Vaginal Mass - diagnosis

Hi Gillian50 

This is wonderful news-I really appreciate you coming back to the group with your update, and I’m certain it will be very helpful for others to read. It just shows us too that we can’t diagnose ourselves on dr Google!

I wish you all the best going forward and hope you can put all this stress behind you and get on with living a happy, healthy life!

Sara xx

Yes, google was the worst thing I could have done.  Thank you so much Sarah, I really mean that xx

As a precaution you should consider asking your oncologist to order a PET/MRI scan. All 12 of my biopsies showed inconclusive and non-invasive but that just didn’t correlate with the cancer cells present in my vaginal wall. After having the PET/MRI scan it showed I have a tumor on the first lymph node in my vagina so I now have stage 3 vaginal cancer. It is very rare so I’m not finding much community support on it. FYI, I do not have cervical cancer not do I have HPV. I am fit, eat healthy and a former smoker but never an extremely heavy smoker. Quit well before diagnosis. I say all of this just to urge that you do that test if possible. Possibly saved my life. I am not doing chemo and radiation for the cancer and no surgery. I wish you much health. 

Thank you. I was never in the care of oncology but I suppose I can ask my GP and potentially they could do bloods or refer me. I’ll definitely ask. Thank you so much and I really hope you are doing well x

Hi Gillian

I didn’t expect to see you posting again here-I hope you’re doing well! The gp will only do a referral to gynae if there is a reason to refer from symptoms you present, so are you having any symptoms again which are concerning you? 

With our gp surgery they cannot refer directly for any scans-only a consultant can do this after being seen from a referral-I’m not sure if the process is the same for you. As you had surgery where the result was benign and there was no malignancy there would not have been a reason to be under the care of oncology and there would not necessarily have been a reason to be referred for a pet or mri scan. 

Sarah xx

Hi GodsPlan and welcome to the group.

I haven’t seen you post before, but if you’d like to make a new post to introduce yourself it might be seen by more members and therefore you may get more support.

If you’d like to put some details in your profile it would let other members know what has led you to your diagnosis and that can be helpful in allowing others to reply to you. 

You have said you have not had surgery and are not doing chemo or radiotherapy, so would you like to share with us how your cancer is being treated?

Sarah xx

I actually said I have had two chemo treatments and 5 of 25 radiation treatments. Perhaps that post didn’t show? I don’t believe private information about where I am being treated should be shared on these sites (as in what facility) but I will say I am working with two oncologist and two radiologists in two separate cities to receive the specialized treatment I will need after my 25 radiation treatments. I have been fortunate to have all great doctors and look forward to hearing 1) I’m in remission and 2) eventually hearing I am cured. 

I have stage 3 vaginal cancer that is not in the cervix. I have a small tumor on my first lymph node in the vagina therefore I will not have surgery but will have 5 chemo treatments with cisplatin and 25 treatments of radiation followed by another MRI and then internal high radiation treatment performed as an inpatient in the hospital. 

I am happy to answer any questions about my diagnosis and treatment so far but I’m also looking for input about treatment side affects and long term results for others that have had vaginal cancer with the exclusion of cervical cancer. I understand vaginal cancer is rare with less than 5% of women having it so I’m just looking for someone else that has experienced it. 

Thank you for welcoming me. oh and as a post note: I mentioned to the other poster that she may want to consider having an mri pet scan because initially mine was determined to be non-invasive but I see I missed the important part that her mass was completely malignant and not pre-cancerous. I apologize for that over site. 

I meant to say I am NOW doing chemo and radiation. I did a typo of not! So sorry! 

Hi GodsPlan 

I see now that it was a typo in your original post, so that’s what led me to believe you were not having treatment. I wasn’t suggesting that you give details of where you are being treated, but was suggesting that if people were aware of the type of treatment they might be more able to provide support from their experiences. The original poster had a benign result and there was no malignancy identified, so my post to her was based on those findings. 

This is a quiet group on the community because this cancer is rare but certainly others have posted about their experiences of it. The treatment you are receiving is exactly the same protocol as for cervical cancer, which is one of the reasons I am a member of the group having been through it myself, as the side effects can be similar for these treatments.

Although my tumour was cervical cancer it was growing into the vaginal wall, and I ultimately had my vagina completely removed, so again I feel I can at times be able to support others who have been/are going through something similar.

However, as you’ve been specific about only wanting to hear from those who have vaginal cancer and not cervical, I will bow out now and hope you will receive replies from others who can comment specifically on vaginal cancer.

I hope your treatments are going well and that you’ll ultimately get the results you are hoping for.

Sarah xx

Sarah xx

Thank you for your kind reply. Of course if you had vaginal treatment as well I’m always open to hearing about your experience. I was just concerned I would get more replies about cervical cancer that would possibly confuse me about the vaginal long term treatments and results. I hope I didn’t offend you when I thought you were asking what hospital or cancer center I was being treated when you asked where I was being treated. I think you were referring to the area of my body? I tend to be a very open person but I’ve had so many strange texts about cancer treatment bills from facilities that I have never been to that turned out to be fraudulent that I’m wary about saying anything about location online. Now that we have that straightened out, I’ll most certainly message you here with questions or concerns and thank you so much! Xox and continued good health sent your way! Lisa