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I am trying to find information from others who have had this treatment. My apointment is soon but my anxiety needs information sooner.
@vsinn2000 Welcome to Mayo Connect and thank you for your post. While I cannot offer any information based on personal experience, I can appreciate the fact that, as you say, “my anxiety needs information sooner.” Here is some information about vulvar cancer from Mayo Clinic’s website, https://www.mayoclinic.org/diseases-conditions/vulvar-cancer/care-at-mayo-clinic/mac-20368108.
We look forward to getting to know you better, @vsinn2000. If you are comfortable sharing more, let us know when you were diagnosed and if the diagnosis came about from a biopsy. Also, do you live near one of the Mayo facilities (they are in Minnesota, Florida and Arizona)?
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Thank you for the warm welcome and information. I had a biopsy October 31st and got the results November 2nd. My first gyn oncology apointment is the 8th. So it’s very new. I live in SE Iowa.
From my reading I see that this is a rare type of cancer. I’ve had several surgeries for neuroendocrine tumors (also considered a rare malignancy) so I understand (just a little) as to how you are feeling.
If you are comfortable doing so, will you update us after your appointment on the 8th?
We wish you well.
I will be glad to update the plan from my apointment. Not knowing what to expect horrifies me. I’m one of those that always needs a plan and heaven forbid that plan fail! I have the feeling I’m going to be in meltdown mode frequently, unfortunately. But that being said, my bull headed Irish side refuses to do anything less than fight.
I agree. The meltdown times will come and go, but the fighting spirit will keep you going.
I add my welcome. There are a couple older discussions about vulvar cancer that you may wish to read:
Vulvar Cancer https://connect.mayoclinic.org/discussion/vukva-cancer/
Vulvarian Cancer https://connect.mayoclinic.org/discussion/vulvarian-cancer/
I’m also tagging @dee4484 @dianedelion @2kindhrtd @jmgm and @grandma25 in the hopes that they may return to Connect to share their experiences with treatment, in particular radiation therapy.
Vsinn, Do you know if you are to have radiation therapy? Have treatment options been discussed already or is that what will be discussed in your upcoming appointment?
I believe the discussion was radiation to try and shrink it, then surgery. I think I’m ready for that plan but I’m a bit worried about 5 days on then 2 days off because of the distance to the hospital. We are about 50 miles one way. I’m really struggling with the number of people involved. I get the care team aspect, but I am an incredibly private person and just can’t wrap my head around the degree of dignity that is going to be taken away. It may sound silly for that to be my struggle given the situation but I can’t get past it. I so appreciate your help. Is it normal for my concerns and anxiety to get out of control late at night?
Your feelings, especially at night, are completely understandable. My surgery was in the upper digestive tract and involved a 7 day hospital stay and I was told there would be an NG tube in place for several days (it is a tube that goes down the nose into the stomach). Prior to the surgery (and late at night) I would worry about that silly NG tube and not being able to breathe and all other sorts of things which would never occur.
I know this easier said than done – but try as much as possible to reign in your worries. I’m sure that everyone will be respectful of your privacy and will treat you with dignity.
This will be difficult, but just take it one step at a time.
I’m sure the NG tube was a struggle to anticipate and then actually experience. Seven days is a long stay! Given the location I know I have a snowballs chance of expecting privacy. But just thinking of becoming “public viewing ” is making me cry now. It’s the ugliest thing I’ve seen, I balk at my husband getting a glance, and my gyn is the same one I’ve had for 20 years so she totally understands my issues.
I’m sure everyone will understand how difficult this is for you! I hope that you are surrounded with very kind, supportive medical people.
Thank you for your words of encouragement. I am hopeful.
You will get through this!
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