Presumably this is a secondary tumor from my CLL. The problem that I am experiencing is that the tumor has been left to grow for quite some time. The last time I spoke with Dr Fakhri at Stanford was 5 months ago, and she was happy that my CLL has been so stable.
I noticed something growing in my chin last summer but I was still so depressed after the death of my wife that I did not deal with it right away. It then took almost 3 months to get an appointment to see a dermatologist. The dermatologist that I did see in December took a very quick shave biopsy and had it analyzed. This was late December 2023. ironically, I go to concierge practice for my primary care and they send me to a dermatologist who is not even board-certified!
I got a message from the dermatologist’s office back then telling me that the “cyst” was nothing, and it was simply a benign growth. Pathology indicated that it was likely benign as well, though the report went out of its way to cover it’s butt — indicating that there always could be exceptions. Even though I asked for it, I never got a copy of the pathology report. My primary doctor got a copy of the pathology report, but never looked at it apparently. even with electronic medical records, the report was never made available to me. Had I seen it — I would’ve read between the lines, and realized that this was not a thorough job.
The “cyst“ kept on growing and I found no one willing to help me, even my primary Dr (who likely never even read the report). So I got angry, found a competent 2nd dermatologist, and had a punch biopsy done. I heard today from the doctor that it was definitely squamous cell carcinoma and a very large one at that.
Given that it has been easily a year growing and not being dealt with, and because of my immunocompromised status, my dermatologist is trying to get me into the UCSF mohs unit on a priority basis. She told me today that it was large, likely mostly beneath the skin, and approximately 2cm squared. she said quite frankly that anyone with any lesion who had CLL should be thoroughly checked out. Of course no one paid attention to my problem.
My “new” dermatologist was quite frank and told me that there was a chance that it may have spread. She said that we would have to deal with that after the lesion was excised. Given that it is Friday they were only and able to send the request to UCSF mohs clinic late today.. She seemed quite concerned that it had been able to grow for so long (probably 1 1/2 years), and also that the first dermatologist had gotten a completely different biopsy report than she did. She said, “I don’t know what that dermatologist even submitted for a biopsy!“
I know these things are fairly routine for CLL patients, but frankly, I am very concerned because it has been growing for so very very long. I’ve done the usual things like contact my CLL specialist at Stanford, etc.. — but medicine these days is so screwed up that I do not expect things to go very smoothly.
I finally am coming out of the depression from losing my wife two years ago – and now I am dealing with this! Anybody have any information or words of encouragement? Of course I now live here alone with my two wonderful dogs. I have no family or friends to help. Luckily, I can at least afford to hire anyone I need to help. But my concern is for the dogs, of course! They got upset today, simply listening to me yelling at my primary doctor over the phone for being so incompetent. Thanks. Jon.
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Jon, I'm so sorry to hear about the delay in identifying the "cyst" on your chin. I had a similar situation a few months ago. At a dermatology checkup last October, I was told that a spot on the tip of my nose was a blocked pore. At my 6mo checkup in April, the dermatologist ignored that "blocked pore" and did some freezing on other spots. When she finished, she asked if there was anything else that I wanted her to check, and I pointed to the spot on my nose. She said "Do you want me to biopsy it?" I said "Yes please." The biopsy report came back as a basal cell carcinoma, and I insisted on Mohs surgery instead of fluorouricil. During the Mohs surgery a much larger squamous cell carcinoma was discovered in the underlying tissue extending to the muscle tissue in my nose. (I didn't know that noses had muscles!) The repair process required 65 stitches extending from the middle of my forehead to the tip of my nose, and down one side. During the procedure the surgeon checked for enlarged lymph nodes around my neck. Time will tell if all of the tumor tissue was removed.
Prior to the scheduled surgery I sent several journal articles to the Mohs surgeon to warn her that being able to identify "clear margins" might be difficult in a CLL patient. I've attached links to two of the articles.
Lymphocytic Infiltrates and Subclinical Epithelial Tumor Extension in Patients With Chronic Leukemia and Solid-Organ Transplantation
Dermatologic Surgery 29(2) 129-134, February 2003.
Gardening girl: I am so very sorry to hear of problems you’ve had yourself. It sounds like you went through a very difficult procedure. I’m glad you got the proper care and hopefully they have removed all of the cancerous tissue. Had you not insisted for Mohs surgery, you would not have had the chance for complete removal of of the cancerous tissue.
