Sarcomatoid squamous cell carcinoma on the vulva

Posted by Yycmama @efajardoyyc, May 5 10:47am

Canadian from Alberta here. I just recently had a radical vulvectomy and radical inguinal bilateral dissection 2 1/2 weeks ago. Got my surgical report showing sarcomatoid squamous cell carcinoma with positive margin and one lymph node involved. Also got a ct scan the other day, and report shows metastasis in the lung. I am booked for a follow up 2 weeks from now with my surgeon at the cancer center. We also have a phone call booked today to discuss these results. I know they want me to heal first before any treatment starts, but now that my scan show lung metastasis I’m worried that my treatment wouldn’t start at least 3 weeks from now( 5+ weeks post of since my in person follow up is not until two weeks from now. Having seen how my tumor/cancer keep progressing in matter of weeks, I’m worried that there would be more significant metastasis. Does anyone have any similar experience? How soon were you able to get treatment after surgery(chemo/immunotherapy/radiation/others? My surgical path shows stage 3a but this is not considering the lung metastasis showing in my ct scan? Also anyone went through o Mayo or other cancer centers like MD Anderson for more timely treatments?

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

Helen, Volunteer Mentor | @naturegirl5 | May 6 8:53am

@efajardoyyc Welcome to Mayo Clinic Connect and to our support group. There are women here in our support group who have been diagnosed with vulvar cancer although their experience may be different than yours. While we wait for them to respond I would like to share a few thoughts.

It makes sense that you are frightened that waiting three weeks allows the cancer to continue in your lungs. You posted 21 hours ago which may have been last night? What time is your phone call booked for today? Will you be talking with your oncologist so you can ask the questions you are asking here?

I’m going to tag @dlgbb. She is also in Alberta and while her diagnosis was different than yours she was treated in Calgary and shared that her oncologist and cancer care team were timely and excellent.

If you’d like to see if you can be seen at Mayo Clinic more quickly you can first inquire at the following link:

Mayo Clinic:

— http://mayocl.in/1mtmR63

Many of the women in our support group have been to MD Anderson.

I think this is something to talk with your oncologist about. If you’d like to be seen at Mayo or at MD Anderson, a referral from your own doctor makes the process more expedient.

I suggest writing your questions down and taking notes during your phone call. Also, is there someone who can sit with you during the phone call? Maybe putting the call on speaker phone so you can both hear what the doctor says? I do this because there are times I’ve misunderstood or not completely processed what I’ve heard and with another “set of ears” I can validate what was actually said.

Will you come back and let me know what you find out today in your phone call?

dlgbb | @dlgbb | May 6 9:52pm

@naturegirl5 @efajardoyyc
Hello, I am Diana. I am also from Alberta. I had a hysteroscopy which diagnosed grade 3 adenocarcinoma (endometrial). I had been very worried because we have all heard how long wait times are within Alberta for treatment, and like you, I did not want to wait with a scary diagnosis. When my gynaecologist sent in the referral, I was very afraid that it would be months before I would be seen in Calgary at the Arthur J Childs Cancer Centre. This did NOT happen. I had an appointment within 2 weeks, and my surgery (removal of uterus, ovaries, fallopian tubes, cervix, and left side pelvic lymphadenectomy). I had my 6 weeks surgical checkup and was presented with the options for radiation. I decided within a day, and had my mapping session within a week, with treatments starting less than 2 weeks after that. Things moved very quickly. My care was so good, and I had total confidence in the care team, from the surgeon to the radiation oncologist to the radiation technologists. When I was at my original consultation and I was worrying about wait times and what it would mean with my cancer being grade 3, I was reassured that when you have cancer, you will get the care you need when you need it. They will not make you wait if it is not safe to do so. In your case, I am thinking that due to the stress on your body from your surgery, they need you to heal and recover before you start the next stage of your treatment. I, too, had looked into treatment at Mayo and had begun the process. They were wonderful to deal with, and honestly if things hadn’t happened quickly here, I was very prepared to seek treatment elsewhere. I hope that your phone appointment today gave you more information and hopefully some peace of mind.

Helen, Volunteer Mentor | @naturegirl5 | May 7 6:38am

@efajardoyyc Did you speak with your oncologist yesterday? Did you get any new information and an opportunity to ask questions?

amyb5 | @amyb5 | May 8 11:43am

Im sorry for this anxiety producing wait period. Although I had a different (very aggressive) cancer, I felt the same way. It was explained to me that Chemotherapy stops all healing, so it’s important to recovery from the surgery, before starting therapy. I found that everything moved very quickly, once enough recovery time had passed. I did go to MD Andersen, for a second opinion. Unfortunately it was a terrible experience for me.

Colleen Young, Connect Director | @colleenyoung | May 19 10:31am

@efajardoyyc, thinking of you as you prepare for your post surgery follow-up appointment. I'll be interested to hear how it goes and next steps for you.