I posted about my squamous cell carcinoma on my chin a number of months ago. I’d like to update what happened because I think it would be of interest to many people.
At the end of August, I had a Mohs procedure done that seemed at the time to remove everything, leave a nice Small scar, and I thought I was done with it. Boy was I ever wrong!
it turns out the tumor grew back. Even though it is said that these procedures are 99% effective, I apparently am in the 1% that it has failed. I knew about six weeks ago that something was wrong, and that something was either inflamed or growing back. It has since grown back larger than the original, and it took me that long to wend my way through the maze of doctors to get to a proposed fix.
It has taken six weeks to go back through the dermatologist, get another biopsy, get referred back to the Mohs surgeon, and finally I have been sent to a head and neck cancer surgeon. I saw him just at the beginning of this week. Being on my chin does not leave much skin real estate to work with and this makes the procedure that much more difficult now.
I gather when I’m Mohs procedure fails, The next step is for an open excision with much wider margins.. ironically, the original Mohs Surgery slides were re-examined, and no one can find any evidence of any piece of a tumor that was left behind. So now everything is being blamed on my CLL status. I don’t think that’s true, but nobody really wants to hear what I have to say.
What I’ve been told is that since they must take a larger piece of tumor out of my chin and probably pieces of muscle, etc. that I will likely lose motor function in my lower lip – perhaps substantially. This may make it difficult to eat, talk , and even be anything but a side-show at social gatherings.
I have been proposed two surgeries. The lesser one will take four hours in the operating room and involve removing a good piece of my chin and somehow reconstructing things so that I look or resemble a human being. I am told that even my speech will be affected by the loss of muscle and nerve tissue in my chin. Since I am dealing with surgeons, my suggestion should I be put on a tumor inhibitor while I am waiting was immediately dismissed.
I have been proposed a second procedure which involves removing tissue from my leg and grafting it onto my chin to try to restore some motor function etc. This procedure will supposedly take several hours in the operating room and require a five day stay in the hospital to see if the graft has taken. I didn’t get to ask what they would do if the graft didn’t take, but I assume it means going into my chin again. Medicine has become so chaotic these days that I got 10 to 15 minutes to even discuss all of this with the surgeon.
Even worse is the fact that the surgeon has told me it will be 3 to 5 weeks until he can get the operating room at UCSF (San Francisco) Long enough to do this procedure — and possibly seven or more weeks if I do the more extensive procedure. All the while the tumor is growing in my chin and actually hurts and it’s quite uncomfortable simply from the pressure it is exerting. The larger the tumor grows while waiting, the more tissue must be removed. The surgeons act like the could care less about this problem.
I am a bit skeptical of the more complex procedure simply because it seems quite complicated and quite prone to failure. It also seems like begging for infection! Both procedures involve a head and neck surgeon, and also reconstructive surgeon both working on me for many hours. I will admit that I am more than a little annoyed that I have to wait so long during the holiday season to get what is an urgent surgery performed. The longer I wait, the larger, the tumor grows in the more complex and extensive any surgery will be.
I have been trying to find another surgeon to take on this case in the hopes that they would be able to do it sooner. So far, no other surgeon will touch the procedure. Apparently, the attitude is “whoever broke it gets to fix it.” My CLL doctor at Stanford has expressed concern that any long open procedure is subject to infection, which would be all the more problematic in a CLL patient. Either way, the outcome is going to be somewhat deforming and not a pretty sight.
Whether CLL is the cause or not is not ever really going to be known. What I can say to people is that they need to be very very attentive to anything growing on them after a CLL diagnosis. Skin cancer can be serious business! At this point what they want to do to my chin and face is far more life shattering than what I have experienced with CLL at this point. I have gone from a relatively minor skin procedure to what is now considered a major one. 😩😩
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Jonquiljo
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I'm so sorry. I've had two Mohs procedures and last week had a growth taken for biopsy but haven't gotten it back yet. What do they do now? A deeper Mohs surgery ?
Sorry. I accidentally terminated my original post, so I edited it to complete it. I’ve described all of the crazy procedures that they now propose. Thanks very much for your concern. I know you’re going through a lot more than this and I appreciate your concern.
This IS a lot and sounds like the cure is a rough road. I have no advice just support through positive healing thoughts sent to you. Sounds like you got a second opinion already? I am going to research nerve regeneration as I seem to remember some nerves take a year to grow an inch. Not spinal nerves peripheral nerves. I'm also thinking a small beard could disguise much. Okay Houston Methodist facial surgeon Michael Klubec has a new procedure where even transplanted muscle from the thigh onto the face can be innervation through PEG procedure, very innteresting.
Sorry to hear of your very difficult circumstances. I hope that you can achieve a much better outcome.
Thank you for sharing this, so that we are all aware of the importance of regular skin checks when we have CLL, followed by prompt attention to any recommended surgery. You've regularly shared your challenges regarding having adequate medical oversight where you live. I'm sorry your concerns have been validated.
