Newly diagnosed.... scare and confused

Hello, thank you for allowing me to join.  Have never used or joined a form so all new for me... apologies  if I get things wrong!

have just been diagnosed with vaginal  cancer.. squamous cell carcinoma after biopsy’s and lots of CT scans and MRI scans... am seeing the oncologist on Tuesday but have had phone calls from hospital re urgent scans, was given diagnosis over the phone (at my request as I asked) but am very worried and anxious. Apparently a scan has shown a legion on my liver.... has the cancer spread? Don’t know what to expect and am very scared I am 53. Thank you for reading this x

  • Hi and welcome! I too am 53 and very recently diagnosed. It seems very overwhelming at first but take each day as it comes and don’t try to do too much. Don’t be afraid to ask questions. What treatment have they recommended? I’m due to have a radiotherapy CT scan on the 10th and from there chemoradiotherapy to follow. I would start by making a list of questions and then either telephone your oncology nurse or oncologist’s secretary and ask your questions. If you have an appointment soon, then ask your questions then. My team are extremely helpful and take the time to answer all my questions and believe me there are many. Take care xxx

  • Hi I was diagnosed with VC ended July 2020 I had chemoradiotherapy and brachytherapy, I was given the news that there was no active cancer in March 2021, I still suffer side effects and pain in my hip, it was thought that it was spreading to my pelvis but I believe it’s not active. It’s taken 6 months and a lot of painkillers hopefully the positive status will continue. Look after yourselves x

  • Gez28, I also am 53, had the brachytherapy, chemo + radiation. Things seem to be all clear. My question has to do with sex after all this nonsense. Are you using dilators? Do they help? Another kind person on here told me to try lidocaine, which definitely helps, but still extremely painful + I feel so bad for my husband. Trust me, he is extremely patient, BUT... I really don't even care about sex now, would much rather just forget about intercourse, but just wondering if there is hope out there. I know there is scar tissue in front of my cervix, so my husband can barely even fit in. 

    As for treatment + outcome, that was all super positive. Happy to help anyone with questions about that.

    Thank you! Wishing everyone here good healing + better health

  • Hi I know it might seem important but I was told by the consultant that it was so important to persist with the dilators as you will need to be examined internally to check for recurrence of the disease, as I can tell you it can close.  It does get easier it has been over 12 months since my treatment finished I always had a bath before attempting to use the dilators, once I felt more confident I did have sex with my husband it took time but  is much more comfortable, it does change your attitude, we also had to change positions, it took patience and understanding on both parts. Just let me know whether you want to discuss it further. Take care G

  • Hi...invest in Yes OB, you can get it on Amazon...and the Hope & Her dilators, Im waiting for mine to arrive, they're not rounded like the NHS ones...they've been recommended by my sexual health nurse (who even knew that was a thing?)

    You can get instilagel which helps, i used to go in with the instilagel on the smallest dilator (give it 5 mins to numb)  then go in with the Yes OB on a dilator, yes it was a faf, but it really did help when we had sex..

    Id also really advise you use Zeroreen to wash with, I had late onset side affects, basically my labia and vagina ulcerated, this was 12 months on from my took 8 months and steroid creams for it sort itself out...I've only just now been able to start with the smallest dilator again because of how fragile the skin had become...the entranced is incredibly tight, but at 52 I'm not ready to throw the towel in just yet, plus I became single 5 months after my treatment it would be nice in time to meet someone..

    On an very positive note..I am now officially 3 years without cancer, I had a clear MRI 3 weeks ago..

  • Shelley2012 ~ thank you so much for your info! Congratulations on your 3yr mark, that's awesome. Sorry it's taken me so long to reply. Your dilator, etc info will be of great help! I'm going to look all that stuff up now + purchase. Luckily my partner is very patient + I'm not really ready to throw in the towel. The Dr's really should provide more info, better products + more help with this stuff, so easy to get discouraged! Sounds like you had a really rough go, so sorry about that. Keep the positive attitude + I'll give an update on my progress. I do need to do baths, I just get lazy + don't like baths. 

    Thank you!!!

  • Funkypaige,  Are you in the UK?  If so, we can get Zeroreen on prescription, ask them for YES VM too, they come in 5ml (they're great) and they do a large tube, as for both, the dialators I got because my specialist nurse sent a note to my GP, they're called "Amielle Care Vaginal Dilators" ...Honstly, save as much money as you can, I spent a small fortune in the beginning, only to find a nurse that actually advocated for me...

    x Shell