I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: MooseMom on October 13, 2019, 07:53:46 AM
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I've had my tx for seven years.
Before my tx, my neph noticed some spots on my back he said were AKs, which I assume is short for actinic keratoses. He said nothing more about them.
Since tx, I've developed a few more including one On each side of my neck. What is odd is that when I saw a dermatologist about 5-6 years ago, she noticed them but voiced no concern.
Not only that, but each year I see the tx neph, and when she checks the glands on either side of my neck, surely she both sees them and feels them. She has never discussed them with me.
I'm the past year, I have developed one that bizarrely bisects my tx scar. So, I've decided to leave my den of denial and have made an appointment with my pcp which I assume will result in a referral to a specialist.
Of course I've turned to the internet to scare myself silly but thought that the best place for good info is right here on ihd.
If you've had this problem, how has it been treated and what was it like for you?
I appreciate any first hand information you can give me. Thanks!
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as a middle aged woman with fair skin, I've had twice a year visits for years with my BFF the dermatologist who freezes or electrocutes multiple lesions on my face/torso. I had 2 basal cells about 10 years ago and had some AK and sebaceous hyperplasias all prior to transplant. I know that myfortic promotes the growth of sebaceous hyperplasias and some skin cancers are more common in transplant persons, so I thought it was just standard to find a dermatologist and see them on a regular basis once you've had a transplant.I would imaging that your areas of concern are likely something you would have had anyway ( ah-hem, at a certain age) but best to see a dermatologist on a regular basis. Actinic keratoses are so common and benign that most doctors just ignore them.Many insurances won't cover removal of AK's unless they are irritated, bleeding, etc. I think they just freeze them unless they are too big. my dermatologist zapped/froze one on the back of my leg this past time and it scabbed up and fell off. I did not get a bill (so far).The sebaceous hyperplasias look like flesh colored raised areas on my face that she electro zaps-feels like a sharp pinch for a second and my face twitches but doesn't really hurt.
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Thank you for your reply. You seem to be something of a pro at this! Yes, I am older so you are right that I probably would have had things, anyway, and yes, you would have thought that all tx people would automatically be sent to a dermatologist. I seem to remember having to request a referral.
From now on, I will be more insistent in getting referrals for more regular appointments.
AGain, thanks, Cupcake!
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Somewhere along the line I must have been told I should see a dermatologist every year after transplant. Every year I have a crop of little bumps and flaws cryo'ed off. Every year I grow a new crop. I'm fair with light eyes, so this would probably be happening anyway but I think I wouldn't have so many if it wasn't for the drugs. The incidence of skin cancer is scary higher for transplant recipients. I think whether or not insurance covers these burns might relate to where you live. Years before I had my transplant a dermo in Massachusetts told me I would have to pay for having some blips burned off and I did. Since I've been in sunny Long Island I haven't had to pay for any removals. Part of it might be my age but I think climate figures in. I've also learned that if it "bothers" you, it is relevant too.
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SooMK, it never occurred to me that the removal of these things wouldn't be covered, especially in the case of a transplant patient when the cost of treating a resulting cancer would be a lot more expensive. I will have to sort that out with my pcp.
These spots have never bothered me, which is probably another reason I've put off doing anything about them. But that is really no excuse. Just me being a bit of weenie.
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MooseMom I hope that you check out fine. I'm not yet had a scare, so I can not share on that, but I did see a dermatologist last week, so I thought I would share that visit.
My neph wants me checked yearly post transplant. This year, my second visit at The GW Medical Faculty Associates doctors (the hospital doctors' independent private practices) dermatology team, I saw a woman who said her husband was the person who follows transplant dermatology there and I should see him next year, but at just over two years out I should be fine - implying that the post transplant skin concerns are a bit further out for me.
She looked at my various moles and discoloration and felt everything looked ok, but she said I need to do monthly self checks and if anything starts growing to call in. She mentioned that the skin cancer can grow fast in post transplant and that the yearly visits might not be quick enough so I should be doing my own checks. I also mentioned/showed a mole that I pulled a long hair out of recently and she said that was fine and the hair was an indication of healthy stuff versus bad stuff.
I have a lot of moles and spots (a lot being say 30 across the body), and based on this website I have to say that only the "Evolving" "The mole is changing in size, shape, or color" in the ABCE guide is something I'd notice:
https://www.cancer.org/latest-news/how-to-spot-skin-cancer.html
I think the dermatologist mentioned similar bad signs mostly relating to the spot changing in texture of the spots, so be watching for dry, rough, inflation, bleeding etc. being bad as compared to what is more normal and healthy with smoother skin that might have smooth textured rises in them.
