| T O P I C R E V I E W |
| Sue |
Posted - 10/06/2009 : 17:36:59
2 weeks ago I had MOHS done on a dime sized BCC on the lip area just below my nose, which left a deep hole. The next day they did a full skin graft from an area in front of my ear(which left a 3 inch suture).
The graft is not taking, except a very tiny corner, so far. I don't know if they will try again or just let it heal with a scar. I hate to go through another skin graft.
The donar site has been very painful, still aches and I have weird trickling sensation all the time from nerve damage, which I assume will fade with time, I asked the doc about it and he said nothing.
There was a lot of pain from both sites for several days, and even with tylenol and codene (which I had to ask for), I used a lot of ice packs, mostly on the skin donar site.
I am very dissapointed. I had two docs two years before this tell me it was nothing and refuse to do a biopsy, and then one tell me not to come back for at least a year and only if I had something serious. I have a family history of skin cancer with 5 members having BCC and 2 malignant melanoma.
Can I tell you the name of this hospital without being sued? Oh I'll just counter sue if they do, it is Kaiser. I am changing my health plan this week. And the next BCC will be treated at home with something natural. |
| 9 L A T E S T R E P L I E S (Newest First) |
| RidgebackDogs |
Posted - 10/19/2009 : 22:28:52
Sue Hi!
Sorry this has been such a complex and frustrating experience.
It's so aggravating to have to deal with drs. Sometimes the more drs i consult the less i end up knowing. If i get more than one opinion then what to do???
It's maddening when one goes to get information and comes away without it or wondering if they know what they're talking about!!!! been there, done that too.
With my surgeries (i have not had a donor site only mohs and one with flap grafting) the area has had some kind of pain, altho not continuous, while the healing process was going on - usually after the stitches come out. i have not needed painkillers for any of them - not even tylenol. The only one that i had any pain in before skin was healed on outside was the flap grafting when it bled when it shouldn't have - this was from chewing which they didn't tell me to avoid (the flap graft was nose tip). i did call when it bled and they told me what to do - they had given me a sheet of what to do and when to call. The areas were sore if manipulated (too vigorous applying moisturizer for instance) for about 8-10 months. I would sometimes get shooting type pains, other times a burning sensation or sometimes tingling. Most of my nose is rather numb - normal sensation has not returned after 3 yrs with one and 1 yr plus with the flap-grafted site.
You sound like you are a pretty healthy and energetic person as all the things you did after the surgery amaze me! i am always more whacked out after a Mohs session than i think i will be. Usually i do not do too much of anything for the rest of the day nor the next few. Of course with facial surgery bending forward, lifting, as well as excercise or activity that will raise your blood pressure is a no-no usually until the stitches come out.
As far as whether to wait for the repair of the failed graft perhaps you might call like U of Michigan (they do alot of Mohs) or perhaps another U and see if there is someone there you could question or email about whether or not to wait. Sometimes drs give opinions based on what has "worked" for them in the past and their opinions are often differing. Sometimes there are 2 schools of thought (or more) on how to deal with a particular problem medically or what works best in a given situation. Perhaps you could ask the drs what they based their opinion on when to do the repair.
Please know you are in our thoughts and prayers on this forum.
Skin cancer is a bummer! |
| Sue |
Posted - 10/19/2009 : 16:46:24
The doc called me this in morning. He burned off the top with silver nitrate because it was building up too high. He said it would be black for a long time and not to let the sun hit it or it would be black permanently. Geez how nice.
Last night I taped my top lip down to my chin till I could feel the scar stretch ( I read that scars are taped to prevent stretching why not tape to stretch it?) and my lips were even this morning, but it is gradually going back up during the day. The doc said it was ok to do it and keep doing it. He said it was likely to get much worse until it is healed enough that I can massage it.
He won't do the injections in the skin donar scars. Said to give it more time. The other doc said it shouldn't be hurting this long, one month now. Who do I believe?
I am thinking of going to the nonplan doc for skin fold surgery to get it done right if it is not too late. $2000.
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| Sue |
Posted - 10/19/2009 : 00:48:10
The Nightmare continues...
Well I could not make up my mind what to do. I called the Mohs surgeon to see what she thought. She agreed with the last doc to wait one year and fix a possible bad scar, her collegues agreed, she said.
Then I talked to the nonplan doc who said, fixing a bad scar is much harder than fixing it correctly now. He was surprised that the doc made that decision.
Meanwhile inspite of changing the saline dressing 3-4 times a day it began to stink from clinging debris, and had a deep pit.
I then researched the Biafine cream the nonplan doc prescribed, that my health plan doc said not to use. It is new to the US FDA approved in 2006 but used in france for 25 years. It rehydrates, enables debridement, and increases macrophages to the area to increase healing. So I slathered it on thick.
In a couple days the smell was gone, the wound was flush with the skin and the dead tissue was gone. On friday the doc was so impressed at how great it looked he decided not to consider skin flap surgery for sure.
