Dilators after radiation

heyall_1983
heyall_1983 Member Posts: 1
in Gynecological Cancers (other than ovarian and uterine) #1

I was wondering if anyone has gone without using the dilators for some time then able to start again? 

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,505 Member
    edited October 2017 #2
    heyall - I guess there are

    heyall - I guess there are some questions back.  How long is "some time"?  How long has it been since radiation? 

    Stenosis is real and vagina's will close up and future pelvic exams can be very painful.  I think most of us (I am a visitor from the Uterine board) have been told by doctors 3 times a week.  One woman who I miss terribly had said every day.  I know after almost 5 years I can skip days and go back to it with no problem. Early on after radiation I really couldn't have done that.  

    Just my two cents.  

  • Barlee
    Barlee Member Posts: 2
    #3
    Dilator after radiation

    Hi,

    I have finished chem - internal and external radiation one year ago for Vaginal Cancer (Stage 1).  I use a dilator (small) I cannot use a large one at all and every time I use it I bleed, is this normal.  I go for my three month check ups and I of course, bleed when that is being done.  All tests have come back negative (thank heavens) but is it normal to bleed everytime.  Also, my husband is of course fustrated do to the fact that I cannot have intercourse (will that ever change).  Thanks

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,505 Member
    #4
    Barlee, I am 5 years out from

    Barlee, I am 5 years out from uterine cancer having had chemo, external, and internal (brachy) radiation and still have 'pink' on my dialator.  I also was worried and had it checked - I was told it was radiation burns.  I understand the worry about the bleeding - the pink still bothers me. 

    The brachy therapy given to cervical cancer patients I think is different than uterine.  Ours is just like a wand/tampon - isn't the cervical brachy more of like a 3-pronged device?  My radiologist had showed it to me and my heart cried for you ladies.

    I know it is hard - I really struggled when I started using a medium dialator but kept workiing it - every day.  Work that small - use lube - and I hope you can work up to a medium.  Hugs dear one!

  • Barlee
    Barlee Member Posts: 2
    #5
    NoTimeForCancer said:

    Barlee, I am 5 years out from

    Barlee, I am 5 years out from uterine cancer having had chemo, external, and internal (brachy) radiation and still have 'pink' on my dialator.  I also was worried and had it checked - I was told it was radiation burns.  I understand the worry about the bleeding - the pink still bothers me. 

    The brachy therapy given to cervical cancer patients I think is different than uterine.  Ours is just like a wand/tampon - isn't the cervical brachy more of like a 3-pronged device?  My radiologist had showed it to me and my heart cried for you ladies.

    I know it is hard - I really struggled when I started using a medium dialator but kept workiing it - every day.  Work that small - use lube - and I hope you can work up to a medium.  Hugs dear one!

    Thank you

    Thank you for getting back to me - and a hug right back at you.

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,505 Member
    edited February 2018 #6
    Barlee, I saw one of the

    Barlee, I saw one of the women on the Uterine board mention they use lidocaine with their dialator as well.  You might want to ask about that. 

  • Theskinnyscot
    Theskinnyscot Member Posts: 36 Member
    #7
    Vaginal stenosis

    hi fellow cancer survivors, I am relatively new at this. I was diagnosed early September with a grade 3 endometrial cancer. I have since had a complete hysterectomy and just started external beam radiation today. I asked the nurse today about a dilator and she said to wait until after treatment. I am a little worried about that as I already have vaginal stenosis and at my last Pap test they had to use a pediatric speculum and I am afraid that after the radiation the whole thing will be totally closed!

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,505 Member
    #8
    dearest skinny, I think any

    dearest skinny, I think any of us who have been there completely understand your fear.  I did not get my dialators until after I completed my internal radiation which was AFTER my external. They have different sizes of dialators, and while I started with a medium they do have a large - both which were very difficult to use at first - I'm not going to lie to you.

    Are you having internal, brachy, radiation?  I would invite you to post over on the Uterine board so the other ladies can chime in with their experiences.  It is a little quiet right now, so feel free to PM me if you would like, but you will find the ladies there willing to listen and make suggestions.  

  • Theskinnyscot
    Theskinnyscot Member Posts: 36 Member
    edited December 2019 #9
    NoTimeForCancer said:

    dearest skinny, I think any

    dearest skinny, I think any of us who have been there completely understand your fear.  I did not get my dialators until after I completed my internal radiation which was AFTER my external. They have different sizes of dialators, and while I started with a medium they do have a large - both which were very difficult to use at first - I'm not going to lie to you.

    Are you having internal, brachy, radiation?  I would invite you to post over on the Uterine board so the other ladies can chime in with their experiences.  It is a little quiet right now, so feel free to PM me if you would like, but you will find the ladies there willing to listen and make suggestions.  

    Vaginal stenosis

    notimeforcancer, thank you for your quick response. I think I am probably. Going to opt for the smallest one they have, can you say "chicken". I am not having Bracry just 25 ebrts which I am nervous about as I have a lot of scarring on my abdomen and pelvis folds from skin grafts as a child and osteoporosis and hemochromatosis, all of which are not going to be happy with all that radiation. Sorry, off on a rant but again thankyou and I hope you and everyone on here has a lovely Christmas.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,505 Member
    #10
    skinny, 'rants' are ok.  You

    skinny, 'rants' are ok.  You are at a place where you find an open ear and we understand the 'fear'.  I had both external and brachy radiation therapy and never wrapped my mind around that treatment.  

