vulvar cancer

funbeadgirl said:

You are not alone

I am sorry that you are feeling so scared and uncertain as to what to do next. I am sure that not having insurance also weighs heavily on your mind because getting medical treatment is very expensive. With that being said, the reality is , if you suspect or even in the slightest feel anxious about what is going on, you really must find a way to have it checked out. Perhaps when you go back for the biopsy results you can talk to the doctor about your previous biopsies and explain your concern.

I know that all clinics and hospitals have financial consultants that can help you to find a way to get the help you need, and help you find a way to  get it paid for. Start making phone calls, explain your situation and ask for help, you will be directed to the right organization/person to help you. Maybe a free clinic in your area, ask at PP? Look in the phone book, or call your local hospital and ask for information..it's a place to start.

It is probable that there is nothing wrong, but getting a straight answer could ally your fears and anxiety. I think the area you are referring to is your vulvar area and not really the vagina, I am glad you are doing regular exams of the area, all women should be doing a monthly self exam of the vulvar area, it can develope lumps and bumps and other issues, most of which are not related to cancer, but can be treated successfully.

I have had cancer 4 times in past 4 years, believe me, I know that you only get what you need by being proactive and pursuing what you need. Maybe some of the other ladies on this forum , who also have not had insurance can give you ideas on how to get the treatment you need.

I wish you the best, you are so young and have your entire life ahead of you.

Hi, I am 43 and was diagnosed with epithiliod sarcoma proximal type of the vulvar region in August. I have had surgery and they removed all of it. Now they want to do radiation.

I am so afraid! They say six weeks of radiation is what they recommend . Any other women out there who could give me some advice? 

How did your burns turn out?

Mastercarver27 said:

Help

Hi, I am 43 and was diagnosed with epithiliod sarcoma proximal type of the vulvar region in August. I have had surgery and they removed all of it. Now they want to do radiation.

I am so afraid! They say six weeks of radiation is what they recommend . Any other women out there who could give me some advice? 

How did your burns turn out?

I'm sorry to hear that you have to go through all this. I hope radiation will go quickly and smoothly for you, but be prepared.

I haven't had radiation for a genital cancer, but for anal cancer, which effects the vagina, too. I had about 30 doses. Even with all the literature the radiation oncologist gave me to read, I was unprepared for the reality of the situation. In addition, I had it a little worse than most of the people on the anal cancer forum, but not as bad as some of them.

Most of the anal cancer people went through the entire series without breaks, even when it hurt. I had to take breaks from the treatments both due to the exquisite radiation pain and from the neutropenia & fevers (dangerously low white blood cells) from the chemotherapy I had. The rad-onc assured me that taking breaks would not effect the therapy as what counts is the total dose I got, not that I got them in an unbroken row. It's not a race.

You will get burns on the skin outside of your body. I am kinda fair-skinned, but my skin turned a sickly grey-black and eventually sloughed off in bloody sheets. 4-1/2 months later, it has lightened up a lot, but still looks like a very deep tan. (My oncologist recommended that I use a whitening cream when I asked if my bathing suit days were over.) Very little of my pubic hair has returned.

I expected exterior radiation burning, but was shocked to discover that you get burns inside, too. >_<  I have some vaginal stenosis now that I need to use vaginal dilators to correct. I have lower pelvic achiness/pain, low backaches, and some nasty anal pain with bowel movements, all from radiation.

My radiation was deep into my pelvis. Along with the chemo effecting my interior GI cells, the beams gave me a whopping radiation enteritis - industrial drums-full of neon yellow water passed multi-times a day. It was very painful and dehydrating all by itself.

My cancer was stage III-A, possibly III-B, so the beams were directed at my primary anal tumor and the metasticized rectal lymph nodes as well as possibly effected groin lymph nodes. If your cancer was more superficial, as I hope it was, then the beams won't need to be so widespread or deep on you.

1. Don't put anything on your skin that can effect the radiation beams in any way. For example, zinc oxide can halp soothe your frazzled skin, but will block or deflect the beams. Check with the rad-onc on what you can freely use on sore skin.

2. Aquaphor is frequently recommended for sore skin, but has lanolin in it. If you find that irritating to your skin or are a vegetarian, ask about an alternative. If you get very burned, the doc may want to prescribe Silvadene, a burn cream. It has sulfa in it, though, so if you are allergic, don't take it.

3. If it hurts to urinate or deficate, try doing so in a warm tub of water. Be prepared for possible incontinence if your anus or bladder is inflammed. If you get it, it will most likely get better as you heal.

4. Don't use toilet paper until you are well-healed. The nicest stuff will feel like coarse sandpaper. Try using a spray bottle or peri-bottle of warm water to clean yourself.