That was friday. Sunday morning I looked in the mirror and was shocked at my lip. The wound has already begun contracting like the nonplan doc said it would. Wow do I look weird, not what I thought it would look like. The peak of the colored part is much higher than the other peak, and the rest of that side of my lip looks much wider, like I have a fat lip, It looks awful.
In addition to that surprise, the suture by my ear (graft donor site) is hurting more and the earlobe is very tender and sore. Its been a month, should not feel like this still. The nonplan doc said steroid injections would reduce inflamation and prevent keloiding. The keloiding is causeing the pain. My health plan would not consider the injections so I will have pay out of my pocket to have it done with the nonplan doc. I have no hesitation to spend the several hundred dollars for this, I am miserable with the constant aching. |
| Rose Petal |
Posted - 10/18/2009 : 02:12:21
Sue:
Thank you very much for adding more details. It helps in understanding your current situation better.
I am very sorry to read about your suffering. Skin cancer can be one of the most frightening situations.
You appear to be making progress in finding a better doctor.
I really don’t care for the idea of surgery. I won’t go into all of the reasons why but if there is any other VALID way out, believe me, I’LL TAKE IT!
When my sister and I consulted with the plastic surgeon, a staff member came in shortly before the doctor did and offered a look at a book with before and after photos. Since I am fully aware no doctor is going to print his horror pictures, I declined to look at them.
I am extremely excited regarding my healing with PERRINS BLEND. I will be honest, however, I kept the cream on my nose WITHOUT a bandage for SEVERAL (9+) hours at a time. My lesion was deep and I knew time was of the essence; but I am STILL amazed at the results.
I also took Judy Perrin’s advice and began taking 250 mg of Grapeseed Extract in April.
http://estore.websitepros.com/1189702/Detail.bok?no=22
I bought my bottle at Natural Grocers, however, since I live close by and they are $5 cheaper than Judy Perrin. She has a great price though. Natural Grocers is only located in 3 states. Btw, WHOLE FOODS does NOT have 250 mg of Grapeseed Extract and they are MUCH higher priced.
http://www.naturalgrocers.com/grape_seed_mega_potency_by_now_90_ct_item_165549-p-4791.html
Please keep us updated on what you decide.
God bless you.
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| Sue |
Posted - 10/11/2009 : 16:35:24
Forgot one more thing, about the skin graft donor site, which after 2 weeks was still sore and painfull with knotty lumps. The first nonkaiser Dr I saw out of my pocket gave me a prescription for Biafine which I got for $50 at costco. I am massaging that into the area several times a day. It is not a pleasant procedure but it is breaking up the lumps and the pain has lessened. |
| Sue |
Posted - 10/11/2009 : 16:15:32
In an effort to keep the story short I left out a lot of details, so I will recap.
In summer of 2007 I saw a dr for a spot 1/8 inch wide under my nose I was observing for a year, scab that did not heal, crusting and oozing. This Dr did indeed say it was NOTHNG and said that i was coming in too often (it had been once a yr) and not to come back unless I had someting serious. No biopsy. No picture.
It grew to almost 1/4 inch, so I came back the following year(2008), and saw a different Dr. She looked at her computer, turned to me and said the exact words "it is nothing". She did burn it off with liquid nitrogen (That burn was excruciating for hours). No biopsy. No picture.
It grew back a few months later so I took it off with "Wart Mole Vanish", a plant extract that works great on moles, warts, and skin tags by the way.
It grew back about 6 months later (now we are in early 2009). I ignored it, I had other problems at the time that were overwhelming. It was growing rapidly and getting lumpy and it had creeping crawling feelings in it and lots of tiny blood vessels. It was crater shaped, the original scab in the center still bled and oozed, the edges were creeping up onto the rim of my nostril, it was over 1/4 inch wide now.
This summer of 2009 I told my my gynecologist to quit nagging me about mammograms get someone to take me serious about my lip. He was horrified by my story and made my THIRD appt with a dermatologist. THIS one finially took a biopsy and the result was nodular BCC. So it took TWO years and 3 Drs to get a biopsy! There's an HMO for you!
The surgery was scheduled for 2 months later in sept (geez so it could grow another inch!?). But really they grow 1/8 inch a year, so I was told by a Dr, I think they they have growth spurts and I was in one. I was told (by a nonplan dr) that freezing it would slow its growth so I did it myself with "Wart Mole Vanish", again, then put perrins blend on it. It healed well, the ridges and scab were gone but it still itched so I knew it remained in the deeper layers. I was hoping I could cancel the surgery. I didn't discover the other remedies until recently and didn't trust them fully.
I did not tell the mohs surgeon about what i did to it. She made no comments that it looked different (my friends noticed) but she did not cut the same width of area that she originaly described, the rim of my nostril was left intact and part of the lip ridge. I think I may have saved some of myself.
Now for the latest:
I saw three cosmetic surgeons this week after the graft failed.
1st doc (out of my plan and pocket) - he rec'd skin fold graft, one fold from each side, easy, good results, but he could not do it and refered me to another surgeon.