  • Nan cee
    Nan cee Member Posts: 1
    #11

    I was treated in April 2015 for Papillary Serous Endometrial Carcinoma IIIc. After complete hysterectomy, debunking, washing, and 28 modes removed, 8 affected, I had 6 rounds of chemo and 25 courses of radiation. I've survived nearly 5 years with this rare form of cancer. My gynecological oncology surgeon as well as my oncologist said they will release me at the 5 yr mark in April 2020. I think this is not good for me. Yes, I've survived for 5 years but the chances of this high grade cancer spreading is very high. I think I should continue dealing with doctors who know what to look for at this point. Does anyone have experience with this situation? Would another hospital take me on with NED? If you have feedback I would appreciate it. I'm 67 years old.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,505 Member
    #12
    Nan cee, I am 7 years out and

    Nan cee, I am 7 years out and see the gyn onc annually and still see my gyn because she is awesome.  My gyn still does a pap - I said I am fine with that since I have good insurance.  

    Consider telling them you would like to continue seeing them annually due to the agressive type and staging of the cancer.  

    I would also suggest posting over on the Uterine board, just scroll down further in the list of Cancer Specific list. 

    I want to close with CONGRATS!!! 5 YEARS IS AWESOME!! Believe me,  the wonderfully, supportive women there will be glad to hear your good news as well. 

     

  • annie4145
    annie4145 Member Posts: 218 Member
    #13
    Theskinnyscot said:

    Vaginal stenosis

    notimeforcancer, thank you for your quick response. I think I am probably. Going to opt for the smallest one they have, can you say "chicken". I am not having Bracry just 25 ebrts which I am nervous about as I have a lot of scarring on my abdomen and pelvis folds from skin grafts as a child and osteoporosis and hemochromatosis, all of which are not going to be happy with all that radiation. Sorry, off on a rant but again thankyou and I hope you and everyone on here has a lovely Christmas.

    This is the one that my

    This is the one that my doctor gave me for free. (I know that it is very expensive, but I do recommend it for others.)  It easier to insert and then expand, then insert a larger size. https://www.millimedical.com/purchase/

     

    I also used soul source for a dialator set.  I know that you are worried, but I would probably wait until after treatment. I am sure that it will be very sore during treatment.

  • Jennifer4572
    Jennifer4572 Member Posts: 2 Member
    edited September 2021 #14
    Vaginal stenosis

    Hi ladies,

    I'm brand new to the CSN message boards, and it's the first time I'm hearing from others who've been through the same treatment as me. I was diagnosed in June 2020 - at age 48 - with an adenocarcinoma tumor (Stage II A) at the top of my vagina, near my ureter. Surgery wasn't really an option. My GYN/ONC said more than likely, that would've left me with a permanent urostomy/colostomy (both)!!! I couldn't believe it. I went through five weeks of external beam radiation with Cisplatin chemo (six rounds). After that, I was hospitalized for three days for bracytherapy (internal radiation). They had 20 rods and needles targeting my tumor - my radiation oncologist said it was the most she'd ever put in. I finished treatment right around this time last year, and after my PET scan on December 8, I was declared NED (no evidence of disease). That said, I'm still worried that it'll re-rear its ugly head. My  check-ups cannot get here soon enough. It seems like a lot of vaginal cancers (at least on this board) are recurring? My GYN/ONC said that I have an 80% chance of staying NED. I hope that's the case, but I don't think I'll feel confident until I hit that 5 year mark. 4 years and 3 months to go.

    Regarding vaginal stenosis, I don't use my dilator often (because I just HATE it, and it's a grim reminder of all I've been through). I know realize I need to do it. I'm married 21 years, so I do put myself through intercourse on occasion, and it's pretty excruciating. I always make light of it and call it a "crime scene" afterward. (Sometimes humor helps.) My exams are always bloody too. (I have my next follow up in two weeks.) It would be interesting to hear from a few others who are going through this to better understand how long it takes before you're officially free of stenosis? I would think after a few months of routine use, the scar tissue would heal/respond?

    Also (NoTimeForCancer) - thank you for all the sharing and commenting you do for all us ladies out here. It's nice to see someone 7 years out inspiring others going through it  - Congrats to you!   

  • cmb
    cmb Member Posts: 1,001 Member
    #15
    Dilators after radiation

    Jennifer,

    This board can be quiet at times, so I suggest that you visit the Uterine Board (where I normally post) at https://csn.cancer.org/forum/189

    There are a lot of posts there about internal radiation and and some include comments about dilator use. You can use the search function on the main page of that board to look for related posts.

    This is a link to an older thread that was reactivated by some recent comments: https://csn.cancer.org/node/301891

    Feel free to copy your message over to the Uterine Board's site to get more responses. While your cancer started in the vaginal area, we welcome any women who are dealing with the "below the belt" cancers. Treatments and side effects are often similar across all these cancers.

     

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