My situation is indeed very similar to yours in a lot of ways. And thank you very much for your reply. When you have certain problems, it’s almost necessary to become your own advocate and demand a certain level of care. It appears you have done that!
Next week hopefully I will be able to be in touch with Dr. Bita Fakhri as well as the surgery group at UCSF that my dermatologist is sending me to. What I have noticed as I start to get into my 70s is that physicians will not take you seriously no matter what you do or say. I frankly think it’s a form of elder abuse. I really do. Well, they have gotten me angry. — and when I get angry, I get aggressive.
One problem that I did not mention earlier is that I have small white growths on my tonsil area. I have seen four doctors on different occasions to get an opinion as to what is going on there. Two of the doctors are ENT surgeons. I got silly “It’s nothing“ answers from three of the four. The last ENT surgeon said I have “tonsillar cysts”. He insisted that they were minor, and that I should feel no discomfort from them. That has not been true. I have a very irritated throat most of the time. Had this squamous cell carcinoma issue not arisen, I had scheduled a fifth consult with yet another ENT surgeon. These “cysts” are not comfortable despite what they keep telling me. I can live with the discomfort, but this raises red flags to me. I think that tonsillar cysts is just a quick and dirty diagnosis to get me out the door. I have lived with those for 9 months now, and they are slowly getting worse. With a compromised immune system, anything may be possible.
I’ve never been an expert about human anatomy, but have serious concerns about these tonsillar cysts. I also wonder if they could be related to the mass on my chin. If you think about it, there’s not much distance between your chin and your tonsil area. Of course in modern medicine. No one bothers touching people anymore and I do not know if I have any swollen lymph nodes in any area in my neck. I know this is all unscientific, but I have a gut feeling that there could be a relationship between the mass on my chin and my “tonsillar cysts.”
Even get a Dr. to address my concern will take a major miracle! No Dr. Will ever look at this problem in any other way but piece by piece. The dermatologists will not talk to the ENT’s. And no one will listen to me. No one wants to potentially connect the dots. I suspect the thinking is that I am over 70 and not worth their bother. In a strange parallel, this is what happened to my wife in part. So I have seen this before many times.
As CLL patients we have to be our own advocates. But acting as our own advocates doesn’t assure us of anything. Pretty pathetic, huh?
Jon, thanks for your response to my comments. About your " cysts", it seems like a good idea to get them biopsied! When I was searching ASCO abstracts last May for ones related to CLL, I happened upon this one:
Beyond margins: TIME-infused insights into recurrence in surgically treated oral squamous cell carcinoma (OSCC).
I was interested in it because I had upcoming Mohs surgery scheduled for my nose. I contacted the first author and asked how likely it was that the TIME technique could be used outside of a research setting. As part of our discussion I read a bit more about oral SCC. The article below stated the following:
"Physical examination of the oropharynx may reveal either an ulcer or a red or white patch on the base or posterior one-third of the tongue, posterior and lateral pharyngeal walls, soft palate, or tonsils." (my emphasis)
Endoscopy and Laryngoscopy
Endoscopy and laryngoscopy are performed after using an anesthetic spray or general anesthesia to visualize and examine the suspicious sites in detail and take the biopsy sample.
Biopsy
A biopsy of the suspicious area is performed to make a definitive diagnosis. The type of biopsy i.e., a fine-needle aspiration biopsy using a fine needle to collect a sample or oral brush biopsy, which is a newer, simpler, and more convenient method employing a small brush to collect the sample during routine dental examinations, depends upon the location of the cancer. (my emphasis)
Thanks for the information. The ENT that I did see and diagnosed tonsillar cysts did do a full scoping of the mouth and nasal areas via some video device through my nose. Sorry, I don’t know the actual name of the procedure but it was very uncomfortable! I have a deviated septum and he had to use force to get the camera in place he found nothing.
It’s all very strange. My tonsils ate affected bilaterally, which is not a symptom of tonsil cancer. Even if it was, I don’t know how a tumor would grow from my chin, wind its way into my oral cavity and end up on both tonsils. I first was concerned that it may be an oral infection as there is a while haze at the back of my mouth. The ENT was adamant that it was NOT tonsil cancer because it didn’t resemble any version of it he had seen before.
But anything is possible. His answer to why I found the cysts (which are relatively common) was that my acid reflux irritated them when sleeping at night. That would make sense because they are irritated sometimes and not others. I do have a 50 year history of incurable GERD, managed mostly by PPI’s. That was confirmed by a Stanford specialist many years ago.
