Vaginal cancer diagnosis

@leahchawkins It's so frustrating that your local gynecologist did not investigate thoroughly when you first came in with the slight bleeding/light pink discharge. Will you be getting the PET/MRI at Mayo Clinic? If yes, then in my experience when I had that scan a few years ago I received my results very quickly. The results were posted on my Mayo Clinic patient portal and my nurse practitioner who ordered the PT/MR (she consulted with the gyn-oncologists in the department about which scan to order for me) called me and we talked about the results. My impression is that the reason for the PET/MR is to see if there is cancer in other places in your body. I hope that isn't the case for you and that the cancer that was diagnosed is local to the vagina.

I was diagnosed with endometrial cancer (endometroid adenocarcinoma) and did not have vaginal cancer.
I am tagging @rainyp @savypaige25 @jabrown0407 @jeanadair123 @joni66 who reported here on Mayo Clinic about their experiences. I hope that they will respond here and offer their experiences and provide you with support.

Have you been referred to GYN-Oncology? If yes, you can ask them about the length of time before you get your PET/MR results back.

Thank you for your reply, Helen. I will have the PET/MRI on the 10th of April and will see my gyne/oncologist the next morning. So, thankfully, I won't have to wait too long. Did you have to have surgery, radiation or chemo??
Yes, I was very upset with the original gyne in my hometown. She is young and when she finally did a speculum exam/biopsy said that she had never heard of vaginal cancer as it is so rare. But I have read that this type of cancer is slow growing, and I will hold onto the possibility that it is not too invasive.

@leahchawkins Yes, I can understand why you were very upset with your local gynecologist. I suppose that the majority of us who go to our gynecologist with complaints of bleeding and pink discharge when we are post-menopausal do not have cancer. But why not do a thorough physical exam to rule out cancer?

I live in a rural area and so my gynecologist referred me to Mayo Clinic which is 450 miles away. Within two weeks of the diagnosis from the biopsy I had a radical hysterectomy with removal of ovaries, fallopian tubes, and cervix. After surgery the cancer (endometroid adenocarcinoma which is slow growing and not very aggressive) was staged 1a. No other treatment was recommended after my surgery. Two years later a recurrence was found on the vaginal cuff by my nurse practitioner at Mayo Clinic when I returned for one of my active surveillance exams. She always does a thorough exam including external and internal with a speculum. I then had radiation therapy. I haven't had chemotherapy and since 2022 after I finished the radiation therapy there has been no evidence of cancer.

I recommend, if I haven't already done so, that when you see you gyn-oncologist that you bring someone with you. I bring my husband with me to all of my appointments as I need that extra set of ears and I need the support. I also write down any questions or concerns I have prior to my appointments.

I know how hard it is to wait. Will you please come back and let me know how you are feeling at any time? And especially after your appointment with your gyn-oncologist?

@leahchawkins Hello. I was diagnosed with primary vaginal cancer in March 2023. I am now 76 years old, had a long history of HPV and many years of immunosuppression (prednisone) for pulmonary sarcoidosis. My doctor said it was a perfect combo for developing vaginal cancer. I found the tumor on 2/17 during a shower and had an appointment the next day with my long-time ob-gyn. I was referred to a nearby NCI, had an MRI on 3/2, surgery to remove the tumor on 3/10, and a PET scan on 3/27. This was followed by external beam pelvic radiation 5 days a week for 7 weeks along with 6 rounds of weekly carboplatin infusions. As you can see, things moved quickly once I found the tumor. I was able to have my sister with me during all the chemo sessions and any meetings with the gyn-onc and/or radiologist. It helped immensely that she took notes. Since the hospital has MyChart, I saw all test results the same day although I didn't always understand them. I am scheduled for a surveillance MRI on 7/14, a regular internal exam with the gyn-onc on 7/23, and CT scan on 8/18. These follow-up tests are always anxiety provoking.
As I'm sure you have discovered, this is a very rare cancer about which very little is known. As best I can tell, treatment protocols are generally extrapolated from those used for cervical cancer since there are too few cases for controlled studies. As with any medical issues, be your own best advocate. Ask for what you need and ask questions until you get answers you can understand. If you need to do some research, be sure to stay on reputable sites like this one. At 2 years post surgery, I try to live as if all is well until I'm told otherwise. Best of luck with your journey. It's lonely but filled with unexpected kindnesses.

Oh, I will! Thank you. When I first say the gyne/onc here at Mayo, I brought my best friend, who is also a nurse, as I am. She remembered so much more than I did, and she was with me when I had the biopsies under GA. It was interesting to hear what she heard the doctor say versus my husband's recollection. lol.
My son, daughter and DIL (besides my husband) will be coming to the 'reveal' appointment after the testing. So, between all of us, I hope we will have a clear idea of what the next steps are. If I have to have radiation, I will have it at Mayo and any other treatment. Sadly, I have lost faith in the local docs. Once the local gyne referred me to the one and only local gyne/onc (in town), I waited and waited, and finally I said screw this, and called Mayo (as I see a pulmonologist here already so I was in the system), and saw my new gyne/onc and had the biopsies under GA before my local onc ever called me back for an appointment. But I am grateful for him and for this group!!!!

Hi!! Thank you for your reply. Wow!! I have a feeling that radiation/chemo will be my go-to treatment options, unless the 'invasive' issue is more serious. I fear metastases and/or rectal or urethral involvement. What I don't want is to have treatments which will diminish my quality of life. I also have a lung condition called mycobacterium avium complex/fortuitum, which I'm followed at Mayo for. It is a non-tuberculosis bacterium that most people may come in contact with, but they blow it out and it doesn't cause linger. But if you are somewhat immune compromised (which I guess I am), it will take up residence in your lungs and cause all kinds of problems. I am handling it well so far, and I've had it for almost 3 years. Did you have many side effects from the radiation or chemo?? I am already fatigued somewhat from my lung issue and worry about the exacerbation of that from the new possible treatment?? I hope for the best at your July appointments...

@leahchawkins It sounds like you, too, have a complicated situation. I was fortunate that the chemo I got was given as a radio-enhancer to supposedly amplify the effectiveness of the pelvic radiation. Aside from some fairly nasty constipation, I had no side effects from the chemo, no nausea at all. I was given oral meds for nausea but luckily never had to take any. The radiation, delivered to such a sensitive area 5 days a week, caused quite a bit of pain and some burns as time went on. I used multiple creams (Orignal healing Eucerin, Aquaphor, Preparation H) and some prescription Silvadene religiously after every radiation treatment and before bed each night and wore only cotton underwear. I also had pretty intense diarrhea after about 2 weeks of radiation but was mostly able to control it with Imodium. I was very tired, lost my appetite, and lost about 10 pounds very quickly. I also worried a great deal about diminished quality of life from chemoradiation after battling pulmonary sarcoidosis for 35 years. My gyn-onc patiently explained the pros and cons of my options and helped me decide that the short term pains were worth it for the potential longterm gains and possible "cure". Now, almost two years out from treatment, everything seems to work as it should rectally and in my urethra. The upcoming tests will tell the story. I hope you find a treatment option that you can be comfortable with. Again, push for all the information you need. Also, ask about any trials that might be available for you given your rare cancer. It can be scary but what you choose to do and when is totally up to you.It can help feeling you have a bit of control when it seems so much is out of your control. Ask for help when you need it and ask lots of questions. Best of luck!