Hi everyone. I'm new here. Please see my story on my profile. I was diagnosed with endometrial cancer which has spread to aortic lymph nodes and new tumours in vagina.
Hopefully I'll be able to have a vaginectomy then radio and chemo. Strange, the things you wish for
Hi Sistermoon and welcome to the community
Gosh, I’m sorry to hear what you’ve had to deal with so far, with more to come. I don’t have vaginal cancer myself, mine was cervical, but I know this group can tend to be quiet so I pop in to check fairly regularly, as I have had my vagina removed as part of a bigger surgery for my cancer. I’ve also had chemo and radio for first line treatment so have a bit of experience!
I completely understand when you say it’s strange what you wish for. I was desperate to be able to have my surgery to give me a chance and feel so lucky to have been able to have it. Even though our situations are not the same, if I can help with anything please let me know.
Hi Sarah, many thanks for your reply. I have read your profile and you've had a lot to cope with. I hope you are still doing well. I myself put my head in the sand at first due to work pressures (ridiculous or what). I think, looking back there were signs a long time before.
I hope I get better news after these scans instead of the usual bombshells, it's been bad news at every stage. I'll let you know how I get on and what the plan is. Thanks again for your reply, I suppose it's quiet on here as it's not a common cancer. Even though mine is secondary to the original I feel that this is the more apt group and surgical situation I'm facing now....perhaps, I hope.
Thanks again and best regards
Thank you-yes, I’m doing well more than 2 years from surgery thankfully. I had been experiencing symptoms for probably close on a year before I went to the doctor-hard to believe now that I was so stupid, but I try not to look backwards. Even when I had a good result from my chemo and radio I had a niggling thought that it wasn’t over for me, and I never fully believed I would be fine. But that’s all water under the bridge now, and we are where we are.
I really hope the scans are as good as they can be and that you can move forward with surgery. It sounds horrific-so I don’t exactly go round telling people!- but the reality is not so bad when it means getting rid of the cancer. I think because everything I had done was internal (except having stomas) I didn’t feel the loss of my vagina as a huge thing, because it wasn’t something I had to look at, as it would be for a mastectomy for example. Maybe made it easier to cope.
Hope we can keep in touch, and I wish you all the best from your pet and mri.
Yes, I know what you mean about telling people. I update my boss at work as I am off sick but held back from saying the word vaginectomy. I haven't got my head around it yet so that bit may not be up for discussion. I've been quite open about it all till now as I think if I state facts it stops gossip but some things may remain private.
I'll definitely keep in touch and will let you know the plan. Thanks again Sarah.
I wasn’t the type to share, so very few people know what cancer I had, never mind the surgery. Even my in laws have no idea that I have 2 stomas. They didn’t ask what surgery I was having, so I didn’t tell them!
I think it’s a very personal choice-what to say and who to tell. I felt that was one of the few things I had any control over, when everything else was out of my control. you just do what you feel is comfortable for you personally, I think.
Sorry for late reply, had trouble re notifications. Please click on my name for full story. I'm currently having palliative chemo, had 2nd cycle a week ago. Had a horrendous week after it, all kinds of symptoms. I had a course of 5 radio sessions at the beginning of June for symptom control.
I was starting to get signs from my body that it was working but I'm not so sure now. I will be having a CT after 3rd cycle and then a review with medical oncology. So not long to wait for concrete information.
Are you fully recovered now? Hope you are well.
Thanks for your reply,
It's not showing your profile when I click on it..
I've been NED for just over 3 years...a few nasty late on side effects from treatment..my vulva and vagina ulcerated about 10 months after my treatment ended and I (God I hate the word) secrete a lot of vaginal fluid because of how bad the vaginal stenosis is..I also developed Pudendal Neuralgia..I had nerve blocks for that .but I've not had one since February and I'm doing OK...I also have shocking pain in hips..possibly down to the 25 rounds of RT I had...but..I'm back at the gym and I started taking Turmeric back pepper and ginger capsules and they've made a significant difference to the pain...
The above complaints aside..im happy and getting on with my life..with my defunct vagina lol...x
Sounds like you've had a hard time and then some. I know how you feel re the vaginal fluid, this tumour was discharging a lot of fluid but this has eased now since the radio/chemo.
That's good that you're building strength at the gym and the capsules sound interesting.
I'm sorry, I'm not sure why you can't see my profile, I've had a look and it's still there. I was diagnosed as endometrial cancer, have had 2 separate surgeries and have vaginal tumours that grew in weeks and spread through muscle and bone. The surgical team were shocked by how aggressive it is. I was diagnosed with cancer in January this year, was told it was a simple form and likely to be contained to the womb, by April it was aggressive and I was stage 4. It's hard to deal with some days.
We'll have to form the defunct vagina club, haha, don't know if there will be many members though as it's fairly quiet on here. Good talking to you Shelley, take care,
Oh sweetie - that's shocking, here if you need to chat...I know how lonely it can feel on this journey, I just didn't want to talk to friends or family about it..I suppose I wanted some normality ..I didn't find support groups until after my treatment had concluded.. there's also a site on FB called Cancer Supporters and Survivors, its a nice group x