Last summer, my doctor recommended a different doctor whose office is closer to where I live. It will be much more convenient which means I may actually go more often. We're supposed to set up narrowband UVB treatments again. With the immense amount of stress I was under with selling our house, my 60 hour a week job (that doesn't qualify for overtime), and my 20 hour a week volunteer gig, I was going insane. I've gotten new spots on my legs, arms, and back. None are terribly bad but new spots, especially in so many different areas is still concerning.
I'm hopeful that I'll like the new doctor, but at least if I don't, there are two other doctors in the same practice that my previous doctor said would be good to see. Also hoping that I can get the UVB set up quickly and get back to being clear soon.
Been diagnosed this year, it is really a confusing disease. I have had it I think for 15 20 years, I have patches on my underarms waist and buttocks area. Not sure what to do, if to consider myself a cancer patient or not. Been treated with steroid cream at the moment. Have you had tests for visceral involvement? I just had biopsy and blood test, I feel like should have more tests done.
ReplyDeleteI've had a biopsy which is how I was originally diagnosed and a blood test several years later which came back with no cancerous cells found in the blood.
DeleteTake my advice with a grain of salt, I'm not a doctor. My opinion is that if you're just at the patch stage, further testing isn't needed. Of course if anything extends past just patches, see the doctor immediately. I felt the same way as you when I was first diagnosed. I wanted every possible test, a second opinion, the works. I went to MD Anderson in San Antonio to see their specialist and I really wished I hadn't. She did a ton of tests on my blood that were unnecessary (HIV, hepatitis, and about 50 more) and then charged me $1200 for the 1/2 hour regular doctors visit. It didn't help me at all. If you have a doctor who has experience dealing with CTCL, then you don't really need anything else.
I didn't have any success with steroid creams, but everyone's body is different. Stick with whatever you find works for you.
It is a weird disease to have. Although technically cancer, it's so slow moving and the symptoms are treatable, so it can be kept at bay without a huge amount of difficulty. Being stage 1 (patch stage) also means that as long as you keep up with treatments as needed, you'll probably be fine for the long haul.
Best of luck and let me know if you have any other questions.
Thanks for your kind reply, I am going through mood swings, if I don't think about it, I feel everything is normal, I feel great, then thoughts start to come back. It puts you in a lonely place. Anyway had a nice party with friends (who don't know) yesterday but thoughts came back this morning.
ReplyDeleteHave you told your friends or at work? I have told only to my family but I do not let my worries show. Anyway, I wanted to thank you again for your reply. I wish both of us a great 2018 :)
I told all of my family, friends, and colleagues when I was first diagnosed, wanting to be open about it. I do regret telling my work at the time. I'm a teacher and told the students I interacted with first. The reactions were overly sweet but I didn't realize that when I told everyone, that would be the first thing they associated with me. I got a lot of offers from parents to bring me food (which was completely unnecessary). They all thought the worst, even though I explained that I would likely live a long healthy life with it. I became the teacher with cancer.
DeleteWhen I changed jobs almost 3 years ago I decided not to say anything about it. It's been nice to not be the teacher with cancer, but instead just a teacher. If I ever get to stage 3 or 4 I would likely tell my work, but probably not ever if I'm only stage 1 or 2.
Best in 2018!
Hi had a inconclusive biopsy for suspect MF. The markers were there but not enough evidence for diagnosis. I have had these dry patches on my back for over 49 years and was always told it was contact dermatitis. Any recommendations. My Dr was wanting to treat but without a diagnosis I feel a more conservative approach would be best
DeleteThere are fairly conservative treatments available that are worth a shot. Prior to my diagnosis, when the doctors thought it was just bad eczema, I had come to terms with nothing working and that I'd have the spots forever. After diagnosis, getting the narrowband uvb treatment was worth it. It's a very quick treatment (mine are one minute long but tanner/darker people need longer) and is no worse than a tanning booth. If you only have patches (and are not stage 3 or 4), then the treatments will likely not be too big of a deal. It's worth it to try and take care of the spots though. Follow whatever advice your doctor says. If you think the treatment they suggest is too aggressive (more than a cream or light treatment), definitely find another specialist for a second opinion, just make sure they have experience with CTCL.
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