1. < Gynecologic Cancers

Squamous Cell Vulvar Cancer: Who out there has this cancer?

Posted by bobette1 @bobette1, Oct 10, 2022

Just diagnosed a week ago. Who is out there with this cancer? Looking for advise, tips and what to expect as I start my journey. TIA

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

Mentor
Helen, Volunteer Mentor | @naturegirl5 | Jan 18, 2023
In reply to @afrikachef "Next week I will be having surgery to remove an invasive squamus carcenoma of the Vulvar...." + (show)
@afrikachef

Next week I will be having surgery to remove an invasive squamus carcenoma of the Vulvar. Sounds like they will be removing my genitals, ugh! Has anyone else gone through this process?

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Hello, @afrikachef Your post was moved to this Support Group because there is a wealth of wisdom here for squamous cell cancer of the vulva. I am hoping that other women in this discussion will share their experiences with you.

Our genitals - inside and out - are difficult to talk about, right? If you read through this discussion you'll see that some of the women have said just that. They are frightened, not sure what to ask, and are afraid of how they will feel after surgery. If you read my post from December 16 (above) you'll see how frightened and anxious I was when I was diagnosed with endometrial cancer.

Since your surgery is next week is it correct to assume that you have had a pre-surgical appointment and asked the surgeon what will be removed and what will be spared? Will you have another appointment with the surgeon (gyn-oncologist?) before surgery? If so, please consider writing your questions down and taking a close friend, family member or your partner with you to your appointment. I was so anxious during my appointments that I couldn't keep track of what the cancer care team including my surgeon told me. Having my partner next to me really helped a lot.

What can you do this evening to be kind to yourself? I had a very emotionally rough day today and I just got finished soaking in the bathtub. What is soothing for you?

REPLY
afrikachef | @afrikachef | Jan 18, 2023

Next week I will be having surgery to remove an invasive squamus carcenoma of the Vulvar. Sounds like they will be removing my genitals, ugh! Has anyone else gone through this process?

REPLY
1 reply
shanbam | @shanbam | Dec 20, 2022
In reply to @naturegirl5 "@shanbam Being frightened and full of fear about your diagnosis and the surgery is understandable. I..." + (show)
@naturegirl5

@shanbam Being frightened and full of fear about your diagnosis and the surgery is understandable. I was frightened too when I was diagnosed with uterine cancer. I was in some sort of altered state because I remember after talking with doctor that I took a wrong turn on my way home and wound up in a neighborhood I'd never been in before but felt like I should know my way out of. I did turn around and realize what I'd done but it shows you where our mind goes when we are that frightened.

There are members in this Support Group and in this particular discussion that will give you emotional support and share their stories.

When is your appointment with your gyn-oncologist? I suggest you write down your questions including what tissue will be removed and this will functionally affect you. Will it affect sexual function? Will you have pain after surgery and if so how will it be managed? Will the gyn-oncologist sample sentinel lymph nodes as is done for breast cancer and for uterine cancer to see if the cancer is in your lymph nodes? If the surgeon does not provide you with a drawing you might ask them to draw you a picture of what the surgery involves. I mention this because my surgeon did that for uterine cancer and I found the drawing helpful as she explain.

Do you have a family member, partner, spouse or close friend to accompany you to your appointment?

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Thank you SO MUCH for this information and taking the time to reply to me. I'm new to this group and forgot to check back!! Your suggestions for writing down questions and asking for a picture is absolutely invaluable! I am definitely going to do that. My first appointment is 1/3. I will let you know what happens if that's okay? Again, thank you Helen. Much love and appreciation, Shannon

REPLY
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Dec 16, 2022

@shanbam Being frightened and full of fear about your diagnosis and the surgery is understandable. I was frightened too when I was diagnosed with uterine cancer. I was in some sort of altered state because I remember after talking with doctor that I took a wrong turn on my way home and wound up in a neighborhood I'd never been in before but felt like I should know my way out of. I did turn around and realize what I'd done but it shows you where our mind goes when we are that frightened.

