After care from surgery

Hi Jane - I am sorry I cant help you in your journey as havent even had my biopsy done, but just felt sad no one had responded to you.  I hope your pain has eased and that you are in a better place now?  I am just busy researching and trying to even get my head round what is going on. I feel like running away right now.  I cant even see me going through with any surgery if required - would rather just live my life and see what happens.  Sounds stupid I know.  You are a lot younger than me, and I am truly sorry your having to face this.  I hope you have been better looked after and feeling better than you were when you posted this.  All the very best.

Hi dianered

i ended up back in hospital for 4 days and a wound specialist attached a wound vac on my wound site on my groin. Unfortunately I am still on antibiotics as still have infection on my wound I have the community nurse come in 3 times a week to change dressing which is very painful for when  it is taking of off course.I just take pain killers a hour before she arrives to ease the pain. Coming up to 9 weeks Thursday since I had lymph nodes incision I am very drained and tired but I am on high dosage off antibiotics can not see any light at end off tunnel.my actual surgery on my vulvar healed excellent I had no trouble at all I had my right Labia removed and radical wide local excision – the cancerous tissue removed I had no trouble off healing at all was not sore I weed without stinging did have a catheter on for 4days in hospital which most probably helped and that is all heeled now and you can not even tell I have had anything done down there and to be honest you cannot tell I have only one labia. They only did the lymph node dissection as a precaution the good news the cancer as not spread to lymph nodes also the surgery they have removed all cancer and precancerous cells.so no further treatment they just keep checking it every 3 months at moment. Unfortunately I  am one off the unlucky ones suffering like I am with infections but i do think if it was properly dressed from day one it would be a different story instead they tell you to keep it uncovered to let air to it I think they removed stitches to soon when drainage tube was taking out and should off been restitch as the infection is where drainage tube was inserted. I still don’t know how long I have vac on for and when I will be recovered I wish I never had lymph nodes removed now especially I was only diagnosed with stage 1 cancer and they reckon they removed most off cancer when biopsy was done it was precancerous cells I had removed. Lymph nodes only done as precaution never again I am having them removed. Thank you for your reply and please do have surgery if needed especially if they have caught it early just think twice on lymph nodes if they are only doing it as precaution. 

So sorry you have gone through such a lot.  I get what you are saying re lymph nodes and to be honest that is the part that I have seen most negative comments about.  So as you say I would be thinking twice about that procedure.  I am only at the beginning of this and feeling so overwhelmed as thought I just had vaginal atrophy and cant understand how I have ended up here.  I am going to see oncologist tomorrow and have my fingers crossed they will say its nothing and I dont even need biopsy.  But if I do can you tell me how that is and does it take long to heal, as I am due to go on holiday on Saturday.  This all seems very trivial when put into perspective of what you are going through.  I really hope you get sorted soon and that your wound heals quickly for you. Thank you for your reply.

Jane, It is a hard road to be on and I understand the feelings that you now wish you wouldn't have had the sentinel nodes out being that they were clean anyway. Mine were the same way; but because it can spread it is always better to be safe than sorry still remains to be my motto. You may find that you swell more in the thigh and groin area. I am plus size so I've been told it is tougher on heavier women. 

I hope by now that your infection is finally under control. Infections can definitely be painful and prolong your healing so it's so unfortunate. I am glad you have nurses coming in to change your dressing and that you are able to have that wound vac system to speed up the healing process. I had to have some crazy major plastic surgery last year and because my tissue was so damaged from radiation all of mine opened up too and had to be packed with vinegar soaked gauze three times a day for three months so I totally get that having an infections sucks. Mine didn't get infected but it was awful.

Keep us posted on how you are doing. It must have just been a busy time for our fellow warriors because normally people reply right away.
Take care,

Lisa

Dianered, I will try to tell you about how the biopsy usually works but all doctors do things a bit differently depending on the clinic or hospital or gyne or oncologist.

They may want to do a coloposcopy first which is basically like a vinegar solution that they put on the areas of concern and look with a microscope. This solution helps them detect skin pigment changes. They will then inject a numbing solution with a needle. This will sting while it is going in but it is not unbearable; of course the closer it is to your clitoris or urethra can hurt worse. Once that shot is done they will do the biopsy; most of the time it is a punch biopsy. That is a tool that is as big as the diameter of a number 2 pencil eraser...you won't feel a thing. 

Some doctors just leave it open and heal on it's own, some cauterize the spot, some put a dis-solvable stitch in it. You should use a pad in your underwear because you may bleed for a couple days while it's healing. I always got a squirt bottle from them to fill with warm water in order to squirt down there while you are peeing and it helps with any burning from your urine. It can take up to two weeks for results and it is the hardest and longest wait but try to not go crazy. 

The time of healing depends on the person and your pain tolerance, what you do for a living and how active you are. You will be down for sure for probably a day or two if its just one biopsy. I've had hundreds before and sometimes I go back to work the next day and some times it takes 3-4 days for a biopsy. This last one I just had in April though, took about 5 days to stop stinging. I wish you all the best!

Lisa

Biopsy was taken from my right labia and from an area if they suspected anything I waited two weeks for my appointment. I had it done on a Wednesday and returned to work on the Friday. I was awake when I had it done just stings what stuff they put on other than that didn’t feel anything. It was a bit uncomfortable for a couple off days and going to toilet was uncomfortable for a day or two other than that I was fine. Two weeks after the biopsy was ask to go for a CT scan. Had scan with in 4 days as there was a cancellation. 4 days after CT scan had a appointment to go back see oncologist where I was told I had stage1 cancer but treatable with surgery. Depends how many cm depth the tumor is if lymph nodes have to be tested. I was just over that’s why they tested them for precaution. My actual vulvar surgery went perfect. 

I was diagnosed May 10, 2019 with stage 1 vulvar cancer by my GYN. It was a mole like, skin tag that had a ever now in then itching sensation. My appointment with the oncology surgeon is this Thursday. Gyn mentioned surgery, so I thought I would do some research. I'm now terrified from what I found. I've seen different surgeries/procedures and now in disbelief. Im so afaid...

Hi , I’m so sorry you are in this situation. Please don’t be scared, and please stop googling! I know it’s hard but once you’ve seen your surgeon you will have a much better idea of what your surgery will involve, and it should be easier to get your head around it.

Have you got a list of questions you want to ask? I have found that keeping a notebook with all the questions and writing down the answers really helpful.

I was diagnosed with a stage 2c malignant melanoma on my vulva at the start of this year, and had half my vulva removed and skin grafted at the end of January. It’s not much fun, but you will get through it.

Hope your appointment goes well on Thursday.  Our operations might not be the same, but if you have any questions about after care etc I’ll answer them if I can

Hi

Ive just joined this group and have seen your message. I was wondering where you are up to regarding knowing what surgery you’re having?

Ive had a couple of surgeries for stage 3 vulva cancer and am finally feeling like I’m coming out the other side so I just wanted to let you know that I know how you must be feeling (when you wrote the message) and it’s perfectly understandable to be scared...I found that once things were happening and I was ‘in it’ I didnt feel as scared as I had done at the thought of it if that makes any sense?

anyway, I hope you’re doing ok 

Hello , I have been diagnosed last week with Vulva cancer by my Gp who gave me the results after googling it has spun my head around , when will I hear from the hospital and what’s the next steps . 

Many thanks x