Diagnosis: Stage 3 SQUAMOUS CELL CARCINOMA vaginal cancer

I am 59 and was diagnosed with above at the end of November 2016. I had gone to my gynecologist for annual exam and pep test. (I had had a total hysterectomy 16 yrs earlier due to pre-cancerous cells). She could not perform the pep due to amount of blood. She sent me to an oncologist. She did her examination and said she would have to take me to surgery and knock me out. During surgery she took samples to send to pathology and found a tumor. Pathology report came back with above. The team: oncologist, chemo Dr, radiation Dr.  After getting a plan(I guess they had to do some research since it is not common) we had a meeting to discuss. Well, they told me what it was going to be. 1st thing was a PET scan and MRI. Tumor lit up along with a lymph node, graduated to stage 3. Before treatment was to start, I had to go to University of Miami to oncologist down there who does brachythetapy for an exam just in case I would need internal radiation. Treatment was 6 weeks of external radiation M-F and chemo, Cisplatin, once a week. The 7th week would be directed at the lymph node. An MRI was done during 7th week. Tumor had shrunk some, lymph node was larger. Radiation Dr said not to worry cause it was being irritated by radiation.  They then said i had to go to Miami. At first it was 8 sessions-1st and last and 2 days in between. The procedure was to insert an apparatus with rods into me and a catheter since I wasn't allowed to move with rods. They were going to give me a PCA pump(morphine) for pain management. I told them i wanted an epidural. If I couldn't move then I might as well get everything knocked out instead of drugs. "We are not set up for that". WTF? ?? I did talk them into a spinal.(I've had 2 knee replacements plus numerous other surgeries. I know a lot about pain management. Well, post surgery was a total cluster f@$#. When I was cognitive, they were still putting pump together. Once together they ordered what the Dr prescribed from their pharmacy. Then were told pharmacy didn't have that. They sat around trying to decide what to do. Meanwhile the spinal is wearing off. They finally decide to call Dr for new script. By the time they get pump going I'm I. Severe pain on my way to first treatment.  They were suppose to give a heavy dose once pump was going but they didn't. Pump will only give extra medication every 10 minutes when button is pushed. Felt like I was pushing button through my hand.they finally gave me something orally. Eventually they changed me over to Dilaudid. Once on that, I don't remember much except bits and pieces.  They did change treatments from 5 days to 3. I was so out of Wednesday night when my brother came to get me, he didn't want to take me. It took a couple of days to feel somewhat cognitive. Since all treatments, for the most part, stamina is better. Still have bouts of diarrhea. Urinate frequently. Dr just gave me some medication to help with that. Before all this started I had a slight yellowish discharge. During 7 week treatment it went away. After brachythetapy it came back. Used like 1 pad per day. Now it's heavier and using 2 "bladder leakage"pads, it is now dark mustard color. I did have a PET scan 3 months post treatments. Was told they'd do another in 3 months.no treatments at this time. I have seen oncologist for an exam. Still couldn't do PAP.  From what she could feel/see looks like interior at been burned. Which I guess with all treatments it has.

  • Hi  

    I am so sorry to hear about what you have been going through. It sounds like the most appalling treatment. Do I understand that you have a primary cancer in the vagina? We are mostly UK based here in the Macmillan group. I have had brachytherapy but this was a short burst treatment after 33 days of the external pelvic radiation. They did just two treatments of ten minutes each to "sterilise the vaginal vault" and I had no discernible side effects from it. 

    I hope you feel better soon

    Love and hugs xxxx

  • Yes.cervix, ovaries and top part of vagina were removed years ago but still got the cancer. I don't know how long the brachythetapy sessions were.I know while I was out they inserted rods in directly into tumor. They would do a CAT scan before session to make sure rods were placed correctly then take me into another room to hook me up.  After 1st or 2nd treatment they did remove 1 or 2 rods which was painful.one of the Dr."s kept patting my should "it's ok". I told him to stop and it wasn't ok.of course it was a guy saying that.