get good information. It's important that the doctor feel comfortable expressing him/herself (if English is difficult for them, then you might only be getting 1/2 the story you would get if someone fluent in English were talking to you). Also, you can ask all the questions you want and know that the doctor is understanding what you are asking.

Vaginal tumors are rare. Depending on the size/stage of the tumor, surgery might be considered to remove the tumor. How fortunate that it has not spread to your colon! Or they might try to treat it first to shrink it and then see if they want to remove anything that remains. Is your doctor a gynecologic oncologist? They really are the experts when it comes to female cancers, and they know all the current treatment and surgical techniques. There's not a tremendous amount of information out there, because there just aren't very many women who have had them. We do have a couple of women here, though, so I assume that they will be along shortly to share their experiences.

I wish I had more information for you. My vaginal cancer was noninvasive, so they simply removed the part of the vaginal wall in question (posterior wall just inside the vaginal opening), and then I required no more treatment--just close follow-ups.

Good luck, Maria! Please let us know how you are doing. I will keep you in 'er.

  #3  
Unread 05-30-2003, 06:42 AM
Vaginal Tumor Found, need any info possible

Thanks for the very fast response, it's very much appreciated! I live in Holland and fortunately my husband is Dutch and can come with me sometimes. He has been trying to translate, but for some reason, there are still communication problems as they try to communicate to me in English even though he is there. Fortunately he will be coming with me on my next visit. I asked him to try to have the doctor do everything in Dutch and then he can translate to me and I can ask questions. For the longest time, he did not understand why I felt there was a communication problem, as the Dutch speak very good English, however the problem is that any time one has to speak about business or medical terminology its always easiest to do so in your own language. So, I'm going to forever have to battle. *sigh*
From what I read, the tumors are rare so I'm having an even more difficult time finding information, so I'm very hopeful that this sight can help me. Especially with personal experiences. The medical system, though very good here in Holland, is very different and the communication problem just adds to that.
I was first diagnosed by my gyn. doctor who looked terribly frightened when she found it. She did an immediate biopsy. 2 days later we found out that it was confirmed as cancer. I was then referred to a large medical university hospital and their gynecologist there. (I still don't understand the reason for that) The gyn there checked me and then ordered an exploratory, which was done last Monday. (to add to my fright, the new Gyn Doctor was on holiday and was unable to be there) I met with another doctor after the surgery who told me the size, and said it had not spread from what they saw. By the way I had a CT scan last week but have not received the results. So I'm still scared, as perhaps there might be something on the CT? Perhaps this guy was just reffering to the exploratory. Anyway, he said the treatment plan was chemo-radiation as and from what I understand, if that does not work, they will have to remove the tumor. I was told I would not be 'functional'. I guess that means partial hysterectomy, vaginal canal removal...(they don't seem to rebuild things here, which is frightening) Thanks for telling me about how what the treatment is supposed to accomplish, that does help.

I have not bet with an oncologist yet. I am wanting to have a 2nd opinion, but living in a foreign country I don' t know if that's possible. The only person I have close to me is my husband and we have only been married for a year. Like most partners he is not handling it well, and has only recently started to get a bit involved but not to the degree I need him to. From what I read men have a difficult time expressing feelings and dealing with this sort of thing. Since it's of such a personal nature too, I have fears with him on that...

Thanks for being there! Gosh, I sound like such a complainer... I'm so sorry, normally I'm full of fun and humor.

Hugs,

Maria
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  #4  
Unread 05-30-2003, 07:27 AM
Vaginal Tumor Found, need any info possible

More 's Maria!

I'm still going to encourage you to request a professional translator. If your husband is not medical (medical is its own language) and if he is distressed by this situation (which I'm sure he is), then it really will be in your best interest to have one. That way your husband can relax and concentrate and you can relax and concentrate. I use translators all the time (Spanish and American Sign Language). While I'm fairly fluent in ASL, at important meetings I still prefer the interpreter.

Anyway, some things for you to think about and ask.

1) What exactly does "functional" mean? You deserve to know this. Does it mean hysterectomy, therefore no childbearing? Does it mean there will be no vaginal canal, therefore no intercourse? What exactly does it mean?

2) Can they remove the tumor without removing the entire vagina? If it is a fairly well-defined tumor, they might be able to remove it and some surrounding tissue, treat the area with radiation, and leave you with a vagina. Vaginas are very stretchy, and even if you end up with a small one, it might stretch back out to normal size. (I had a fairly large area removed, and while it took some months to get things back in order, I am happy to report that all is in working order ).

3) If the vagina must be removed, when can you have a reconstruction done? We have had at least one woman here who has had a reconstruction, and she seemed pleased with the results.

4) A second opinion is always in order. Please request one. Hopefully the system over there will allow it.

5) What kind of tumor is it? Ask for a name if they can provide it--it might be easier for you to find info about it that way. For example, is it a squamous cell tumor?

Waiting on those CT results is tough. Hopefully they will come back showing that nothing has spread and that this will be an "easy" situation to remedy.