But again, anything can happen. If so, the cancer would have to be extensive and mostly hidden. I mentioned my tonsillar cyst problem because of my thought that the two phenomena may be coincidental. I have seen pictures of both HPV + and - tonsil cancer, and they look nothing like what I have.
I do have another opinion scheduled with yet another ENT surgeon in San Francisco. If I am not called into UCSF, I can make that appointment. I’ll have to be pretty persuasive to get an ENT to look at both a tonsil issue and a lesion on my chin. Even good Dr’s tend to not even want to dare think beyond their specialty! But I will raise hell. I am good at that. I’ll make this ENT come to her own conclusion and hopefully she will not find my electronic records from the other ENT.
I really am trying to put 1 and 1 together here and hoping that they are independent phenomena. I have no neck lumps or swollen nodes under my jaw (basically any area I can reach).
This is where a competent PCP would come in handy. Unfortunately most PCP’s are beyond useless these days. All my referrals come from “pick a doctor” lists of specialists they give me - a 2024 version of the yellow pages.
That’s about all I can do. Thanks very much again for your thoughts and supporting info. Jon
Edit: yes , I have lost a fair bit of weight these past 2 years, but not more than 15 or so lbs — mostly attributable to my lack of desire to eat since my wife died. It’s really hard to live as “1” after living with your soulmate for 34 years.
wow Jon that's a lot of BS to have to go through. I always follow my gut feelings and have been right most of the time. And i was actually thinking this morning that not one doctor has felt my neck area or underarms for nodes. You have to be your own physician now and you better be a good one. My friends call me Dr Kerry sometimes because I can tell when something is wrong with someone else as well. I had Mohs surgery on side of my nose/cheek. The scar left behind was so high it was awful and when I went into the dermatologist/plastic surgeon's office to talk to his staff they could not believe he had done the surgery leaving such a horrendous scar! That's also what happens when you and your doctor do not get along. Sometimes it's difficult to be nice when someone is screwing you. I've had three different results on one of my many bone marrow biopsies. There were two rare cancers TPLL and MPAL and I was told not to worry as they seemed to be indolent so they focused on the AML. Well my recent lumbar puncture showed filled with ONLY TPLL in my spine and my brain. Not bad for a "sleeping" cancer. So what do I do now ? Sloan sent me to another specialist at Stony Brook who I'm seeing on Thursday after my bone marrow biopsy with current local doctor on Monday, who is a really nice guy and communicates well but I think everyone is in over their heads. It's not fair that we have to do most of the work. I've been saying I should send out bills for my time.
I politely demand biopsies on certain oddities. I do "power dress" for visits, and with a medical background, even though I am a woman, I have managed to find providers that don't dismiss me.
Know that it's possible for a benign skin thing to eventually become malignant. So perhaps that early biopsy hadn't yet turned in to definitive SCC. I wouldn't necessarily say the original report was them "covering their butt", perhaps the lesion was not classic, definitive "benign". Although without reading the report, I can't say for sure. Try to be comforted that you have found someone taking it seriously and addressing it. A good doc gives you the "worst case scenario" upfront, not because they think you have that, but to give you full information. So even if it's a mild SCC easily removed that hasn't spread, you will continue to take it seriously and make sure to notify anyone if it continues to be a problem. It's more usual for patients to dismiss doctors concerns, so that's why the good ones tell you the "worst case" up front to prevent people putting things on the back burner. They had no way to know you aren't the average, somewhat reluctant to be seen, patient. Although I agree with her, a lesion that continued to grow back in an immune compromised patient should have been addressed with a repeat biopsy sooner.
But that's water under the bridge, you have people on top of this now. I hope it's a simple Mohs with no complications. Start checking out people to come into your place if needed, to help with tasks/the dogs. Knowing I have a plan "just in case" always calms my anxiety a bit.
yeah it’s hard to get this kind of diagnosis on a Friday. I did get through to my CLL doctor at Stanford, and maybe she will call me this coming week. And the new dermatologist seems pretty confident and takes everything very seriously. I appreciate that.
Oh yes, and I “power dress” for the SF Bay area — jeans, t-shirt, and running shoes. it’s different over here. In fact, I don’t think I even own a tie!
