lindae's Cancer Blog
August 27, 2010
To my lady BFAC friends,
I went to my gynocologist today. The last time I saw her was 20plus years ago. I decided then since I was going to her yearly and my GP yearly for physicals I could drop the gyno and have the GP do the necessary PAP, etc. Besides the insurance company didn’t want to pay twice for alot of the same tests. I went to discuss the vaginal stenosis (sorry guys if you are reading this..but I am sure you have issues below the belt too)that resulted from the radiation. This is scar tissue in the vagina that basically shrinks the vagina. It will only get worse if you do not take action early on after treatment. My understanding after today’s discussion is that it will never go away. So to help keep things from getting smaller there are several things you can do. I will not discuss these in detail but let me just tell you a “sex” shop was mentioned. My sweet husband went with me to this visit. He waited in the doctor’s office during the actual exam (his chance to study the models of all the lady parts that she had in her office). When we were all together in her office she mentioned that maybe he could go to the “sex” store for a certain item. I wish I had a picture of the look on his face. It was priceless. I do not think I would let him go alone because there is no telling what he would come home with. But I think I would not be able to control my laughing if I were to go too. So I am going to try the online ordering route. I hope this does not start me getting spam from everywhere if you know what I mean. That would just add to the annoyance of all of this. This is just another phase of recovery that must be dealt with and we will. If anyone has any advice, tips, etc. on this subject please let me know.
I was very nervous about this appointment because I knew it would not be “comfortable”. It was not nearly as horrible as I imagined. That was one good thing.
One bad thing…upon breast examination I had a very tender area. She felt a cyst (1 cm) and feels pretty sure it is just a cyst. BUT to be sure I am having a breast ultrasound. I had a mammogram in June…it was fine. If you could squeeze me in your prayers I would appreciate it. Post-treatment I have been so blessed to have been told I have no evidence of disease. I pray this continues to be so.
Hugs,
Linda
Posted on August 25, 2010
One more doctor to see....one more side-effect to deal with, 
6 comments)
Hi Linda!
Would we ever, in our wildest dreams, imagine that we would have to deal with things like this? :( At least your gyno was upfront with you and told you that this is going to be a lifelong issue and gave you a good suggestion on how to improve things down there. Let me know how the online shopping goes!
I know you are anxious about the cyst, but I really believe that’s all it is. But it’s good to get it checked out and have peace of mind. I always have you in my prayers and am sure this is all going to be fine.
Love—
Martha
Posted on Linda,
Thank you for your bravery in this post. I, too, had radiation throughout the pelvic region, and have noticed issues due to the stenosis. I’ve been trying to “work things out” with my husband, but have had some discomfort and frustration. I am aware of my “shopping options”, but haven’t gotten up the courage to do the shopping, either in person or online, also for fear of spam- having two children, I don’t want to get X-rated stuff coming into our computer. It’s too bad they can’t have these things available in the doctor’s offices for review and purchase- I’d feel a little less shy about discussing this with them, rather than having to go to an adult store.
I will watch to see if you get any advice here from anyone- I fear that with the current chemo treatments, my “desire” to work things out with my husband is already waning due to my fatigue and other side effects.
Feeling your pain here- thanks again,
Kim
Posted on It seems to me these supplies might be something ACS could make available to people, so cancer patients don’t have yet another experience of self-consciousness. On the other hand, maybe these items could be a great fundraiser—along with BFAC T-shirts—vaginal dilators with the BFAC logo, in your choice of decorator colors :)
Andrea
Posted on I was given a vaginal dilator by my radiation oncologist after treatment. I was not very good at using it 3 times a week or every day as suggested. I hate it as a matter of fact. My medical and radiation oncologists both recommended I see a gynocologist to help me with the stenosis. My gyno recommended I start over with a smaller dilator and gradually use others sizes. I could buy from them for about $70-80.
She said she has had patients buy the dilators at “adult” shops for much less and that they are the same thing. $20 she thought. I think I am ordering from Vaginismus online a kit with several sizes for $44.95. The Premarin (estrogen cream) is supposed to help also. This RX I understand is quite expensive but coupons are available by going to the manufacturers website. I will try to report any progress after I get all my “supplies” together. I just don’t know that I can do this everyday (for 10 minutes). Seriously, what a hassle.
Linda
Posted on Hi Linda – plenty of space for you in my thoughts and prayers. Good thing to get the cyst checked out for your peace of mind. Hope the appointment goes smoothly.
Re the special purchase – made me smile . . . I recently did some online ordering too (was inspired by discussion here to take this “use it or lose it” situation seriously). It took quite some time browsing before I made my selection (I sat with a tape measure to get the size of things). Lucky for me that the store where I order cat and dog food, laundry and household supplies also have an “erotic shop”. Made me chuckle when the order arrived – a black plastic coated package in with the cat litter!