Hopefully this may work out. Its always a problem of getting the medical community to cooperate here. I guess I live in an area with few providers relative to the population size. I can be pretty aggressive in getting heard, but it doesn’t seem to open doors.
I hope for everyones sake this situation eventually improves. Then again, the holiday season doesn’t help things!
A question I’d ask: is it possible to pursue the less complex surgery first and then perhaps pursue the second surgery at a latter date if you find it necessary? This approach, if possible, would achieve two things:
1) You would get into the operating room quicker and lessen the chance of the cancer spreading;
2) You’d get an opportunity to see how your speech and chewing were prior to committing to the more extensive surgery.
Thats just it. The “lesser” procedure is a minimum of 3 weeks and more likely 4-5. The complex procedure is at least 3 or 4 more weeks. This this is currently contained (or so they say), but will not be much longer.
The crazy thing is that the surgeons simply state this as fact - ignore me when I tell them we have a “clock ticking”. The fact is that they don't give a damn.
They can always blame this on the Mohs surgeon and the Mohs surgeon has called me a number of times about it.
I’ll give them all a couple of days next week to come up with something reasonable and I will be forced to turn this into a legal circus. That’s the last thing any of them want — and frankly if this spreads too much, it could possibly kill me. Disfigurement is a given.
At that point, what have I got to lose? You can bet that if I were a 30 year old they’d be right on it. Because I am 70+, I really think they could care less. That is American medicine in a nutshell.
What they aren’t counting on is that I will fight back. This is all private medicine - and therefore it puts the medical players in a position to answer for themselves.
I understand your frustration with the US medical system. Review my historical posts and you will see I received bad advice in the early innings of my CLL diagnosis so I can empathize with your position. However, taking a combative approach is likely to be counterproductive. And as you note, it’s impossible to know if the surgeon made an error or you simply had bad luck. In either case it doesn’t matter as you can’t change what happened yesterday. The medical establishment is overworked and underpaid and medicine isn’t a precise science. Be persistent but reasonable. If you “turn this into a legal circus” you likely will be the only one who loses.
HopeME, if the original slides didn't show any cancer, then any that was there was microscopic, it wasn't surgeon error that resulted in it growing back. One can only detect the cancer when it grows/misshapes the cells enough to be seen.
I remember one cancer patient who complained about "something" that was painful/bothersome, in her thigh. Tests were run, nothing was found. It took about a year before "whatever" grew enough to be detectable.
Perhaps a takeaway for us CLL'ers is if we have to have a Mohs, perhaps ask if a bit more than the usual region be excised. We know our immunity is impaired, and may not fight off "borderline" cells that appear normal but are actually the outside region of a skin cancer.
I guess this is no consolation and I am so sorry to hear this. I had a SCC on my shin (luckily not on my chin) and it took so long to get a referral to a specialist in our antiquated NZ system that it was huge and actually not very pleasant in appearance or smell. No such thing as Mohs offered in NZ (well there would be if I could have paid which I was actually prepared to do) but even then I couldn’t access it., Fortunately I found a surgeon who was willing to cut it out- I now have a huge ‘shark bite’ on my shin.
I think it’s all very well to tell us to stay out of the sun but actually I reckon the damage was done a long time ago. My SCC appeared very soon after I had had a skin check and it never showed up on it.
Good luck on whatever you decide to do. We didn’t know when we were younger that we were going to be skin cancer victims or that we were going to get CLL.
My husband had the same surgery for the same type of skin cancer on his forehead three weeks ago. We will now start to watch the healing result more closely and be praying for you as well.
In my case it was clear within 3-4 weeks post surgery. Mohs is 99% effective. Someone did something wrong, or I am one of the unlucky 1%. My regards to your husband and I hope it will not be a problem.
Sending support and strength to you as you navigate this serious medical procedure(s). My heart is with you and praying for a path to open up to expedite this for you.
I’m so sorry to hear all this and very concerned for you. The long wait is so stressful but I am sure that the surgeons will do the very best work for you. Maybe they are spelling out the worst scenario just so that you are aware of what might be the outcome. I will be thinking of you.
My partner was given antibiotics for a growth on his leg which wasted precious time and he ended up having a deep scar. When he first went to the GP the growth was the size of a pinhead and could have been easily removed. He has now been referred for a growth on his forehead. This time things are moving more swiftly. More education for doctors is imperative.
I have had a diagnosis of CLL for 10 years and am currently on Calquence. I have had more than 15 BCCs treated or excised over the past 20 years (I am 80 year old male). For the past year, I had a type of SCC on my temple, which did not respond too 5-fluorouracil. Mohs surgery was considered, but the area was considered too large, and underlying striated muscle was involved. So I have recently finished a course of 20 doses of electron-beam irradiation as an alternative, Not a pleasant procedure, and it, typically, looked worse a week after the sessions, but it now seems to be healing, and certainly "looks" better than before the start. Only time will tell if it was successful.
My underlying muscle is NOW involved. But they seem to want to take only a surgical apptoach. I’d expect an oncologist would be called in at this time. There are inhibitors that can shrink or remove SCC. No one wants to consider them.