- Although expensive, "Comfort Shield Barrier Cream Cloths" by Sage Products are quite soothing. You can find them on Amazon; I get mine from http://www.amazon.com/Comfort®-Shield-Incontinence-Barrier-Cloths/dp/B006GQOJMW/ref=sr_1_4?ie=UTF8&amp;qid=1415602495&amp;sr=8-4&amp;keywords=comfort+shield+barrier+cream+cloths . They are used in many hospitals for post-partum patients and for debiltated patients with skin issues. They can be micro-waved for warmth. They feel like soothing rectangular clouds! The three-pack  has slightly smaller cloths than the larger packs. The bigger cloths are about 8-1/2" x 8-1/2", big enough to cut into four toilet-paper-sized squares, only infinitely more soothing and effective. If you buy them, don't flush them as they are too thick and sturdy.

- They are expensive, but I'm not ready to part with them yet. Since my exterior skin is now well-healed, I use toilet paper for urine, so I save some money there. But my poor little butt still needs them.

5. Do not put up with pain! Pain is a real stressor, keeps you from getting enough rest, and inhibits your immune system. Insist on adequate pain relief. The vast amount of pain medication I used was for the radiation burns and not for the cancer. When my skin was sloughing off, I was hospitalized with a WBC of 0.2 and platelets of 14,000, both very low, that interfered with healing. I was in terrible pain from the burns so that they tripled my Fentanyl patch dose and put me on morphine for break-through pain. Then I had to insist that they give me the morphine before I had BMs because of the excruciating nature of the pain. But I am hoping that your beams won't need to be so deep and widespread, so will be easier to take.

6. Drink as much fluid as you can squeeze in and eat whatever high protein foods appeal to you as an aide in healing. I was very nauseated during treatment - even the smell of plastics, cleaning fluids, even the normal saline they used to flush my medi-port line all instantly made me gag and wretch uncontrollably. Oral anti-nausea meds didn't help, only IV meds. I assume (just a guess here) that my nausea was chemotherapy-induced and not radiation-induced. Nausea may not be a problem for you getting only radiation, but you should ask the rad-onc about it.

7. The rad-onc will visually check your skin weekly and more often as needed. It may be uncomfortable or even embarrassing for you, but it's necssary to stay ahead of severe burn problems. If it gets very bad, they will require you to stop, for at least a few days or more, for healing.

8. If you have nobody to take you to the radiation center if you start having severe fatigue or pain w/pain meds, ask your local American Cancer Society about a ride program and ask the radiation center itself for other possible programs.

9. Ask the doc or Registered Dietician what vitamins and minerals you should take. Radiation can interfere with bone density, so you should ask about calcium and vitamin D supplementation.

10. Rest, rest, then rest!!!

If you have further questions or problems, post them as they crop up. Don't worry or suffer alone.

All the best to you.

Please let me know if you have set up a website.  I have so many questions.  I am a recent survivor, nervous all the time that they are missing something because despite of all my efforts otherwise, I am simply not getting my energy back.  I sympathise with you all so much, and would love to hear how you all are doing, esspecialy since it has been quite a while since most of you have posted.  The hardest part of this is no one understands, they have never even heard of this cancer.

Ruby3 said:

FACE BOOK
As a matter of interest, are any of you ladies on face book. There is an inbox for private messages.

Please let me know. My email address is: mg.ruby3@gmail.com

I don't want to write about cancer on facebook as it is meant to be a happy site but it will be easier to send messages to the private in box. What do you think??

I'm on FB.... may i look you and and ask you to be a friend? only private messages of course.... I too had breast cancer.

kmygil said:

Hi Kevann,

I'm sorry you have this diagnosis. I will tell you what I know from my mother's experience with vulva cancer. She thought she had an ingrown hair, but the knot just stayed there until it ulcerated. At that point she was diagnosed with vulva cancer. She had to go through surgery. It is a tough surgery from our perspective, because they have to take so much to be sure of margins. However, it turned out that my mother's vulva cancer was a metastasis from colon cancer. The scans had not caught it because it was sort of hidden in the hepatic flexure. I urge you to have your colon checked out as well. At any rate, before the colon cancer was found the doctors did not indicate that any radiation or chemo would be required. Unfortunately, the colon cancer broke through my mother's intestinal wall and she was too debilitated to make it at that point. The point being, you can definitely survive vulva cancer, but to make sure that this is not a secondary cancer. Please keep us up to date. We are praying for you and sending positive energy your way.

Hugs,
Kirsten

my mom is not having a good time...was clear of the vulvar cancer for 9 years. thought she was clear...now it is back with a vengeance!  she has had surgeries, radiation and now it's chemo time.

i am scared. i joined this group to learn about how others with this cancer are fairing, what methods are working for them etc.

but i don't know how to post to the thread, so sorry kirsten, i only knew how to reply.

this site is great, by the way...and have already been reading many of the entries and following the threads.  i have a feelilng i may well be saying goodbye to my mother soon. a sad thought, yet clearly, even with that dire result, i am not alone. 

thanks for this place, to talk about a cancer i'd never heard of until it attacked my mom.