Thank you for raising this topic again – I am being slack keeping up with my homework. Having been under the weather I do find it hard to get motivated but I would hate for the day to come when I find myself saying “if only” . . .
love to you – and onwards and upwards (as it were). My tip – go for one with the rubbery latex coating – and a motor to make it a bit more like fun : ) janet
Posted on August 6, 2010
It is hard to believe that 7 months ago I faced the worst day of my life when I was told “you have cancer”. What a blurr December, January and February were. Did I really go through 2 weeks of chemotherapy? Did I really go through 6 weeks of the most brutal radiation treatments? Did I really have 2 very, very uncomfortable biopsies? Did I really have a titanium port sewn into my chest under my skin? Did I really have a colonoscopy the same week I started chemo and radiation? Did I really beat this horrible disease? HELL YES I DID! I am so grateful for all the wonderful information I have received from this site and all the love and encouragement along my road to being cured and recovery. We have a strange bond that will be everlasting.
To date all check-ups, blood tests, scans, pokes and prods have all resulted in “no evidence of disease”. I pray that that will always be the case. There are still a few side effects that I am dealing with. My hair is very thin. I did not lose all my hair and I think recently I may have stopped shedding now. This honestly was the least of my worries but I am so grateful that my hair loss wasn’t worse. I have vaginal stenosis which I am hoping will get better over time and with the help of my gynocologist. Sadly, I think there is no complete cure for this side effect from radiation as the problem is scar tissue. I still have soreness in my outer thighs (right around the little tattoo dots I got for lining up the radiation treatments). I had it in my head that the radiation treatments zapped the life out of my bones in that area. The results of a bone density scan indicates all is well with my bones. I am still working on building up my endurance to a level where I can start playing tennis again.
I thank God for giving me the courage, comfort and strength to survive.
Love to you all,
Linda
Hi Linda!
It’s so good to see your post! Yes, it’s hard to believe that it’s been 7 months since we first said hello to each other and you began your journey. I will always regret that we had to meet under such unfortunate circumstances, but I thank God every day that I have you as my friend! I’m so glad you are doing well and all follow-up tests and scans have given you good news. I hope that continues forever for you!
I know the lingering side effects can be frustrating, but please don’t get discouraged! I hope your gyno can help you with the stenosis. The hair will grow back and if you stay active and keep moving, your bones will remain strong. I think you’ll be on the tennis courts again real soon!
I admire you so much, my dear friend. You traveled this road with so much strength, courage and grace and you have every reason to celebrate—NED! Yay! I hope we can meet again someday for another long lunch and good chat. That was a very special time for me. Please keep in touch and if you ever need anything, you know where to find me!
Love—
Martha
Hi Linda,
What a wonderful update! I hope you find your strength soon for that tennis game. And I’m really glad to hear your bone scan was normal. That is just wonderful news. I’ve worried about the same thing myself. May your health continue to improve daily! Keeping you in my prayers!
Ruth
Posted on I’ve just joined, and I’m only at the “treatment completed” stage, realizing that there is much more uncertainty to come. Congratulations on making it to the end! Keep posting about the next stage of your life…
Posted on I’m glad to know that there are others out there who have experience this same cancer type. I am just a few weeks into the recovery stage after Chemo and radiation. It sure is taking it’s toll. Would love to know what’s worked and what hasn’t and that there is going to be a time when I feel “recovered”. I’ve been very optimistic throughout, but the reality of the side effects are beginning to take there toll. Any Advice?
Linda – Wonderful news. It is amazing to look back and wonder how we made it through those days. I am glad that you are feeling well and enjoying life! Cherie
Posted on To my lady BFAC friends,
I went to my gynocologist today. The last time I saw her was 20plus years ago. I decided then since I was going to her yearly and my GP yearly for physicals I could drop the gyno and have the GP do the necessary PAP, etc. Besides the insurance company didn’t want to pay twice for alot of the same tests. I went to discuss the vaginal stenosis (sorry guys if you are reading this..but I am sure you have issues below the belt too)that resulted from the radiation. This is scar tissue in the vagina that basically shrinks the vagina. It will only get worse if you do not take action early on after treatment. My understanding after today’s discussion is that it will never go away. So to help keep things from getting smaller there are several things you can do. I will not discuss these in detail but let me just tell you a “sex” shop was mentioned. My sweet husband went with me to this visit. He waited in the doctor’s office during the actual exam (his chance to study the models of all the lady parts that she had in her office). When we were all together in her office she mentioned that maybe he could go to the “sex” store for a certain item. I wish I had a picture of the look on his face. It was priceless. I do not think I would let him go alone because there is no telling what he would come home with. But I think I would not be able to control my laughing if I were to go too. So I am going to try the online ordering route. I hope this does not start me getting spam from everywhere if you know what I mean. That would just add to the annoyance of all of this. This is just another phase of recovery that must be dealt with and we will. If anyone has any advice, tips, etc. on this subject please let me know.
I was very nervous about this appointment because I knew it would not be “comfortable”. It was not nearly as horrible as I imagined. That was one good thing.
One bad thing…upon breast examination I had a very tender area. She felt a cyst (1 cm) and feels pretty sure it is just a cyst. BUT to be sure I am having a breast ultrasound. I had a mammogram in June…it was fine. If you could squeeze me in your prayers I would appreciate it. Post-treatment I have been so blessed to have been told I have no evidence of disease. I pray this continues to be so.
Hugs,
Linda
Thanks for your support - 