Good luck! Please keep posting more questions--we're happy to help you think of things to ask!

  #5  
Unread 05-30-2003, 08:07 AM
Vaginal Tumor Found, need any info possible

Maria,
I had an 8 cm vaginal tumor last summer that had invade the rectal wall, I had a pelvic eexnteration which is a raical hysterectomy, plus removal of 6 inches of colon. I have a temporary colostomy which is scheuled to be reverse next Friday.
Because more cancer was foun in my small intest6ines I went thur 6 rounds of chemo. It was an ordeal, but doable and I'm a wimp! My latest scans show no trace of cancer and I am feeling great. Your case doesn't sound near as bad as mine, but I agree with Jeannie, please get a translator, and ask questions, like why don;t they first get the tumor out of there?
  #6  
Unread 05-30-2003, 08:33 AM
Thanks for your help

Debbie and Jeanine

Thanks for the information, it's so very helpful. You both have had problems but have overcome them. I'm so thrilled! I was thinking, in my original post, I was trying to mention the size of my tumor and translate it to inches. I'm awful at that sort of thing, but cm-wise it's 5 cm x 4.5 cm x 2 cm. Don't know if that matters. Compared to Debbie's it's nothing and yet she has made it! Such an inspiration!

Thanks for inspiring me!

Hugs

Maria
  #7  
Unread 05-30-2003, 01:35 PM
Vaginal Tumor Found, need any info possible

Dear Maria,

While I do not have the same kind of cancer, my heart goes out to you -- especially since you are so far from home. I've been to Amsterdam and love the Netherlands in general, but I know that I would've been pretty confused if I found myself needing to make use of their medical system.

If they don't like to rebuild stuff (as you say), is there any chance that you can avail yourself of German or American doctors? I'm not clear on how insurance might work for an expatriate. Would it be possible for you to come home for that type of surgery (if they don't offer it where you are)?

To Jeanine's wonderful list of questions, I can add only one: Ask them what stage it is (if they know). The stage will be important in determining your course of treatment, but it may not be able to be determined without surgery. Did they say that they would be unable to remove the tumor until they put you through radiation and perhaps chemo?

You were probably referred to the large university hospital because they have more doctors and better resources. It's a good thing your existing doctor referred you. I go to a large medical center myself, and I have been happy with the collaborative nature of my care. I would rather have six doctors than just one. More heads = more discussion = more experience = better treatment for me.

I wish I knew more about your particular condition so I could be more helpful. Just know that there are a lot of people thinking about you from afar. Please let us know what happens when you meet with the oncologist. A gynecological oncologist is a must.

I know you'll find a lot of support on this board. I was just diagnosed in late February, and this board is now a daily part of my lfe. I don't know what I would do if it wasn't for all the great people here helping me along.

s!
  #8  
Unread 05-30-2003, 05:51 PM
Hi Maria..

Fellow Texan here...

I'm sorry to hear your story, I don't have the same kind of cancer as you, but this with this last recurrence, I did have a tumor that starts at the back of my vagina, between my rectom & bladder that was hitting my pelvic wall.

I did have surgery to take as much out as possible, actually, they were going to do a total pelvic exeneration. (which is taking everything out of the pelvic area, including the vagina. They were going to rebuild one for me using a muscle from each inner thigh) Anyway, I didn't have that surgery since they couldn't get a clear cut around the tumor, because it was connected to my pelvic wall, so they just took the tumor, and scraped as much from my pelvic wall as possible.

Now, I'm undergoing chemo therapy, it's tough sometimes but it's very doable. I too had radiation, which is very very doable, much easier than chemo in my opinion, but I had them a year apart.

There are some that had done both at the same time. There are a lot of women on this board that has gone through so much, you can practically ask anything and someone has been through it, or can point you to the right direction to get some more info.

I have to agree about getting a gyn/oncologist, they really are the experts.

Be glad, you're not here, it was 99 today, and it's only May.

's and ers to you...
  #9  
Unread 05-30-2003, 06:12 PM
Vaginal Tumor Found, need any info possible

s Maria

You have certainly received alot of good advice. But if I were you......
Is there any chance you could come back to the states, if just for a second opinion on surgical options and treatments. I just hate to think of you having regrets in the future. Cancer is often about making decisions that will leave us with the least regret in the future. You know, coulda, woulda, shoulda?
Best wishes to you.

karenann
  #10  
Unread 05-31-2003, 12:08 AM
Vaginal Tumor Found, need any info possible

Thanks all for the wonderful support! You are all great.
The information has been very helpful.

Tammy, my hometown is where you live and small world, I do most likely the same kind of work you do.

Once again all thanks for your help. In response to me getting treatment in the US, my insurance most likely will not allow that. But I will be asking alot of questions for sure. I wish I could get treatment, or even a 2nd opinion in the US but can't afford to do that. Because with the airfair, and then trying to find a doctor and then the doctor most likely having to run tests (where the real costs are) the cost would be terrible, Im sure. One blessing here, I don't have out of pocket expenses here at all. But alot of confusion. haha...

Maria
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