The underlying problem is that I get about a 15 min surgical consult for all of this, and they are acting like robots having devised their “plan” before even seeing me.
They know the bottom of the tumor is on my jawbone, but still don’t see this as a Red flag.
There are alternative to surgery. I've gone through the same traumatic processes as you (including the holiday delays). I was diagnosed with CLL in late 2019. Two years later I was also diagnosed with SCC on my scalp which turned out to be 'aggressive.' Mohs was followed by referral to Head and Neck and some very extensive surgery and skin graft but the tumours continued. At this point I was offered a two-year immunotherapy treatment, cemiplimab. The tumours visibly shrank and disappeared over a short period. In May I completed the cycle of treatment which consisted of an infusion every three weeks and I am still clear of SCC. How long this lasts remains to be seen but the point is that there are alternatives to surgery. In a recent conversation with my skin oncologist he told me that his team (at a London teaching hospital) is also now offering local injections of cemiplimab.
The link between CLL and skin cancer is serious and I don’t think that much of the medical profession (outside of CLL specialists) realise the true danger. We also need to keep the subject before the attention of this community. Every CLLer needs six monthly dermatology check ups.
If I can be of further help please contact me privately.
Your case is similar to mine. I wish they would offer an interdisciplinary approach like they are doing with you. Why this won’t go beyond “head and neck surgery” is beyond me. Also, the area they want to open and remove just invites an infection. With CLL that is dangerous. But no one seems to care.
UCSF has a fairly decent CLL staff in San Francisco (i am monitored by Stanford, however). You think they would all form a plan. But no, its head and neck surgery or nothing. Pretty short sighted I say.
Is there a dermatology oncologist involved that could suggest cemiplimab as Amiable_Andrew suggested, or even another therapy instead of waiting on surgeons?
So sorry to hear about your challenges, sounds scary. I really hope you get someone to operate or deal with it very quickly. It angers me to hear you feel like they don't care, sad and unacceptable. I'm sending you a hug and pray for the best possible outcome.
I just re-read your updated post!! I understand, quite well, what you are going through with doctors, surgeons etc , even within the scope of their specialty. 😡. And you are correct - 15 minute appts are useless as doctors don't seem to be listening within their specialty scope so when it goes outside they are totally useless and you have to take control unfortunately.
Just wondering how your CLL is "staged", or if you are having issues with it ? Have you checked your wbc labs in past few days? Have they gone up? I have found with me that three times when my wbc suddenly went up it was because of infection, not cancer related, and when the infection was cleared the wbc went back to normal(or whatever it had been prior) what is the possibility that this is actually "another" cancer located in the same area and was not something left behind of what you were told were clear margins? Has anything been biopsied ?? I was advised that I had a small mole on my butt. I knew I never had anything there before and asked a friend to take a picture and when I enlarged it I could see it had highly irregular edges, a usual sign a mole is cancerous or pre cancerous. I made appt with dermatologist who said the same thing to me and ended up excising the whole thing. (It was small and "shallow" which is always a good thing - my thing is always try to catch it early!!) one of my hematologists took a cursory look at it before taken out and said it was nothing! Hopefully it will turn out to be nothing but now having CLL, AML, TPLL if it don't look right it's coming out!!!!! Awaiting results.
Unfortunately cancer doctors also have their own specialties and sub specialties and if it doesn't concern them they are not interested or knowledgeable in doing a procedure. However.. they should send you to a doctor who is experienced in the particular type, stop pointing fingers at who's fault it was, and get the issue taken care of😡😳 sooner rather then later. As far as scarring goes - that's part of any surgery and believe me I know all about multiple surgeries and what they do and what they leave behind. That should be the least of your worries. However the bone involvement and possibility of eating etc issues is real and very important. That why you need to do due diligence in researching a specialist yourself. And to that I say "Welcome to the club." And not in a mean way but in the way of one who has been there countless times and currently in my own situation 😔. However through perseverance and luck I hope to resolve my issue (hahahaha) and wish you luck resolving yours. As you know, time is of the essence. I wish you luck in finding an experienced surgeon and that, one way or another, it will resolve. Sending love, luck and prayers
There is a principle in cancer surgery to DE-BULK the mass as much as possible without damaging the muscle and nerve then treating with radiation or chemo or MAB
So sorry for what you are going through. I just had Moh's surgery for a basal cell on the side of my nose on November 6. The surgeon had to go in 3 times to get clear margins. It was also quite deep. I had to have a skin graft which I didn't expect. As you know those of us with CLL have an eight times higher chance of getting a skin cancer. I am keeping my fingers crossed that everything was removed. And I am keeping my fingers crossed for you for your next procedure to conquer your squamous cell. Pat
I just had my 4th MOHs . All in different places, but I would investigate it more if I need more. It may still be controversial as Gentle Cure touts effectiveness equal to MOHs , but my dermatologist (who specializes in MOHs says it’s not proven yet to be as effective … I don’t really know if that is true or a conflict of interest), but as a patient, I’d check it out, particularly in your situation!
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