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When is enough enough?

jewelrynut
Posts: 3
Joined: May 2004

I was diagnosed Apr 2003 with squamous cell carcinoma associated with a lesion right below my vagina, but the cancer spread to the anus. I was shocked since two doctors had told me it was just a skin tag (no biopsy), and didn't do anything. I had 3 surgeries (Apr, Jul & Aug) to remove the cancer including a 2" x 4" skin graft which has left a repulsive scar above my left knee (I was promised the skin would be harvested from my upper hip area, but guess what?). I was told that they obtained "clean margins" and wasn't given radiation or chemo - not even offered radiation or chemo - they were so confident. Now I read the excisional surgery I went through has is 95% effective, with the explanation of effectiveness being that it leaves only 5% of the cancer cells (hmmm, what good is leaving 5% of the cancer cells?) I went for my second post-surgery checkup and now the doctor wants me to get a colonoscopy (what? my anus is STILL SORE and they want to invade it?). Told him I wasn't due for a routine colonoscopy until this October when I turn 50, then found out he had requested my regular healthcare provider arrange for it, so that made me suspicious. In the meantime, I've developed itching/soreness/stinging in the area again so guess what's back, and I have the chronic fatigue I had the first time along with profuse sweating even when I'm sitting still. So, I cancelled the colonoscopy which was supposed to take place today. The gastroentrologist told me the cancer I had was a second cousin to the colon cancer that claimed my grandfater (he had a colostomy) - the good news just keeps on coming! I know what I've gone through is peanuts compared to everyone else, but I didn't want to go through the surgeries last year in the first place and only gave in under pressure from my husband. My last surgery was especially horrendus to me - had stitches removed around the anus without an anestetic, was told liquid diet then given ice chips for 5 days, was prescribed pain meds to which I was allergic and my husband didn't read the patient info before giving them to me after I got home. This probably sounds whiney to people who have been through a lot worse, but I just don't want to deal with this anymore and have told my family that, no matter what happens, I'm not going back again to be tortured being a further medical experiment when there is no 100% guarantee involved. I feel the medical system had their shot to do whatever was required last year, I fought to get over that and tried to get back to a normal life, and I didn't sign up for what's left of my lifetime with having to deal with this stuff. I'm especially upset when I read the stats are so poor as far as the survival rate (only 70-80%). My husband thinks I should go through all of this "for me", but "me" doesn't want me to have to endure all this pain again just for "a chance", and not a good chance at that. As a side note, he's always told me that if he was diagnosed with a terminal disease, he'd use the shotgun method, but there seems to be a double standard for me. He tells me so many people depend on me that it's just about a duty to endure this, but surviving to continue serving someone else just isn't a reason to me for me to keep going. I know this is the Cancer Survivors Network, but has anyone else just said that enough is enough and drawn the line?

beep
Posts: 18
Joined: Apr 2004

I'm so sorry things are going to bad for you, I really am. Please don't give up. You said so many people depend on you, does this mean you have children? Think of them, you need to be there for them, whether they are grown or young. I pray that you will find some help from a friend or a church or somewhere. The doctors don't know how big of a chance you have, and you sound way to young to give up. I am just a caregiver, and I can't imagine what you are going through. I do know about doctors not being thorough or even acting like they give a crap. There are some bad ones out there that have no business being a doctor. I hope you find some encouragement to keep fighting.
Lee Ann

snickerbelle
Posts: 3
Joined: May 2004

Hi there. I too am pondering that same question. I had the same cancer as you, had a partial radical on my right side includine lyph nodes. I was told (in june 2003) that I also had VIN-3, and I should have a follow up surgery using the lazer. Well, after taking over 5 months to heal and get back to work, I was in no hurry to oblige them. Now, I have researched extensively the problem (vin) and the treatment options. Turns out, the lazer surgery would just be a treatment, not a cure. More than likely it will come back. And I will continue to need small surgeries as time goes on to keep the problem at bay. Well, as you, I am not at all thrilled. They had thier chance, got "clear margins" and said I was cancer free. Unfortunately, they forgot to mention that the cancer was caused by the vin, the vin is caused by the hpv virus, and the virus is in my dna. So, without a dna transfer available in this century, I will have to deal with this the rest of my life. I am 35, I have three kids, and i know i have much to fight for. But, there is only so much pain, frustration, a person can take. I am trying to decide weather to treat this, or let it go, knowing that it will eventually progress...but that may take many years. In the meantime, I'd like to focus on the parts I have left and be grateful that i am no longer taking sedatives to get me through the iv's they were giving me....and no, you are not being whiney.
Free to talk anytime. Take care!