I wasn't thinking suit It's more, wearing luxe cut & fabrics, certain colors & good jewelry definitely affects how people unconsciously treat you. Even non-jeans & a polo shirt, or resort wear, conveys something different than T-shirt & jeans at first impression. Not everyone overlooks clothing. Even a silk aloha or other collared shirt with jeans would take things up a notch lol. It's stupid, but it's a reality.
It was kind of brought home a year or so ago. I had to go to my GP for something urgent. His receptionist commented it was the first time she had seen me wear jeans. Apparently whatever "image" I had previously presented, it stuck in her mind that it was unusual to see me dressed that way.
I also noticed that panhandlers commonly approached me when dressed that way, if I stopped off at a store on the way home from an appointment. Nowadays I deliberately dress way down when grocery shopping, and I have not gotten a request for anything since. This started when I lived in Miami Beach, and crime had gotten really bad at one point. Women were getting their necklaces ripped off them right on the street, exiting the grocery store, in what usually is a decent part of town with the beach just a few blocks away.
yes , I saw that is was getting bad in fort Lauderdale in 2013 when I was on my way to a mission trip in Cuba ... I am very thankful we live in the boonies in southern Oregon .. the 4 legged animals we have around us are much more predictable then the 2 legged ones in the cities .. my wife always makes sure I have my best , semi casual clothes on , my beard and eyebrows trimmed . etc. when ever I go to the cancer clinic or to the lab .. we also get more respect at olive garden if we don't look like pan handlers ...if we are just going shopping I can even where my work shoes but no dirty cloths .. if I am by myself and have my old work cloths on the bums never ask me for a handout ...they think I am one of them ... when I do talk to them I tell them that I don't even give the beggars in the third world countries money ..... ..our son is a pastor working in India 6 months out of the year ..2 months India 2 months back home ... so when we go to the places where the truly needy and not the greedy are and we can vet them ,but we still dress down to make the people we help feel more at ease... I am glad you brought this point up .. I seldom FEEL like keeping myself presentable so I am very thankful that I have a wife that does .. blessings . James
no experience with this but sending my condolences on the death of your wife, and wishing you strength for the path ahead. Glad you are with a competent derma now.
After my mum went to the doctors about something on her neck, that was SCC, however, it was not diagnosed as SCC at the time. To that end, sadly, it was too late for poor mum. I must say I understand how you are feeling, and if this is anything for you, you have given an important lesson to those reading your post, which is, if in doubt, get a second opinion
I am so sorry to hear this! You will be in my thoughts and prayers!
Shout out to others, especially to our newer members, about the importance of having a GOOD dermatologist on your CLL team. I was lucky, by accident, that the dermatologist that I had been seeing annually prior to my CLL diagnosis was very knowledgeable of CLL. She had actually done a short rotation on it. She immediately switched me to twice a year appts (which Medicare will cover) and reminded me that the CLL will make me more prone to this and other secondary cancers.
Just another reminder that we have to be our own best advocate.
I hate hearing about these kinds of situations. I thought and hoped it was just me that rubbed doctors the wrong way, but apparently they are dismissive to everyone, regardless of who you may be.
My husband only just saw a neurologist for the first time a week ago. He was diagnosed with brain lymphoma almost 3 years ago! He's been treated by a heamotologist who completely ignores his neurological symptoms even though he hasn't been walking and barely speaks since his "treatment" started. They got him into remission but I can't shake the feeling that they did not actually treat everything. He's going for a head and spine MRI tomorrow and I'm dreading the results, because despite what his doctor says, he does not seem healthy in any way. He's in his 30s, so I don't think your age is the issue, although doctors are definitely better able to get away with dismissing older patients.
I just don't understand why people get into medicine if they have no actual intention of treating patients. They seem to just want to take the money and run, since they get paid regardless of patient outcomes. No one wants to penalise doctors because they do a difficult job, but something has got to happen to stop this trend of negligence and gaslighting in the medical industry.
I hope your treatment works out well. Maybe ask a neighbour to feed your dogs while you're in hospital?
So sorry you're dealing with this. When I was reading your post you mentioned how medicine is screwed up, that resonated with me. It seems like providers do not read path reports, or care how other physicians are treating you. I have personally had melanoma, basal cell (multiple) and squamous cell cancers. I see a dermatologist regularly Heredity and sun exposure are contributing factors but I haven't asked my dermatologist if I'm at higher risk now. I will discuss this with him at my next apt. I hope you can be seen soon .
