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Help !! Too young for this :( Help !! Too young for this :(

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  #1  
Unread 04-04-2004, 03:45 PM
Help !! Too young for this :(

Hello Im Katia and in need of some serious support. Im 38 now.. had 28 surgieries from 17 on... Doc wanted to do a hystorectomy but i was "too young to snorfledoodle " so they took everything out in bits... 9 surgeries later my uterus came out for my 27th bday. and put on HRT.. no cancer in our family, no worries they told me.. flash forward 9 years and im 36 with 2 wonderful teenagers and i have breast cancer.. 4 surgeries and a Double mastectomy alter i had no choice..... the cancer was fast growing, aggressive and i needed to save my life. Flash forward 2 years.. im 38 and thanks god im cancer free... my kids are great, hubby is wonderful and i feel somthing falling out of the vagina.. go to dr... Acute vaginal atrophy ... the walls of the vagina have collapsed.. they are thinner than paper, bleeding and the canal is so tight and swollen she cant even get a finger up there without me crying...i cant have estrogen or anything she could give somone who hasnt had cancer... there isnt anything she can do... sex might help but no room for even that up there. so my breasts were taken by cancer, my usterus and ovaries, cervix and tubes in my 20's and she tells me she is sorry... i am too young for this... where does that leave me ? im a faithfull lady so i hold on to God but with ALL my female organs out and the one last one shutting down and not working im in mourning. I am lucky to be alive i know this and i praise god everyday but im sad and not sure that ill ever be normal again and be able to love my hubby the way god intended... so i seek help from you all and hope im not alone yet i wouldnt wish this on any of you.. thanks for listening to me i only need some hope thats all... thanks
Katia
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  #2  
Unread 04-04-2004, 04:08 PM
Help !! Too young for this :(

Hi (((Katia))) I'm so sorry you have had to go through so much at such a young age. I've moved your post over here to our Aching Hearts forum so the ladies here can give you some much needed s and support.

You are in such a tough spot, not being able to use HRT. But will your DR let you use something like Estring? I have had breast cancer too but both oncologists I consulted said they would approve of Estring or vagifem. Estring is a plastic ring you insert vaginally and it releases just a tiny amount of estrogen slowly, not enough to affect your whole body but enough to help with the atrophy. It sounds like you've had so much atrophy you might even have trouble getting an Estring in there.... there is also vagifem, which is a tiny pill you insert with an applicator. It does the same thing... your DR can prescribe it daily or weekly or whatever you need.

If your DR absolutely won't let you use even Estring or Vagifem then maybe some other non hormone alternatives? What about Vitamin E? There are even Vitamin E suppositories available OTC, or it's probably cheaper to have a compounding pharmacist make some up for you.

Then there is a new drug called Tibolone (brand name Livial) that has been very helpful to ladies in the UK who cannot use estrogen... it isn't available in the US but it's coming, I just wanted to offer you a little hope. I will be looking into taking it myself when it gets here. We do have a member who is already using it in the US, getting it from an offshore pharmacy.... sometimes we do what we have to to find relief.

You are definitely not alone, and I'm glad you found us. There are several forums here at Hystersisters that you might find really helpful. We have a Cancer Concerns forum, and the ladies there are wonderfully supportive... also a No-Hormone Desert Oasis forum where they discuss non hormone alternatives to help with symptoms. If you go to the main Forums page you can scroll down and find how to get to all the different forums.

Also if you click on Resources at the top of this page, you will enter a wonderful library where we keep links to other websites with tons of helpful information. The cancer sections and hormone/non hormone sections might be good ones for you to browse. When you go over there, wave to the nice lady behind the desk for me, ok?

I hope you will feel at home here... everyone's situation is a little different of course, but you will find plenty of ladies who can relate to how you're feeling. I'm looking forward to getting to know you better!

s,
-Linda
  #3  
Unread 04-04-2004, 05:31 PM
Help !! Too young for this :(

dear katia,
I feel so sorry for you having to go through all this. I am glad that you have your family to stand with you through all this. And I am glad that you found hystersisters. I am sure you will find an answer to your questions, and I know that you will find love and support from this community. Just keep asking, someone will be able to help.
sending you lots of love and hugs,

akita
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  #4  
Unread 04-04-2004, 05:39 PM
to surferbabe and akita

Thank you for welcoming me. I really appreciate your advice. sadly i have had 2 opinions and all the things surferbabe suggested are not options as i had the breast cancer. The Vitamin E may help the pain but they dont feel it will help the issue bounce back so to speak. thanks for your support and friendship.. i am still kind of numb and a bit ... ok totally sad about this...in need of finding a way to get happy again... thanks so much for trying
Katia
  #5  
Unread 04-06-2004, 08:23 AM
Help !! Too young for this :(

Hi again, Katia. I know this is such a hard time for you, but please know that you're being kept in thought and prayer.