There are members in this Support Group and in this particular discussion that will give you emotional support and share their stories.

When is your appointment with your gyn-oncologist? I suggest you write down your questions including what tissue will be removed and this will functionally affect you. Will it affect sexual function? Will you have pain after surgery and if so how will it be managed? Will the gyn-oncologist sample sentinel lymph nodes as is done for breast cancer and for uterine cancer to see if the cancer is in your lymph nodes? If the surgeon does not provide you with a drawing you might ask them to draw you a picture of what the surgery involves. I mention this because my surgeon did that for uterine cancer and I found the drawing helpful as she explain.

Do you have a family member, partner, spouse or close friend to accompany you to your appointment?

REPLY
1 reply
shanbam | @shanbam | Dec 16, 2022
In reply to @ljchicago "They are free to reach out to me. Sadly, not new to it, but the first..." + (show)
@ljchicago

They are free to reach out to me. Sadly, not new to it, but the first one was literally "scarring" both physically and mentally, and as problems persist, it would be nice to "speak" to people. I can't find a local "in person" group. Even mastectomies have become openly spoken about, but I feel like women's genital areas are off-limits for any kind of talk. We even talked testicular cancer when it was Lance Armstrong! Why did I not even know I HAD a vulva, considering I had dealt with endometriosis, nerve pain in utero, 2 vulvectomies, 3 laps for cervix, partial ovarian removal, etc.??? You'd think I'd be an expert. I had to read up on the topic! But nothing prepared me for being told it was no big deal, when they can only see the surface. They basically fully diagnose/remove any cancer at the moment of surgery, so they can only guess how "bad" until they actually get you under...then you have no say. I felt mutilated after my first. They said it was necessary. The second was much less traumatic and hopeful for me in the future. I was already told at my follow up today that there is new growth, but mild, so it's already coming back! But they don't touch at VIN 1, so Im basically waiting for it to grow until they have to remove again. At my rate, probably early 2023. On top of that, I hit menopause pre-50 and have some spotted bleeding 1+ after, so multiple biopsies on the uterus today. One week to worry about that one. Prayers it's no big deal. Bobette, boxermomma and wheaton, reach out if you want. - Undesirable nearly 50 singleton mom of 3 female teens here in flyover country feeling all alone in this. Seriously could use some sisterhood here.

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Hey, thank you so much for your post. I can't tell you how much it means to me. It IS so hard, and embarrassing, to have this kind of diagnosis! Like, WHO wants to talk about this? I was given the results of my biopsy yesterday and it was already VIN II. Already have an appointment with a gyn oncologist for surgery. My cancerous area is around my vaginal opening and I'm terrified for the surgery. Will I be completely disfigured?? Sorry to ask but.... I'm scared!!

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jeanadair123 | @jeanadair123 | Dec 4, 2022
In reply to @naturegirl5 "@bobette1 Before my surgery for endometrial cancer I had a long conversation with my surgeon about..." + (show)
@naturegirl5

@bobette1 Before my surgery for endometrial cancer I had a long conversation with my surgeon about lymphedema. She did not bring it up - I did. During surgery she did a sentinel node procedure and removed a few lymph nodes on either side to check for cancer. These came back negative so no other lymph nodes were removed. Had any of these shown cancer she would have removed all of the lymph nodes in the pelvic area and then lymphedema could have been a consequence. Is there a way to avoid lymphedema? Maybe there is as it could depend on which and how many lymph nodes are removed.

It sounds like from what you wrote that that the lymph nodes were suspect for cancer also so these were removed. Is that an accurate assumption? All of the tissue removed during surgery would have been sent to pathology including the lymph nodes and checked for cancer. So the pathology report will tell your surgeon where the cancer was found and then the surgeon can tell you that.

Not everyone experiences lymphedema. There are treatment options and one that I've heard of is massage by a massage therapist who is trained and certified in lymph drainage and edema. Here is a good description of treatments by Mayo Clinic.