Condolences to you. I lost my desr wife to Parkinson's in 2022. I had what I thought was skin cancer on the top of my head in 2001. After getting covid vax, i scheduled a visit to a primary care doc for the skin cancer. Doctor was much more worried about the enlarged spleen, and set me up for a blood test. Had advanced CLL. I pretty much had to track down a doc for the skin cancer on my own. Eventually i got an appointment at Walter Reed, where the dermatologist took a sample. Called back a couple days later with squamous cell diagnosis. A couple weeks later they (a Moh's specialist) removed it (had to reschedule a gazyva infusion to get it), and things have been fine since. 🤞
It is difficult to receive medical news of import on a Friday. I am not surprised you are frustrated with the care you have received before finding your new dermatologist. In my experience, patients are not respected as much as we should be.
Finding doctors who treat you rather than a random collection of body parts is important. I have traditional Medicare which I have found invaluable. We are only limited to seeing a doctor covered by Medicare. Not only does that allow us to be seen by whatever doctor we want to see but we can usually get seen sooner.
I also wanted to express my sorrow at learning about the death of your wife. I am glad you are better able to take care of yourself now.
Thanks for your condolences. it definitely is difficult to receive this. Kind of news on Friday! In my situation I have been just sitting here doing laundry and trivial things having no one to talk to in person other than my two dogs - who do the best they can to be there for me.
it’s funny how on a very quiet, upsetting weekend, how one’s mind can wander into of the dark possibilities of what could happen. I guess I’m the kind of person who always looks on the dark side rather on the light side, but it definitely doesn’t help being in a huge house alone.
If the weather is reasonable, taking your dogs for a walk to get outside might be helpful. Being outside is good for our mental health. I am sorry you are lonely.
Thanks very much. I’m almost afraid to go outside after this diagnosis because I live in California and the UV factor is off the charts. I’m talking sun that will take the paint off your car!
It was best that you kept pushing and searching. We have to be our own advocates. If I had never pushed I would not know I have CLL and if I did not push I would not know it is the tye that it is. I pray you find a dr to pay attention to you, to hear you and to listen. The specialist I just saw said to do a body check every month and keep track of anything suspicious and then get to a dr immediately. .......After all my pushing and finding out all the sordid details of my form I have decided...hey, people have heart disease, diabetes, emphyseme..a whole number of illnesses and things will pop up from time to time. My husband has familial heart disease. He has had two strokes and one heart attack. Thanks be to God he is fine and still with me. I have had two cancers already and have other health issues that pop up from time to time. What I am trying to say is I consider myself the same as any other person with a disease or illness...things will occur.....sometimes they will be easy to deal with, others will be more major....but somehow we get over it and go on and put this in the past. Having already had three cancers, one of which was basal cell (I had the Mohs surgery) you would think I would handle this one better than I do. I have a great new philosophy but that does not remove my fear of what is next or how long. All we can do is take, face, one thing at a time and pray we have more time until the next things hits us. I hope some of this makes sense. I totally understand your fear and concern. Lets hope this is just a bump in the road, even if it is a bigger one....
Your generalizations about the medical profession are over the top and quite personal according to your loss and anxiety, but not realistic . This statement: "Even good Dr’s tend to not even want to dare think beyond their specialty!" is false. And as stated elsewhere here, "Drs take the money and run" is blatantly false. Good physicians Do think beyond their particular specialty and read the medical literature, including the New England Journal of Medicine to stay current with the practice-changing advances in medicine. You had your chin lesion removed after significant delay on your part. When diagnosed and removed early, squamous carcinomas of the skin rarely spread. And yes, ideally, each person must take responsibility for their care, and must not delay when they have an issue that concerns them . And if the physician you are seeing is not responsive to your concerns and questions, then find another! There plenty of good ones, and seeking second and third opinions is common and advisable if you are not comfortable with recommendations you have received. I hope you fare well with your treatment and evaluations and can moderate your opinions of medical professionals. You will need them.
About the only thing that I agree with what you’ve said is that doctors don’t take the money and run! When you come right down to it in 2024, most physicians do not make extraordinary money. You can make 10 or 100 times that if you make the right business decisions. In fact, there are kids working at Facebook, who are no more than 25 years old making far more than many physicians in the area.