2nd doc (out of my plan and pocket) - he rec'd skin fold, one flap from cheek side, done with a local for $2k. But he told me how to deal with kaiser and told me who was the best cosmetic surgeon in their system, who also could have done the Mohs and repair in one session. Wish I had known about him in the first place but no one at Kaiser was volunteering any information.
So I went to file a complaint at kaiser and ask for a referal to the 3rd Dr. Within an hour I had a call from the new center and they would see me that afternoon. wow.
3rd doc (in my plan) - he had a book of pictures of all his patients before and after of all the techniques. He had a third idea, skin flap rather than skin fold. There was only one example in his book in a location as mine and the result caused a crooked mouth line.
I said a permanent half smile is better than an elvis sneer.
But he rec'd leaving it alone over doing the surgery. Everyone heals and scars differently. If the skin flap fails or scars too much ive burned all my bridges. After a year of healing naturally, he would fix the scar if it was too bad.
He did not have a pic of an area like mine healing naturally, but I was told by another dr the area would shrink and my lip would pull up and it would not be easily fixed then. The pics that did heal without skin grafts were mostly on the nose, some looked fine afterwards and some had obvious scarring and a deep divit. I have thick skin and tend to scar excessivly. Maybe my excessive scarring would fill in a divit.
None of the three rec'd another full thickness graft like the original dr wanted to do. Failure rate is 12-20%. Mine should have taken but I was given instructions keep clean and dry only. The third doctor says he tells his patients with skin grafts not even to talk and be careful with eating, no lifting over 5 lbs, etc. I had no idea they were so sensitive, I talked, ate, brushed, flossed, washed two 40lb dogs (they stunk!), vacumed, did yard work, all in the first week. Now with two wounds and back to square one, what a terrible thing to go through just for lack of information. I would have gone without brushing my teeth for a week if thats what it would have taken to heal properly.
So the decision is up to me and I have a couple days to decide due to the dr's schedule. I don't know what to do actually, I'm confused with all the opinions.
I broke out in hives at that appointment. I guess it is the stress.
This last clinic is treating me well, gave me direct phone numbers, offered sleeping pills (how about some valium?).
Well I hope this story has been helpfull to someone. For future BCCs which with my family history I know I am in store for, I will try these other remedies when they are small. |
| Rose Petal |
Posted - 10/09/2009 : 00:05:29
Sue:
If the doctor never did a biopsy, how are you sure you have BCC?
Your BCC seems to have advanced faster than the norm. This may be the reason a couple of physicians "blew you off." Every doctor I have seen is ADAMANT on a biopsy. I would have loved if one had given me more time to think. They wanted to RUSH me to surgery IMMEDIATELY!!!!
It is unfortunate PERRINS BLEND did not heal your wound. It began working for me within FOUR hours! After a few applications, though, I found it to be more effective WITHOUT using a bandaid.
I am now putting Woolite on some of my night garments to get the PERRINS BLEND stain out.
Just for the record, the plastic surgeon I consulted with said he hated to do skin grafts because he said "Quite frankly, THEY LOOK LIKE CRAP!" I admired his straightforwardness.
I phoned DAYSTAR (1-800-329-0029) tonight and had prayer about your cancer and discouragement. I understand that this situation can get gloomy.
Please keep us updated on your progress.
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| Sue |
Posted - 10/07/2009 : 02:09:14
Rose,
Had my 2nd follow up today and the whole graft was necrosed and had to be removed. The dr wants to take a second graft next week from in front of my other ear. I still have pain from the first donar site, I hate to be mutilated again, and possibly lose the skin a second time. If I do not have a new graft the healing will leave a bad scar and pull my lip up on one side.
I tried Perrins Blend for 2 months before the surgury and there was little response. The scab that had not healed for 2 years did finially heal and the surfaace looked better, but the itching continued and the cancer cells found with mohs were very deep. So deep that after it was cut out I lost sensation inside my right nostril and the rim. I think Perrins might work when the spots are small and not deep.
Kaiser is a california hospital system. I am changing plans because of the two dermatologists that blew me off when the BCC was small. I have had other bad experiences there as well, but my gynecologist is really great, he got me to see the third derm when i had given up. I hate to lose him but skin cancer will be my main problem from now on if i am anything like my mom. I am going back to the plan where I will deal with copays and deductables and billing nightmares but had a good dermatologist before and will go back to him.
Meanwhile I am going to see a new cosmetic surgen to get a 2nd opinion and maybe pay out of my pocket to have someone outside my plan do it. I will put it on my credit card if I have to.
I will come back here and report what the 2nd opinion is. |
| Rose Petal |
Posted - 10/06/2009 : 19:54:50
Sue:
I am extremely saddened to hear your "horror story." This is one of the reasons that I did not want Mohs surgery. Throughout my research, I discovered many unhappy post-Mohs campers out there.
Just curious:
Where is Kaiser Hospital located?
Why are you changing your health plan?
I bought a 100% natural product (PERRINS BLEND) and it healed me from a SCC on my nasal tip that had already gotten into the dermis! I give God all the glory. Also, a big cyber-hug to Judy Perrin who invented it.
If your doctor or doctor's staff is not pleasing to you, I would certainly keep trying till you get one you like.
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