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Thanks so much for that, iolaire. The spots I am concerned about are all rough in texture, but that is the very nature of these actinic keratosis thingies. I wish the members of my various medical care teams had more strongly emphasized the need for more frequent screenings.
I have done self checks, but now that I have passed the 5 year mark, I'm thinking that's no longer enough.
I'm a little miffed about the lack of care by my doctors in this regard, so I messaged my tx coordinator and asked her to liase with my pcp before my scheduled appt on the 24th in the hopes that she will read between the lines and realize that the proverbial ball may have been dropped. I am abroad at the moment and am also a bit miffed that I have to wait until I'm home before I can see a doctor.
Anyway, thanks again for telling me about your own dermatologist visit. That was really informative!
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Update of sorts...
I saw my PCP's assistant a couple of months ago; she was more concerned about the fact that I was overdue for a mammogram than she was about anything she saw on my skin, so that's good news. However, she did say that since it had been so long since I'd seen a dermatologist, she'd arrange a referral for me.
I received the referral a few weeks later (this would be Nov. 2019), and it gives me "permission" to see a dermatologist at the same place I'd been seen back in 2004. It's a hassle because the practice is a good 40 minutes away, but OK, my medical group comes between me and my doctor, right? The name of the derm I'm supposed to see was different, though, so I'm guessing the lady I saw before is no longer there.
My appointment is for next week. The doctor is authorized to ONLY look at my skin, and if anything needs to be done, I have to get a referral for THAT. Ok, fine.
Anyway, for all this time, I've been really nervous about this appointment. To be honest, I don't have any spots that have changed, so there's no rational reason to be anxious.
But last night, I realized why I'm so anxious. My appointment is with a male dermatologist.
The last time I was in any way examined by a male doctor was back in 2012 when a transplant surgeon looked at my incision to make sure it was healing properly. Everyone I've seen post tx has been female. My tx neph is female. Her assistant is female. Every coordinator I've had has been female. Even all of the people I talked to during my pre-tx assessment (to get on the list) were female except for one surgeon I spoke to. When I go for bi-monthly labs, everyone there is female. My PCP is male, but I have not seen him in years; I see his female assistant on a yearly basis. The tx meds pharmacists in Madison are female (at least, every one I've ever talked to.) The staff at the imagine center I go to are all female (when I need a mammogram or a bone density test.)
I confess to being surprised about my concern. It has no basis in logic. But I know nothing about this dermatologist I will be seeing next week. What if he is creepy?
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Your anxiety might not be based on logic (as you already know!), but it’s still a very real feeling for you.
My experience has been the opposite: I’ve had a very male dominant tx experience. The intake nurses and (half) of the receptionists are the only women I encounter. All the doctors and fellows have been male. During the transplant work-up, many of the technicians were male too, even for a dreaded trans-vaginal ultrasound. My local nephrologists are male but the tx nurse is female. (And I spend more time with her at appointments.)
To be honest, I cannot say anyone set off the creep-o-meter, but it does make me reluctant to ask questions in regard to female things.
That said, I do have a female GP now (who really, I have no need to see, but she insists I need to see her every 3 months). I have a female ob-gyn and I’ll experience my first Pap test (with her) soon. Naturally, though female, I am not at ease either. There are certain medical appointments where we never are at ease.
It’s my understanding that a tx dermatological assessment means checking the body all over, so, disrobing right? That’s a natural anxiety, I think. You can always ask for a third party in the room if you are super anxious, though, that may heighten any nervousness too.
The majority of medical professionals do their job in the least creepy manner possible. Creeping is last thing on their mind when they are professional people. You are a bright woman so you know this already!
You can always read online reviews of that specific doctor and see if there is a pattern of creepiness or if they have a low rating. From reading those sites, I’ve found them to be reliable (in general) in preparation for appointments, like if a doctor is abrupt, rude, or personable. There are those ones by individuals with an ax to grind, so best to look at them in bulk. Worth a shot?