What I disagree the most about is that I feel that doctors do tend to think only within their specialty. I’ve seen it many times. Well, I was trained initially as a molecular biologist, most of the newly minted MD’s at the time we’re very limited in the way they thought. Sorry, that’s just my observation.
around here (Marin - San Francisco Bay area), most physicians are few and far between. Many people cannot even get primary care, physicians let alone specialists. And even if they do, there is a definite two or likely three month wait to even be seen. So getting second and third opinions can take a good chunk out of the year.
and no, I did not procrastinate very much getting my skin looked at. Sorry, but for six months after my wife died, I wouldn’t even leave the house. That’s called grief. As a physician yourself, you should understand that. the reality is that I was told in January that the lesion was benign. these ridiculous computerized medical record systems did not talk to each other very well, and I never got a copy of the visit notes or the biopsy report. About three months after that, I realize there was a problem, and I had to make an appointment with the second dermatologist. There went another three months. I don’t know where you think this surplus of doctors exist where they’re waiting to see you within a moments notice. It’s definitely not here. Had I gotten a proper biopsy and diagnosis on January 3, when I was told that the lesion was benign — This would be done and over with by now..
You are fortunate & lucky if you've never had the "bad doctor" experiences a number of people here are living through. And have means to venture further & further in a quest for adequate medical care.
I don't see how your reply here, to a person who has acknowledged their own totally understandable reasons for delays, is helpful At All. What is the point of chiding Jonquilo, how is it helpful? They posted looking for some support. Don't kick someone when they are down. You could have made your points without being so harsh. This site isn't Reddit, please don't lash out like so many on Reddit do, just because you can.
You can delete your response if you change your mind.
I think if you read the post that I was replying to that it would be clear that, in my opinion, I am not “chiding” anyone. In fact, I think a lot of what I was replying to was a criticism of what someone else said, not me.
in fact, what I was most upset about was the apparent insinuation that I alone was responsible for the lengthy delay. I was not. And I am of course, very touchy about that issue.
so, I thank you for pointing things out, but I was merely responding in the most polite way that I know. I don’t know Reddit, or any other social media so I cannot comment on what people say there. I do not participate in social media and consider this forum bit more so more a CLL support group.
I’m actually in surgery right now during a break while they do yet another biopsy of tissue. I’ve got to admit that this is an amazing and very efficient procedure here at UCSF. Sorry if my response is a bit broken, but it’s a difficult thing to type on a small phone screen, and I have big hands.
Jonquilo, In future when responding to someone else in a sub-post, I'm going to try to remember to include the name so there's no confusion. I've edited this thread's response.
I'm sorry I got you upset thinking I was responding to *you*, by my failure to be super clear who I meant. I can understand how it would be easy to do on a tiny phone screen. Sorry for the misunderstanding.
in the last year in addition to my CLL I had colon cancer, a melanoma on my cheek ( self diagnosed and very early) a basal cell on my nose and a squamous cell on my leg.
I know that Kaiser is not held in high esteem but the way doctors treated me was so caring and excellent I could not have wished for better care. And. My oncologist talks to my GP and they both talk to the surgeon who operated on the colon cancer who talked to the doctor who put in the pump etc etc the really good thing about Kaiser Santa Clara is they have a lot of experience with cancer and they communicate to each other. ; they treat me like an intelligent adult and they take me seriously.
My dermatologist had me come in immediately when I self diagnosed the cancer on my cheek which came from driving for so many years while the sun came into the window We weren’t told to wear sunscreen while driving !!! And after V and O the CLL is on hold for now
Colon cancer is cured, Mohs took care of the nose and the two others we treated with the specialty creams. I need to let the cheek heal to see if the melanoma is all gone. Can’t do biopsy until Sept.
if Stanford can’t give you the right treatment could you find a way to be examined at Kaiser Santa Clara? Referral ? I would be happy to share the doctors’ names who helped me through everything
I wish you all my best. You’ve gone through more than enough !
Thanks and sorry to hear you have been through SO much. To go to Kaiser, you have to receive 100% of your care from Kaiser. I’m traditional Medicare, and don’t want to change.
Unfortunately, just because i’m a Stanford patient for CLL — it doesn’t mean that thay will treat me for Squamous cell carcinoma - even if it is spread. I could try, but there likely would be a 2-3 month wait.
That’s why I have a message in to Dr Bita Fakhri. She handles my CLL, but she may not have the “oomph” to get me treated ASAP for the Squamous. The best I can hope for is that she will talk to the people (hopefully) removing it at UCSF what to be careful about with a CLL patient. of course I will ask her if Stanford will do it, but I’m not going to hold my breath. She’s a very nice person, however.
