Good afternoon ladies. I haven't been on here in a while. So I was diagnosed with vaginal cancer in April. It was stage 3. It was on cervix, vaginal wall, and 3 lymph nodes. It did not go outside of pelvic wall. I had radiation and chemo. I had brachytherapy in July. I went back to work on August 1st. The radiation was the most difficult part to me. The skin irritations and I had severe abdominal pain off and on. God brought me through it though! The doctor said I responded very well to treatment and the scan in July did not show tumor anymore. I go back on October 2nd for new PET scan. Doctor said this will determine if additional chemo will be needed. I believe I'm all clear. I asked about immunotherapy. She said she didn't think I needed it now.
So as far as sex. LAWD it was painful. They recommended 3 days a week or use the dialator. It is getting better now. It takes a while just in case someone reading this is dealing with that too. Anyway, I welcome some feed back.
Definitely ask questions-you could ask about the risk of recurrence with or without radiotherapy/brachytherapy, what is your risk of long term side effects from either treatment, and what are the consequences of having no treatment. Also what would be your next option if VAIN becomes invasive cancer, or your vaginal cancer recurs.
Typically, treatment is offered to reduce the risk of recurrence which is why it is being suggested for you but risk of recurrence can never be totally eliminated for anyone, regardless of treatment.
Sarah xx
Hi Debs
I’m sorry it wasn’t better news for you, especially as you’d made the decision to go ahead with the treatment.
Yes, I did have my vagina completely removed as part of my larger total pelvic exenteration surgery. My surgery was done as open abdominal, so my only wound was from my belly button to my pubic bone. Obviously I have my 2 stomas, one on either side of my belly button, but nothing else to be seen externally.
I am left with a vaginal “stump” inside, same as my rectal “stump” having had my rectum removed, but everything is sewn up internally, so I had no external stitches anywhere, other than round my stomas.
I found it very uncomfortable to sit down after surgery, even in my hospital chair-it was easier for me to be lying down in bed, or even sitting in bed because of the way you can move and position the hospital bed. It took several weeks for my internal stitches to heal to be able to sit comfortably. I chose not to have any vaginal reconstruction done as it would have increased the length of my surgery and required a plastic surgeon.
I found there was no help psychologically offered or given but it’s a big deal to lose your vagina and know you will never be able to have sex again! Doctors want to sort out the physical issue, but I haven’t found any of my surgeons or doctors thinking about the emotional and mental aspect.
I don’t have experience of second opinions, as I went with the recommendation of my gynae surgeon, and I also didn’t really have the time to start the process as my cancer was growing aggressively.
If the MDT from the Marsden comes back with a different opinion to your doctor, how would you feel about that? I’m not surprised you’ll be feeling in a spin right now with this potential change to your circumstances. I don’t regret my surgery at all, because as I’ve said before, my priority was getting rid of the cancer, but I appreciate we are all different and may hold different views.
Sarah xx
Hi Blackswan and thank you for joining the chat here.
You are lucky to get specialist counselling-I have had counselling in the past, and am currently receiving weekly counselling under the nhs but this is not from a specialist or psycho sexual counsellor. However, I am finding it helpful in general since I suffer from anxiety and ptsd.
It was only after my surgery that I really thought about what I had been through and it took me a long time to reach out for help-almost a year. I was very disappointed by the reaction of my lead surgeon-she seemed astonished that my mental health was affected by my surgery and wasn’t very receptive to my need for some help, so she pushed this onto my CNS who got me a referral. It took a lot for me to ask for help, and to be given the impression I didn’t need it was quite soul destroying.
There needs to be more talking, and definitely follow up after surgery. I’m sad I didn’t get any of this at the time. You’ve been very honest sharing here, so thank you for that. I’ll never know how I might have felt if I’d attempted reconstruction but I’m not sorry I didn’t do it. I have a number of friends in a support group who have had this done and have similar feelings to you. Some have also had significant physical issues, so I’m glad in a way I saved myself that kind of pressure. That door is forever shut now so to speak! But other than in a safe place like here in the community or in my online support group I would never discuss this with anyone except my partner, so it can be quite isolating.
Sarah xx