jewelrynut
Posts: 3
Joined: May 2004

Hi, Snickerbell. First off, I LOVE that name. I received a call from my oncologist. I had sent him a letter that I was cancelling my next 6 month appointment in October. He called to find out why. He said that the stinging, burning and weeping that I have been having could be due to irritation versus a cancer recurrence. I'm not so sure about that since I've got the sweating and fatigue too. At any rate, I'm going to see him on 7 Jun. He had told me that, no matter what procedure I'd ever have to go through, it would be as bad as actually dying of cancer. Don't they give mind-altering drugs to people who are dying of cancer but opt out of treatment? I was counting on that. Snickerbell, I hadn't even thought about the HPV/DNA thing - you're so right! I'm never going to have a peaceful day again without worrying about this. And, I'm getting paranoid too. I've noticed three raised brown spots that have shown up on my leg lately, which I'll have the doctor look at. I have a mental image of this stuff surfing my bloodstream looking for a new spot to invade. The paradox is that, of all the places I'd have welcomed plastic surgery (boobs, face, tummy), where I got it was the last place on my body that I wanted it. I will post the Jun 7 results when I have them.

snickerbelle
Posts: 3
Joined: May 2004

Thanks for responding. I am glad you are going to your appointment, please do keep me updated. I have cancelled several appointments recently, and actually, my gyn-onc sent me a "cover his ass" letter stating that i was supposed to have more surgery and that letting it go could potentially allow the cancer to spread or become invasive. Kinda funny considering the reason I can't go in for my appointment is that I have no insurance and to have the dr. visit, and coloscopy and biopsies it will be $600...(and they all know this is why I can't make the visit). They will send a "shame on you letter" to me, but not offer the visit at a discount. Hmmm, kinda makes you wonder...
I also would have preferred surgery elsewhere, or at least they could have made both sides of my "designer vagina" match!!

Anyway, my rant is done. I wish you the best and please write again.
Jules

epgnyc
Posts: 138
Joined: Apr 2003

Hi. I'd hardly call you whiny....you're amazing for having gone through what you have! I think vulvar cancer is one of the worst diseases I can imagine. I have a friend who was diagnosed with it one year ago and from where I'm sitting you people should all be given medals. I'm a breast cancer survivor (diagnosed in May 2002) and while I went through 3 surgeries, chemo and radiation, it was a cakewalk compared with the treatments for vulvar cancer. I occasionally check out this discussion board on behalf of my friend. All I can say is the choice of what to do is yours and yours alone. Only you can say when enough is enough and don't let others try to pressure you, guilt you out or tell you otherwise. Unless and until they have walked in your shoes, they have no idea what you've gone through and will go through. Having said that, I know these decisions are extremely difficult. I'll say some prayers for you. Ellen

jewelrynut
Posts: 3
Joined: May 2004

The oncologist said that my growths are called seborrheic keratosis, and it is a condition of old age. He wanted to just watch them until October, my next checkup with him. He changed his mind and referred me (get this) AFTER I agreed with him and told him I was sure he could tell the difference between a benign and cancerous tumor by just looking at it, since he was a cancer specialist. I said it with sincerity too - no sarcasm. He couldn't refer me fast enough after I agreed with him.

I am being referred to the dermatologist who missed my cancer the first time (oh, joy) for biopsies. I am also being referred to Vanderbilt (more joy) for an endoscopic ultrasound to check my colon and other internal tushy parts. He tells me it will be a lot easier on me than the bulkier colonoscopy - less stress to the already savaged parts. He is also having a blood test run to see if I might be suffering from hypothyroidism since I've been dragging "like a dog" since my rear end started stinging again. The growths themselves don't really worry me. BUT, the growths along with the stinging returning and the fatigue are all the same symptoms I had the last time I had the cancer. And I've been through being eyeballed by doctors who said something was benign that ended up not only cancerous, but spread. If these guys could eyeball and be right, we wouldn't need pathologists.

After I got home, I found there are cases of seborrheic keratosis being simulated by actual cancer (see
http://dermatology.cdlib.org/DOJvol3num1/melseb/melseb.html), and the recommendation is to "get a biopsy".

Mariefost's picture
Mariefost
Posts: 10
Joined: Jan 2004

Hi, I'm Marie,42 and have dealt with vulvar cancer myself for the past 5 yrs. My last surgery was a skinning vulvetomy with removal of my anus and reconstrustion taken from my thigh..(there went my playmate of the year award hu) Anyway I know how tough this gets, I'm going thur a recurrance myself now and it sucks. Have you thought of joining an online email support group? Theres one here if you'd like to join in with plenty of Vc gals.http://health.groups.yahoo.com/group/WomenConqueringCancer/

angdenise
Posts: 1
Joined: Mar 2006

My dermatologist diagnosed me with skin cancer on my lower leg. However the biopsy came back with seborrheic keratosis (SK). That sounds great however my lesion went thru some odd changes that don't sound like SK. This lesion on my ankle was a raised oval skin colored bump (about 1/4 inch) and was there for over 1 year before it started changing. Then one day it formed a crusted circle which was suddenly about the size of a dime. The circle was various colors of mostly red and pink swirls...very strange. Not long after that it changed again, it became more flat or flush to the skin, some crust still there but mostly gone. You could still see a faint outline of the circle and the bump but it was now sort of a brown grayish color. My dianosed skin cancer history is actinic keratosis, my mother has had squamous cell carcinoma (on her ankle) and last but not least my Grandfather's (mom's dad) half-brother died of melanoma. Any comments about the changing lesion that was diagnosed seborrheic keratosis are appreciated. I'm thinking about having a 2nd biopsy but think I'll discuss it with the dermatologist first. Am I over-reacting or is this normal for SK?

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