Logistically, I don’t live in the best place in the world to get help. I live in Marin. Marin county is a medical – political nightmare.! I’m lucky the dermatologist does not want to have it removed at Marin General Hospital, which has a horrible reputation. There’s some collaborative “deal“ between Marin, General Hospital and UCSF. I don’t understand how it works, most people don’t understand how it works. They treat Kaiser as a totally separate entity.
So I may live in the San Francisco, Bay Area, but living in Marin is a hindrance not a help. My wife and I used to live in Palo Alto and Menlo Park, but that was a long time ago. In fact, my wife grew up in Palo Alto. Life would be a lot easier if I still lived down there.
i’m glad you’re having good results with medical care. I hope the remainder of your problems get resolved too. Good luck, Jon.
Thanks for your caring reply. I’m in Medicare as well and I don’t have to look for doctors outside. . Yes I live in Palo Alto and don’t know problems in Marin!!
But I understand and hope you find the solutions you need and deserve. Life doesnt get any easier does it ! Wishing you well.
This certainly shows how important it is to get a trustworthy doctor that you’re comfortable with. I’ve had three Squamish cells and see the dermatologist twice a year and he has a specialist with Mohs surgery. I’m very sorry you had this terrible experience and hope that it does not, turn into something more threatening. Skin cancer is the number one secondary cancer with CLL. We need to be very cautious and diligent with our skin care.
I know after I lost my husband. It was difficult to move on and function. Well, especially since I was diagnosed a year later after he passed away from a very similar cancer that transformed. Life can really be rough, but we are able to go on.
yes, it is very difficult to move on. My wife was disabled for the last 20 years of our life — possibly longer — and we were inseparable all those years. it’s funny most people say that being with your spouse 24/7 is not a good thing to do. In our case, it worked just fine.
it’s funny, and that my biggest concern is the welfare of my two dogs. They are very high maintenance Korean dogs which we had rescued from a meat farm in Korea. They limit me somewhat and that they are very needy, but at this point I welcome it.
If there are any issues after my surgery, I can always get people in to take care of the dogs, take care of me, and do whatever I need done. I’m very lucky that way.
My husband and I were the same. After retirement, we started a small company and worked together for several more years. We were together most of the time. I do think that is why it is so much more difficult to put yourself out there and get to know other people. Covid did not help any of us especially those of us who are not the ones to seek out activities and are not exactly socially adapt. That would be me.
Hi there - so sorry you are having to go through this... it sounds similar to my own experience 12 years ago...
Now, CLL specialists (and well-informed patients) know very well that skin cancers are much more likely in CLL patients than in the general population (I think the multiplier is 8x, but that may be wrong). Shortly after finishing chemo for the CLL, I got a spot on my nose... which kept growing. I showed it to the very experienced CLL guy at the first checkup and he said: "That looks like a squamous cell carcinoma... tell your GP to refer you to a specialist to have it removed. He was right of course... but...
Someone at the GP surgery messed up the referral... time dragged on, the spot grew and grew to the size of a pencil tip... eventually, I got my appointment with a dermatologist. "Are you here for your toe"? she said, looking at her notes... then doubtfully up at my nose. "No", I said - not surprisingly. By now, it was two days before Christmas... "I don't think I'm qualified to remove that", she said honestly. "You need a plastic surgeon."
"Do it anyway... I don't want to go through Christmas with this on my nose!" I said. "If it comes back, I'll go to the surgeon then."
Well, she did her best, but it did come back. Then - phase two of the farce. I was put on the list for plastic surgery - BUT the hospital had four qualified to do the procedure. The spot was back in force, getting bigger and bigger by the day. Unfortunately, one of the surgeons had a major back problem, and another broke her leg skiing... so there were only two left. Time dragged on, the 'spot' was by now the same size as the top joint on my thumb and nearly as big as the nose itself... I was phoning almost daily, pleading with the administrators to get me done...
Finally, I was seen by the surgeon, who was impressed, and scheduled for the first op a few days later... in the end, it needed three ops - a first removal, a second 'just in case we missed something' and a third to tidy up the unicorn peak on my forehead (the nose was reconstructed from forehead tissue which had retained its blood supply, hence the 'horn'. The ops lasted 5, 5 and 4h all under general anaesthetic.
So, a gruesome tale of incompetence and delay for something that could have been fixed easily and much cheaper (for the NHS - it cost me nothing in money, but a lot in stress) if dealt with promptly... but the good news is, I'm still standing despite all that.