Welcome to Cancer Concerns--you'll find a great community of women here, much information, great concern, listening ears, and even lots of laughs (I think we laugh more here than anywhere else in HS!)

Please keep us informed and feel free to vent all you want--we're here for you.

Blessings.
Marlene
  #6  
Unread 04-06-2004, 09:22 AM
Help !! Too young for this :(

Katia,

Here is alink from Susan Love's site on breast cancer

http://www.susanlovemd.com/living/i_2_2_1_3.htm


She sort of agrees with your doc, that even vaginal estrogen is a nono, except in extreme cases, which yours seems to be

I've checked around my office here with a few breast cancer survivors and this seems to be a common complaint. The east coast where I live is pretty anti-hrt for breast cancer survivors, but a couple of the women do use small amounts of vaginal estrogen. Here are their thoughts

--the smallest dab every day for a week or two can start to reverse the atrophy.

--once the atrophy begins to reverse, decrease the estrogen and start using the non-hormonal treatments (vit e, replens etc). Cut down the vaginal estrogen to 1x a week - just a dab. Using it this way, the single tube (25 grams) will last about 6 months

My oncologist also prescribes compounded estriol cream, which is a very weak estrogen that is expected to have little activity on the breast

Dorrie
  #7  
Unread 04-06-2004, 01:04 PM
Help !! Too young for this :(

Katia,
I am so sorry! You have been through he** and back but are still alive and finding reasons to rejoice!

Didn't your doctor see this vaginal atrophy happening? I am surprised that she didn't offer some help before it got to this advanced stage.

While I didn't have breast cancer I did have radiation and chemo for cervical cancer. My doctor examed my vagina shortly after treatment and exams it again every three months. When he saw signs of thining of the walls he perscribed low doses of vaginal cream, premarin. I was also told to have sex frequently, or use a dialator to keep my vagina open. Your doctor should have warned you about this before it got so bad. At this point, I don't know what your options are, but I would certainly press the doctor to find out. Atrophy can be reversed and you can use dialators to begin to increase your vaginal opening. Your doctor should be offering suggestions to help you, not simply throwing up her hands and leaving you with no solutions! I am sure she realizes that it is important for you to be able to have internal exams and pap smears! If she is unable to offer solutions, then I would ask for a referral to a doctor who has more expertise in this area.

I hope that you are able to find some answers, either through your doctor, with a new doctor, or here.

Hugs,
Janie
  #8  
Unread 04-06-2004, 01:17 PM
janie

Janie
Thank you for your advice. I have seen so many doctors through the years for the menopause issues and cancer that i think the atrophy was the last thing on their minds. I agree that throwing up her hands and leaving me to my own devices was wrong as it really has left me so lost. I am not one to sit back and take what doctors say as gospel truth, i really feel that my life is in my hands and with support and advice from all of you and researchi am bound to find some type of solution. I ma reading and taking this all in and i cant quit now, i have never been a quitter.... sometimes you do get tired though and there is a time to cry and be upset and then its time to fight again...thank you for your insight.. it did help me think... i didnt know about dilators.. what are they ? pills ? please advise.. thanks
Katia
  #9  
Unread 04-06-2004, 01:20 PM
Dorrie

Dorrie
Thank you so much for your advice. estrogen is not an option but i am thinking of using vitamin E to help lubricate it... replense is so painfull for me that i cant use it unless i want to be in tears, it literlally bruns me so bad...thanks for taking the time to help... i really appreciate it.. i wish estrogen was an option but with my history i am really gun shy ...
thanks
Katia
  #10  
Unread 04-06-2004, 07:35 PM
Help !! Too young for this :(

Hi Katia...

Was just scrolling thru and noticed Linda (surferbabe)'s suggestion about checking out the No-hormone forum. Have you looked into that? The women there are all dealing with the decision to NOT use hormones--for various reasons, including cancer--and you may find some good info there, too.

You're being held in thought and prayer.

Blessings.
Marlene
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