Very sorry that you feel anxious though. :(
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I saw a dermatologist for the first time this week. It really wasn't bad at all. After being in the hospital and undergoing all the tests pre and post transplant, I wasn't self-conscious at all (but I was lucky enough to get a woman doctor). She mostly talked all the time she was examining me, addressing a couple of my concerns about moles I had and educating me about the different things to look for and the additional risks that come with being on a immune suppressants and having fair skin. She said they like to see transplant patients every six months to a year and get them in immediately if an identified spot changes. All of my spots and moles are normal, so she had no concerns. I have to go back in six months but if all is stable then I can go to yearly visits unless something comes up that I am concerned about. I don't remember all the different types of cancers she described as possibilities (I guess I should educate myself a little better) but one of them a transplant patient has 60 times the normal risk because of the immune suppressants. The good news is that they are all highly treatable if caught early. However in an immune suppressed person it can progress rapidly so regular checks and self-monitoring is important. I don't remember exactly what the transplant center said about it, but they told me to set up a dermatology appointment and I had the impression they wanted yearly visits. The dermatologist asked for the transplant center contact info so they could send a report.
All in all, it wasn't bad. The exam was quick and I was out of there in less than an hour. It was reassuring to me to have someone good to monitor things given the risks. Especially since I am so fair-skinned. Interestingly, she talked about limiting sun exposure and using sunscreen regularly, but she said the best protection is clothing. Guess that makes sense.
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Thanks for that, tigtink.
I did have a post tx skin cancer scan one year after my tx and had a mole removed. It went pretty deep, and while the anaesthetic worked just fine, after it wore off, it was very sore for about a week. I do understand the heightened risk of the various skin cancers. I do wear sunscreen and avoid the sun during the most dangerous times of the day, but I'm sure I could do better.
I suppose I've just become unused to seeing a male health practitioner. It's odd, isn't it. I don't know when health care became such a female oriented profession, at least in my experience of the last 10 years or so.
I'm sure everything will be fine. Thanks for your response, and congrats on getting reassurance from your own exam!
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I have a mix of male and female doctors but, when I can, I opt for female doctors. I usually request the same female PA when I go to the dermo. I saw the actual dermatologist himself only once, just to be acquainted with him. My PA said they leave the exam of the intimate parts to the gynecologist. Fine with me. I know three people, non-transplant patients, who have had basal cell treatment in the last year, so that's disturbing. Although all of them are big outdoor folks. Even my "real men don't wear sunblock" husband has had a concerning spot taken off his back. It just makes me realize how we transplant patients must be ever alert. Although I'm somewhat anxious for any of these appointments, I've had so many medical appointments in the last 5 years that I am unable to maintain the high anxiety which used to be my default mode. I will be interested to hear your follow up on this. Hope all goes smoothly, MM.
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When it comes to choosing male vs female doctors, I try to choose the one with the most schooling and experience. I also like to know what hospitals they have privileges at. If they have any training from New York that is bonus for me because doctors there tend to see a lot more there than other cities. I use to just want female doctors but the older I get and the more serious my health issues become, the more I want the best possible doctor to help me. I'm not worried about the creep factor....I just want them to do a thorough examination and tell me the game plan. Just this past year I have had to endear many-an-embarrassing test and situation but thankfully, the young men and women who took care of me were real professionals -no creep factor. They've seen and heard it all and they are there to help you. So if I have to get naked, I get naked and do whatever needs to be done to complete an exam, procedure or test and put faith into the professional who is helping me. You help them to work with you it goes a lot easier and faster. So read their bios online if you can and even ask questions but go with experience. Good luck.
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Thank you, SooMK and PT.
PT, everything you say is absolutely correct. I am sure the doc I will be seeing is highly qualified as I have indeed looked at his bio. Unfortunately, my HMO gets the privilege of decided who I will see, so I have no real choice in the matter, but I am sure he will be fine.
I have never in my life felt anything but the "just do what you need to do", "you are not the only patient these doctors see", "you and your skin will not be memorable" mantras, so I am surprised by how I have reacted viscerally to having to see a male dermatologist. I suspect I have had this underlying concern for several weeks but could not put my finger on the reason for my concern.
And then I saw the CNN interview of Andrew Yang's wife who said that she had been sexually assaulted, while pregnant, by her ob/gyn. Eventually this doctor had his license rescinded after years of investigation. She'd never told anyone, not even her husband, for many years. I know it is not a logical leap from her experience to my upcoming appointment, but nonetheless, that's a leap that my head has apparently taken.
I am sure it will go just fine. I do not have a history of being silent with doctors, nor do I put them on pedestals. I was just surprised by my reaction, which is an overreaction, I'm sure.
Anyway, thanks for listening!
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Well, :yahoo;
I had my skin scan, and everything is fine. My various cutaneous weird bits are all "normal". The doc was not overly friendly and was very professional. I will see him again in a year.
End of.
Thank you, everyone!
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Good news my darling
:cheer: :cheer: :cheer:
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Hurrah!
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Thank you, cass and Soo. I am mightily relieved. Sometimes my little brain can be my own worst enemy!