Need Tips, Leads, Resources, Support
I just found skincancer.net a few days ago, I need help with a lot of different things as fast as possible! I am a bit overwhelmed here...
Protection, remediation of precancers with Effudex, how to afford that, how to afford radiation therapy co-pays for BCCs on forehead and nose, how to afford contacts because I won't be able to wear my glasses part way through the radiation... So much at once!!!
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I am searching for everything I need to protect myself from the sun again. I have had squamous cell and basal cell carcinomas removed since I was 26, in '76.
I used to know all this stuff, and had my own sun protection practices - never went out between 9 and 4, always with SPF 50 sunscreen if I had to be out. No sunbathing *ever*.
But I developed multiple disabling difficulties, lost jobs, lost the ability to work for the last 12 years. I was barely surviving on my SS, had no money for so many things including sunscreen (going to food banks these days). Then I slowly forgot and fell out of even the sun avoidance practices, walked my dog at mid-day. Even started wearing sleeveless tank tops! Still no sunbathing, but man, looking back that's lax for me. I am in Florida, and not only cancer prone, I am heat intolerant! Hence the sleeveless tops.
Now I gotta catch up, and do much more too! And I feel pretty urgent and frantic and really scared and I have been searching everywhere trying to nail down what's needed and affordable!!! And going nuts trying to narrow it down. Help!!!
I am searching for skin cancer support groups too.
A few years ago, I had a basal cell carcinoma in the middle of my left cheek removed by Mohs surgery. Because it was somewhat deep, the doctor had to extend the margins quite a bit to make a suture line that wasn't puckered. That left about a 4-in scar on my cheek, which was a bit to get used to.
Next, I had another basal cell carcinoma removed from the back of my neck. This was another Mohs surgery, but this time I told him to just let it fill in as scar tissue. It doesn't bother me much.
I still didn't have the money to go out and restock on sunscreen or any other protective devices. Not even a hat.
Recently, I had 2 more basal cell carcinomas diagnosed on my face. One on my forehead, one on the inner wall of my nose, very close to my eye. Oh, joy, what fun... NOT!
And my dermatologist wants me to start using 5-FU on all the precancers waiting to pop. That sounds like a real fun carnival too.
Now, I am really scared!!! I know that everything coming up cancer is from old sun damage, of course added to by any new sun damage. I feel like I need to get everything on board immediately, in fact, yesterday.
Because of a housing change, I can afford a little bit more per month now. But I am still limited to about $100 - for everything, including the 5-FU.
I understand the community rule about no buying and selling.
Do you have resources that can point me in the direction of where I can get a good quality but affordable sunscreen, protective hat, and afford to start the 5-FU? I feel like I need that much at a minimum, right now.
I would love to get suggestions for good protective clothing too, but not high end, for later. Hopefully my heat intolerance can handle them! Aaarrrggghhh...
I really want to stop this progression now!
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Aaaand there's already an update hinted at in my opening. I was referred for a consult with a radiation therapist to consider radiation therapy for the BCC on my forehead, since the skin there is fairly thin and there's not a lot there to dig deeper to bring suture lines together after a Mohs. And then I had another biopsy on the wall of my nose that came back as a BCC, very close to my eye. I really don't want to lose part of my nose, or get into plastic surgery. I do think radiation therapy is the way to go, but I would love to hear other people's experience in this area, whether you went with surgery plus plastic surgery or radiation therapy, which was costlier, and what sources you might have found to help pay for the co-pays.
I do have a Medicare Advantage plan, don't know yet what the co-pays will be for either option, but I'm sure it's going to be out of my budget! If you know of any resources that could help me with that, I would very much appreciate it.
Thank you,
Moon R
And yes, I plan to do a lot of browsing here today!
...Bless your heart. You have just been hit from all sides with this. I know you are completely beside yourself. When I find myself beginning to feel overwhelmed, I try to take a step back and tackle one problem at a time.
Sunscreen--This is a great time of year to find sunscreen. Some stores are putting those items on clearance---though sun safety is a year-round effort---you can find some stores selling them cheaper right now. I find that mineral sunscreens like the ones sold by Australian Gold go on smoothly--a little goes a long way. They are some of the most affordable of the ones you can buy in stores like Walmart and Target. You might even be able to find them cheaper on eBay or Amazon.
UPF clothing is a great idea, but you are correct. Those items can be pricey. I have been able to find a few items in thrift stores. Another idea is to use a laundry detergent that is made to add SPF to your clothing. Rit makes a detergent that adds a sun protection factor to your laundry. Sunguard is another option. Both can be found on Amazon or at Walmart. I would call ahead or do a store availability search to make sure my local store carried it before I made a special trip.
If buying items is not in your budget, I would begin by trying to adhere to early morning and late evening outings if possible and trying to wear sleeves-- I know. I love a good sleeveless summer top, too! I feel your pain.
I am going to give you a link to a fantastic support group on Facebook. This group is for members using Efudex. It has been a real comfort to me over the years and has just the nicest folks always willing to give advice and support.
https://www.facebook.com/groups/191070307590515
I wish I had more answers for you on the radiation option. However, I am going to tag a fellow advocate who might be able to chime in with some advice.--Can you give us some insight on radiation therapy?
I am including a few articles on Efudex in case you haven't already run across them in your browsing.
https://skincancer.net/life-with-skin-cancer/tips-for-efudex-users
https://skincancer.net/life-with-skin-cancer/efudex-side-effects
Please know we are always here for you! Keep us updated on your progress.
April, SkinCancer.net, Moderator
wow, I really hope everything works out for you. As far as radiation therapy goes, typically superficially radiation therapy (SRT) is covered by medicare programs. Of course it will vary from office to office but the office should be able to tell you what costs you are looking at, and always ask if they can set up a payment plan if you need it!
The side effects are typically mild for SRT and may be red like a sunburn and tender but your radiation therapist will be able to point you in the right direction for skin care during treatment. As I am not treating you myself I can’t speak to exactly what your treatment will entail, but don’t be afraid to ask questions to your dermatology team.
Also dermatology offices often get sunscreen samples and I know that I am always handing them out to make sure my patients are protected, ask if they have any samples!
Best of luck, and I am here writing articles about superficial radiation therapy so feel free to check those out and ask any questions you have! I’ll be here to answer!
-Rach the RTT
