Just jumped on here for a bit of support really as hard to find forums for my particular diagnosis.
My troubles stared in Nov 2014 when I was 47. I had cin3 following an abnormal smear test and had letz loop done twice as did not clear all cells. In Oct 2015 had another smear which showed cin3 again. Decided on hysterectomy which was carried out in June 2016. Following my hysterectomy experienced some bleeding after sex but doctors put this down to surgery.
Finally in Early Dec 2016 diagnosed with squamous cell carcinoma of the vaginal vault with a growth. Had MRI scan and PET scan done which I have been verbally told doesn’t show signs of spreading. Appointment on 12 Jan to discuss treatment which is to be Chemoradiation.
I have been told this is unusual so there’s not much out there about this but reading the posts on here, the treatment seems similar.
Welcome to the forum! You are correct, this is much more rare than cervical cancer but we are all very friendly and supportive and will do whatever we can to help. Loads of us here have had chemo-radiation so if you have any questions about it, do please ask. Assuming that the chemo side will be Cisplatin you will find this is a much easier treatment to cope with than you might imagine and there is no hair-loss :-)
Thanks for your rely. Yes I will having cisplatin. just feeling really scared at the moment and just want to get on with the treatment. Everything just seems to be taking ages and this adds to the way I feel. I am stage 2 grade 2 which scares me even more.
I have been reading the posts on here about the treatment and am just hoping this works.
Certainly this cocktail works incredibly well for cervical cancer, there are women here who have been cured from stage 4 which would have been thought miraculous a few years ago. I'm sorry but I don't know much about staging of vaginal cancer but I hope this works just as well for you as it has for very many of us.
im sorry you are going through this. Im happy you decided to post. Welcome to our club.
It sounds like some rogue cells were left after your hysterectomy. Rest assured the chemorad is defiantly an effective treatment. It's not as bad as you think. The rad will cover the whole pelvic area. Regardless of where the cancer is exactly the field range is the same for cervical or vaginal.
Im certain it will not be as hard physically as the hysterectomy was. Please stick around and let us know how you are getting on. We are here for you and you don't have to go at this alone!!!
My story sounds similar. I have persistent HPV and had hysterectomy for 1a1 cervical cancer last July. My 6 month follow up all looked fine but the vault smear showed VAIN 3 and then biopsies under general anaesthetic showed invasive cancer I am waiting for repeat MRI and PET CT scan and then have been told I will likely be offered radiotherapy over 5 weeks. I have so math questions at the moment. I don’t know why radiotherapy and not surgery if early but think it may be because although only one focus of cancer there is multiple areas of VAIN3?
I would love to hear about experience of radiotherapy as I am really worried about it
Thanks in advance
So sorry to hear what you are going through and yes your story sounds similar to mine. Please take comfort in the fact that I’m still here and cancer free.
I don’t normally visit the site anymore but wanted to reach out to you. I had my treatment over 5/6 weeks. Radiotherapy every day. It was quite painless although you do have to drink lots of water to keep your bladder full. I also had 3 lots of chemo but it was the mild sort so no hair loss. I also had the Pet scan before my treatment started to determine spreading.
You will have your up and down days, we all did, even now but there’s so much information and wonderful ladies on here. I found it so supportive.
I still have check ups with my oncologist and I’ve had a couple of bleeds which have turned out to be nothing - fragile vaginal wall due to radiotherapy.
Just keep going, try to stay positive, pop on the forum when you need to and I wish you all the best.
I was just confirmed with Vaginal Cancer this week. I have a similar story to you although I missed out the cervical cancer bit and had my cervix removed when I had my hysterectomy.
Yesterday I was told it stage 3-4A as the tumor is beyond my vagina and is around 5cm. So that was a bit of a shock!
The only good news is that he hasn’t spread further but they are worried it’s a bit close to other organs.
I’m also waiting for my call from the cancer care team to see what my plan is. Just hoping it starts soon. This forum has been so helpful in terms of information and support.
Really sorry to hear of your diagnosis of vaginal cancer too. I started treatment on Monday with five weeks of daily radiotherapy and weekly chemotherapy with a drug called Cisplatin. I have been offered brachytherapy three sessions at the end. The team looking after me have been amazing but I have struggled with decision making as they tell me my case is unusual as it was by chance that a random biopsy in an area of VAIN 3 showed a focus of cancer, there is nothing to see with the eye or on scans which is obviously good news but makes decisions more difficult as there is a worry they might be over treating me but at the same time worry of under treating. My first chemo was fine I have only felt a bit tired (it suddenly hits you and a 30 minute nap sorts you out!). Hope your treatment starts soon x my only concern is the side effects of which no one seems to be able to give a true indication of what they will be like I find some professionals quite negative about stenosis and some more positive. So I have decided to not think about it until it happens and focus on getting on with the treatment. Please feel free to contact me for support xx
Kontikitoo I am so sorry for your diagnosis, I really hope you can start treatment soon, and get rid of this cancer so you can finally put this all behind you as I know you been dealing with this for many years now. Sending you lots of strength
Thank you and I hope it continues to go well for you. The lack of information some times can be disheartening. It’s my main reason for posting on the forum, so hopefully my experience helps someone else. Likewise happy to be in contact toox
Sorry to hear this kontikitoo. Let us know how your treatment goes. I’ll be thinking of you and looking forward to the good news when you can report the cancer has gone! Lots of love, xx
Still early days but very grateful for the support.
In the tail of the whirlwind of the last few weeks, today’s update is an overnight stay or two next week to have an x-ray and stent fitted as the tumor is close to my kidney. On the same day I also get my treatment plan!
At least it doesn’t give to too much time to think!
In rebellion though a glass of wine on a school night with a good friend has been massively helpful.
If this has taught me anything so far, it is how many good people are out there willing to help!
Thank you for thinking of me. I’ve been a bit hesitant to post on her recently as I guess I’ve just been trying to process everything going on.
The stent was fitted ok but it was more painful than was suggested and I ended up crying on the table, just because everything was racing through my mind. I ended up in hospital for 3 nights as my blood pressure remained high but they let me out on the Thursday for my first appointment at the cancer centre.
That was quite an emotional experience walking through the door for the first time! But it was all ok.
I’ve since received my treatment plan this week after more scans, bloods and the famous tattoos.
So it’s all systems go on Monday!!!
So, I’ve got a 5cm tumour, a bit too close to my kidney - hence the stent. So they are going in with 35 weeks of rads and 5 weeks of chemo.
How it got so big, despite me having 6 monthly check ups is a bit of a concern. I wish I’d been offered a scan sooner. But that’s where we are now.
Lots of friends and family have been to see me this last week, but the funniest expression of love was from my mum, as she bought me two bumper packs of toilet roll as I had mentioned a likely side affect was diarrhea
Really hoping treatment is and absolute success and you can put al this behind as soon as possible, yes is a bit concerning that after all the checks you had nothing was picked up earlier, probably a scan for everyone going through Lletz treatment or similar treatment should be a must, is not the first time I read stories of ladies in this forum that after going to all appointments something was missed.
Sending you strength ,and let us know how you are getting on
I am waiting for repeat MRI and PET CT scan and then have been told I will likely be offered radiotherapy over 5 weeks. I have so math questions at the moment. I don’t know why radiotherapy and not surgery if early but think it may be because although only one focus of cancer there is multiple areas of VAIN3?
,and let us know how you are getting on 