I very much hope that you will also have a good result from your surgery... the docs can do marvels these days, and there's no reason why you won't come out of this absolutely fine (my 'new nose' is so like the old one, people don't notice). Still - we do wish people wouldn't cock things up!
The very best wishes to you for a successful outcome.
I’m so sorry you had this happen. How horrible. I’ve had squamous cells twice on my leg. And I put on a cream until they went away. I insist ( I ask nicely) on full body checks four times a year and I have a wonderful Kaiser dermatologist who is so responsive. Hope it’s all taken care of for you now.
After my 'nose job' I was checked by the plastic surgeon every 3, then 6 months for 5 years, but that has finished now. The NHS is not funded as well as it should be, so although I'd push if I had a worry nothing in particular has cropped up since, so I leave the docs alone. You can be sure that if any suspicious/growing spot appears, I'll be on it!
Having said that, it was only after its third or fourth appearance that I asked the GP about a very weird spot that would appear, then go away again... he had no idea (thought it might be Lyme disease, but I felt fine) and sent a photo to a dermatologist, who diagnosed:
My concern is that Squamous cell carcinoma can metastasize via the bloodstream if left long enough tomdo so. CLL patients are considered “high risk” for this very reason.
My SCC lesion has been there for abou 1.5 years and may be large underneath (it will be excised in a few hours). So there is the potential for SCC to travel to distant places, not necessarily on the skin.
Only a PET scan can detect this kind of spread.
The difficult part has been getting any physician in the “chain” of detection and treatment to venture beyond their niche and put CLL , long term tumor growth, and possible SCC spread together. Specialists are so specialized these days that very few go beyond the specialty, leaving primary care physicians left to sit there and connect the dots — something that they generally are not capable of doing.
If the SCC has spread, by best hope for successful treatment is to catch the spread as early as possible. Had I known back after the original biopsy in late December that this was indeed malignant, prompt removal would likely be sufficient. Unfortunately, the original biopsy report was inconclusive, I was told the lesion was “benign” and this added another 7-8 months to it’s correct diagnosis. Only until the lesion started to grow back did I fight quite a bit to track down the original biopsy report, which was left as an analog file buried in a digital system that I had no access to.
My second (competent) dermatologist said to me that CLL should be an immediate red flag for any SCC lesion that has been around longer than it should be. Hopefully this will turn out to be not the case. But a wait and see approach here is not the best way to deal with it. As I am learning, CLL — even long before needing treatment— can really put us at risk for lots of secondary issues. It doesn’t help that many physicians do not understand CLL, nor do electronic medical record systems emphasize it’s importance than it would a deviated septum. This leaves a good deal of our medical care advocacy to us.
You are absolutely right - I was not only scared by the visible growth on my nose, but terrified that the cancer would spread as you mention. I very much hope this has not happened in your case. Any surgery will need to be careful and thorough - although I didn't exactly rejoice when my surgeon said he was going in for a second time ("belts and braces", he said) I preferred that than taking the risk that some cancer cells had been missed. As for spreading... presumably I got lucky there as I assume something would have happened by now, 11 years later.
All the best to you for a successful treatment and outcome.
I had the procedure and it was fairly straightforward. It took about four hours or more. The hardest part was waiting for the biopsies to be done. UCSF has a very good surgery center for this, though it is a bit of the factory.
Right now I am trying to negotiate with doctors what scans they want to do to follow up on the problem. Most of them agree I need something scanned on the other hand many of them do not want to be involved in it. Why am I not surprised?
Thanks for your kind words, I appreciate them very much!
So sorry you are dealing with everything alone Jon. Yes, i have had to be super proactive concerning skin cancers with full body checks every 3-6 months because the doc always finds something which needs attention! My latest was a biopsy which is also squamous which now needs surgery! CLL folks do need to be more vigilant about skin issues so one must also be aggressive about medical appointments! Hope you find a new dermatologist who will be more empathetic about a CLL patient who already has enough to to cope with! Best of luck!
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It's more, wearing luxe cut & fabrics, certain colors & good jewelry definitely affects how people unconsciously treat you. Even non-jeans & a polo shirt, or resort wear, conveys something different than T-shirt & jeans at first impression. Not everyone overlooks clothing. Even a silk aloha or other collared shirt with jeans would take things up a notch lol. It's stupid, but it's a reality.
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