Lymphedema
https://www.mayoclinic.org/diseases-conditions/lymphedema/diagnosis-treatment/drc-20374687
Does this help?

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This was my first cancer so I had no idea to even ask about lymphedema or removal of lymph nodes, I don’t even know if the lymph nodes removed were cancerous the doc said he got everything. I was so naive and in shock I don’t know what to ask.

REPLY
bobette1 | @bobette1 | Dec 4, 2022
In reply to @naturegirl5 "@bobette1 Before my surgery for endometrial cancer I had a long conversation with my surgeon about..." + (show)
@naturegirl5

@bobette1 Before my surgery for endometrial cancer I had a long conversation with my surgeon about lymphedema. She did not bring it up - I did. During surgery she did a sentinel node procedure and removed a few lymph nodes on either side to check for cancer. These came back negative so no other lymph nodes were removed. Had any of these shown cancer she would have removed all of the lymph nodes in the pelvic area and then lymphedema could have been a consequence. Is there a way to avoid lymphedema? Maybe there is as it could depend on which and how many lymph nodes are removed.

It sounds like from what you wrote that that the lymph nodes were suspect for cancer also so these were removed. Is that an accurate assumption? All of the tissue removed during surgery would have been sent to pathology including the lymph nodes and checked for cancer. So the pathology report will tell your surgeon where the cancer was found and then the surgeon can tell you that.

Not everyone experiences lymphedema. There are treatment options and one that I've heard of is massage by a massage therapist who is trained and certified in lymph drainage and edema. Here is a good description of treatments by Mayo Clinic.

Lymphedema
https://www.mayoclinic.org/diseases-conditions/lymphedema/diagnosis-treatment/drc-20374687
Does this help?

Jump to this post

Yes that is correct that the lymph nodes on the left side positive for cancer. They took out some on the right side too. I go back tomorrow and will ask more questions. Thanks for the info. Glad to know I am not alone in my struggle.

REPLY
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Dec 4, 2022
In reply to @bobette1 "So it sounds like there is no way to avoid .lymphedema. I had no idea. Thanks..." + (show)
@bobette1

So it sounds like there is no way to avoid .lymphedema. I had no idea. Thanks for the info. #cancersucks!!!!!!

Jump to this post

@bobette1 Before my surgery for endometrial cancer I had a long conversation with my surgeon about lymphedema. She did not bring it up - I did. During surgery she did a sentinel node procedure and removed a few lymph nodes on either side to check for cancer. These came back negative so no other lymph nodes were removed. Had any of these shown cancer she would have removed all of the lymph nodes in the pelvic area and then lymphedema could have been a consequence. Is there a way to avoid lymphedema? Maybe there is as it could depend on which and how many lymph nodes are removed.

It sounds like from what you wrote that that the lymph nodes were suspect for cancer also so these were removed. Is that an accurate assumption? All of the tissue removed during surgery would have been sent to pathology including the lymph nodes and checked for cancer. So the pathology report will tell your surgeon where the cancer was found and then the surgeon can tell you that.

Not everyone experiences lymphedema. There are treatment options and one that I've heard of is massage by a massage therapist who is trained and certified in lymph drainage and edema. Here is a good description of treatments by Mayo Clinic.

Lymphedema
https://www.mayoclinic.org/diseases-conditions/lymphedema/diagnosis-treatment/drc-20374687
Does this help?

REPLY
2 replies
jeanadair123 | @jeanadair123 | Dec 4, 2022
In reply to @bobette1 "So it sounds like there is no way to avoid .lymphedema. I had no idea. Thanks..." + (show)
@bobette1

So it sounds like there is no way to avoid .lymphedema. I had no idea. Thanks for the info. #cancersucks!!!!!!

Jump to this post

Not everyone gets it.
I do think doctors should make you aware of this.
It’s an inconvenience but better than the alternative. 😁

REPLY
bobette1 | @bobette1 | Dec 4, 2022

So it sounds like there is no way to avoid .lymphedema. I had no idea. Thanks for the info. #cancersucks!!!!!!

REPLY
2 replies
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