Vulvar Cancer: Anyone else?

Radiation was rough because it is everyday during the week. Your skin will feel like it is on fire. Was ok for first week or two. Consider it like a bad sunburn. They should give u some creams that do help. Best of luck....do u know when it starts? Are you doing chemo too?

I am new to this group. Two weeks ago I had a radical Vulvectomy with lymph node removal. Recovery has been slow, I’m just now getting off the pain pills. My stitches broke open the first day home so I had a lot of bleeding which is finally under control. The lymph node incisions have become very large and doctor says they are the size of softballs and will need to be drained next week. But my question is about sharing all this information with my adult children. How do any of you talk about this very personal issue? I will start radiation soon but haven’t told anyone except my husband.

I go for a yearly pap smear. I have a history of UTIs ever since I was a kid. So I'm having an issue with that right now because I have all the symptoms yet my urinalysis comes back as negative. No bacteria.
The gynecologist I had retired but my pap smear last year showed a small squamous cell on my cervix, which she was going to keep an eye on. I finally found a woman gynecologist and I am going to have that issue checked out on monday. I would really like to have all my woman parts taken out at this point for fear that it's just a matter of time before all of them get hit with cancerous cells.

Personally I think it's better just to be upfront and honest. I don't have children but I was having the same issue with waiting to tell my mother. It got so built up inside my head but that before I could get it out I was crying and that was the first time I cried over it. She wasn't crying she just wanted the facts. So my reaction didn't affect her reaction but usually that is the case so I would just be direct and matter of fact about it.

@buffalogal I am now in the age group (71-years-old) that my mother was when she had serious health problems. My mother often kept upsetting news to herself saying that she did not want to upset me or didn’t think I’d want to know. By the time she was in her mid-60’s she understood, because I told her over and over again, that I did want to know. I still remember the day, time, and place, I was when she called to tell me that she had been diagnosed with lung cancer. I quickly made plane reservations as she lived on the West Coast where I grew up and by then I was in New England. I wanted to spend as much as I could with her and that also included going to her appointments and radiation therapy with her.

I think it’s difficult for a mother to tell their children such sad news. @buffalogal I imagine that it’s possible you could be more anxious about telling your adult children because you haven’t done it yet and once the news is out in the open you will be less worried. Of course I don’t know anything about your relationship with your children. What does your husband say about all this since he is also keeping quiet about this major health problem?

@buffalogal, serious illness is personal, but at the same time it touches everyone around you too. Like @naturegirl5, I would want my mom to tell me if she had a diagnosis of cancer. Or heart disease, kidney disease, or stomach relux or anything that affects her daily life, quality of life or how she lives life.

If you don't mind, I'd like to ask some questions back to you. Don't feel obliged to answer anything you do not wish to share.

Have you not yet told your children in part because of the location of the cancer? Would you hesitate to tell them about your health if you were diagnosed with a heart valve issue?

Is your hesitation because of how your children have reacted to serious news in the past? Do they react in a way that is not helpful for you and your husband?

@buffalogal, I too, struggled with telling my two adult sons. I think it was because I didn’t want to believe my diagnosis, invasive Paget’s disease of the vulva. I did tell them as I felt they needed to know. They were initially upset, rightly so. But they have been very supportive and help where they can. I share as much detail as they are willing to hear. Sometimes, they tell me, Mom, I don’t need to hear this and that is fine. I understand.

I do have a brother who has listened to every detail. People are different. In the end, telling people helps me deal with everything that is happening .

I had a radical vulvectomy in September. The vulva and clitoris were removed along with sentinel lymph nodes on both sides of my groin. I am fortunate that I don’t need to have radiation or chemotherapy at this time.

I, too have been diagnosed with vulvar melanoma and will be going to Mayo on Dec. 6th to see a gynecologic oncologist. What does sugar have to do with the size of the tumor being removed? I always crave sugar but did not have knowledge that it would increase the tumor?

I had a biopsy from my ob/gyn and it was vulvar melanoma. Have an appt. now at mayo with a gynecologist oncologist on Dec 6th. Will she have to do another biopsy or do a pet scan to find out if it is in the lymph nodes?

@scm I will answer your question from my experience at Mayo when I was diagnosed with endometrial cancer and referred to Gyn-oncology. My slides from pathology that contained my biopsy were sent to Mayo. The Mayo pathologist examined those slides and provided their diagnosis. In my case for endometrial cancer the gyn/oncologist explained that she would « sample » my lymph nodes in something called sentinel lymph node biopsy. I did not have any scans before my surgery (hysterectomy). I don’t know enough about vulvar melanoma but perhaps one of our members here can answer that question. What will likely happen is that you will first meet with the gyn/oncologist who will talk with you. If other tests are needed such as a PET scan then that will be ordered and can usually be done while you are already at Mayo.

Do you have a patient portal on Mayo Clinic? If not, now that you have an appointment you’ve been assigned a Mayo Patient Number and your can register for the patient portal. The patient portal will list all of your appointments and allows for messaging back and forth to your providers once you’ve been seen.

Mayo Clinic Patient Portal:

— https://www.mayoclinichealthsystem.org/patient-online-services