Anyone have DES info?

• By its_my_goliath
• Posted May 13, 2009 at 1:22 pm
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I don't know anything about DES but you should have info on your cancer. They would have tested it after surgery, I think.

Or get your pap/colpo reports to see what type of HPV you have.

If you have clear cell you'd probably have a more aggressive type of treatment ahead of you I think (chemo/radiation).

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• By jayelleye
• Posted May 13, 2009 at 3:54 pm
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Thanks for this!

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• By chickracer
• Posted May 14, 2009 at 11:52 am
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Hi. Absolutely the DES could be the cause. You are right in saying that it can cause clear cell adeno ca. I would talk to your dr. and clarify things. They are very quick to jump on the HPV wagon, and while it is true that HPV causes the majority of cervical ca, there ARE some exceptions (neuroendocrine, DES, and family ties-though they still deny this one).

You can also have BOTH. In a case study of a woman with adenosquamous ca, the squamous cancer cells tested positive for HPV, yet the adeno cells DID NOT.
(Gynecologic Oncology, Volume 97, Issue 3, June 2005, Pages 976-979).

If your doc is too closed minded to hear you out, tell him you want to see your HPV test results on PAPER. Not just an assumption based on what the medical profession gets shoved down their throats. Then get a new doctor. You need one that is on your side when it is your life at stake (trust me on this one. Read my profile...)

From what I have heard and learned (this is not gospel, just info I have researched and from my own experience) Adeno ca can be more aggressive than the run of the mill squamous cell ca.

Be very careful what you look at on the internet. There is alot of crap out there, but empower yourself and gain as much knowledge as you can (peer reviewed articles are best...that means real studies, not just someones blog). Don't leave it in their hands. Sorry to ramble, but your dr. makes me nervous. Been there, done that.

http://www.deslaw.com/clearcell.htm
I found this link, you might want to have a look.

I wish you the best of luck, and hope I didn't scare you (boo!) with this onslaught of info. I am just sick and tired of women being scared to talk to their dr's and trusting every word that falls from their lips, then ultimately paying with their lives...

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• By jayelleye
• Posted May 14, 2009 at 12:30 pm
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This is what I needed to hear, thank you so much! I will talk to my Doc, I just wanted to have the info before I got there as I get flustered and nervous when at the clinic...its true though, although I truly trust this Dr. I also felt like I wasnt given any info, on the path, the op, or the aftermath!

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• By Nurkao
• Posted May 15, 2009 at 9:50 am
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Jayelleye:
So sorry to hear that you have Stage 1a1 & a hysterectomy at such a young age. But it does sound like they got your CC at an early stage. You should have a good prognosis.
I too had clear cell adenocarcinoma. I was diagnosed in January '08 with 1B2. My mother also took DES when she was pregnant with me. But because I was 58 at the time of my diagnosis, it has been very difficult for me to get the information I need about my mother & my mother passed away in 2002.
My sister, mother, grandmother & aunts all had hysterectomies at an early age - in their 20's, 30's & 40's. They did not discuss the reasons for their early hysterectomies with me so I don't know if it was because of DES or not.
I had a radical hysterectomy, 6 weeks of chemo - once a week, & 25 external & 3 internal radiation treatments. The chemo was because they found 2 positive lymph nodes.
I do believe that clear cell is a more aggressive cancer. So far I am over one year survivor. I have some minor problems but can deal with most. But most of my current problems are because I have the underlying problem of fibromylgia.
Because I moved during my treatment I have had several different doctors & all them are not on the same page - several have said my CC was caused from DES but my original doc said no. So the docs don't even agree on this. As another person who posted to your question - a lot of docs & people jump to the conclusion that all CC is caused by HPV.
And as one person on this site stated: There's a BIG difference in the pathophysiology of diseases - what causes them, risk factors, outcomes, genetics, etc.
There are specialist gyn/oncologist who deal with DES CC but I don't know if where you live is a large enough city to have these specialists. The closest city to me doesn't even have a gyn/oncologist so I go to 4 different docs for my follow-ups.
Here are a couple of sites that may be of interest to you:
The National Cancer Institute has a webpage for DES: http://www.cancer.gov/cancertopics/factsheet/Risk/DES
And there is also this website: http://www.descancer.org/
I hope this helps. My thoughts & prayers are with you at this time.
Nurkao

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• By jayelleye
• Posted May 15, 2009 at 10:58 am
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Thank you, am waiting for the path from my hyst, I will do more research in the meantime and go prepared to my oncologist, I really appreciate all the info and advice, this site is amazing..

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• By tahichkad
• Posted May 16, 2009 at 9:28 pm
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Hi! And as for HPV causing all CC ... it doesn't. It causes virtually all of them (95%+) but not all of them. I didn't shed HPV on 2 paps, a colpo, a cone AND another biopsy.

Good luck researching the DES angle!! Be well :)

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• By AplusinATL
• Posted October 26, 2009 at 12:11 am
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I have small cell neuroendocrine carcinoma of the cervix and my Dr specifically told me that it is not related to HPV, they don't seem to know where it comes from...so definately be confident when talking to your Dr that not all cc is HPV related...I heard 95% are related to HPV same number tahichkad posted...if your DR specifically said all cc is HPV related then I would look for new DR...if however, he was just vague, or was saying you're type of cc is related to HPV then you'll need to decide whether you can get better information out of him and whether you are confident in his judgement...you're life is in his hands so don't be afraid to move on if you need to...

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