Dx’d with bladder cancer 2 years ago. 6 tumors found a week before my 30th b-day. Had them removed and close follow ups to see if reoccurrence every 3-6 months since then. All was well until… Yesterday. Had another check up and now 2 new tumors. Waiting to schedule surg to have them removed and get chemo (mytomicin) put into my bladder.
Does anyone else have lupus and bladder cancer?
Also does anyone get massage therapy and get insurance coverage? If so how is the script for it written? I have recently started going to a medical massage therapist for lymphatic drainage and need it weekly but it’s getting costly and just wondering.
Thanks!
I only have Lupus but have looked into insurance covering massage therapy. The only thing I was able to find out was that my insurance had some sort of arrangement with one massage place I looked into that offered a discount on their monthly membership. I had Blue Cross insurance & I believe it was called Healthy Blue. I’m sure there are other locations that have arrangements with insurance companies.
There may be a genetic link for autoimmune Dx & cancer. My cousin's daughter has lupus. My mother's sister had Psoriasis, my son has Psoriasis. My mother's brother had bladder ca. Have your Vit D level checked, deficiencies have a link to Ca according to my Dr, especially since Lupus causes sun sensitivity & keeps pt's from getting much sun you could be low on Vit D
I have interstitial cystitis and medullary sponge kidney along with sle lupus. I have a terrible time and now, even though i get meds for the interstitial cystitis, i am starting to have pain in my bladder area. It’s isn’t vaginal, it’s bladder but i know ut hasn’t fallen. What are the signs of bladder cancer? I am in pain and trying not to think the worst. I do have a terrible time with infection because of my kidneys. Please let me know and also, my chiropractor gave me free electronic acupuncture because he knew I was having a lot of kidney stones and he was trying to relieve the pain. maybe since you have been paying so much they’d be understanding and give you a discount or something. I really hope it works out for you.
Brandy- Follow up on what Ann A’s advice is. Yes, for drainage purposes my insurance company pays for it. I actually have mine paying for OT for my vocal cords. I have them also paying for MT and acupuncture for pain. I have SLE too, no cancer yet, clotting issues R/T liver issues. It was extremely difficult to finally have them start paying for non traditional therapies. I am a RN and I had to provide a lot of data to back it up… The joys of lupus! Good Luck and prayers!
Nothing to offer by way of advice. I just want to let you know I'm crossing all fingers & toes & wishing the very best for you. Kaz xo
I take vitamin D supplements bc my vit d level was low a few years ago but I am not sure if it has been rechecked since then. it would be nice to know what it is now and if the supplement is working. Thanks for the reply.
OC GAL said:
There may be a genetic link for autoimmune Dx & cancer. My cousin’s daughter has lupus. My mother’s sister had Psoriasis, my son has Psoriasis. My mother’s brother had bladder ca. Have your Vit D level checked, deficiencies have a link to Ca according to my Dr, especially since Lupus causes sun sensitivity & keeps pt’s from getting much sun you could be low on Vit D
Thanks for the feedback. I have BCBS as my secondary insurance so ill have to check that Healthy Blue thing out.
escape183 said:
I only have Lupus but have looked into insurance covering massage therapy. The only thing I was able to find out was that my insurance had some sort of arrangement with one massage place I looked into that offered a discount on their monthly membership. I had Blue Cross insurance & I believe it was called Healthy Blue. I’m sure there are other locations that have arrangements with insurance companies.
Hello Destiny. I had blood in my urine microscopically about 75% of the time with no infection. Meaning the urine culture (microscope check) was always negative for any Infectious organisms. Meanwhile once every 3 months I’d pee and it would look like cherry coke. By the time I got a doctor to see me for it it would clear up and just be microscopic blood or none at all. Again, I was told it was "just lupus"
Finally after 2 years I learned to take pictures so when I peed the cherry coke looking pee, I grabbed a throw away cup and peed in it then took a picture. I later showed my doctor who was impressed by this and sent me to see a urologist. During the same time I had pelvic discomfort. Nothing that really required medication but felt a pinching pressure (especially when i just about needed to go poop) and had to pee pretty often and woke up 2 or 3 times in the night to pee. I didn’t ever complain abot the pelvic pain because im sure you all get tired of complaining about every little symptom so you just talk about the ones that seem most unusual or abnormal bc they start to look like you are crazy and cannot possibly be having so many symptoms. Anyway… No doctor thought about bladder cancer with the bloody urine because it as very u likely that I would have it because it is rare for a young female to get it. Usually old men who have smoked all their lives do… Granted I did smoke from age 15 to 27. But by the time I was diagnosed I hadn’t smoked for a few years. Good luck to you and I hope you get some answers and clarification.
Destiny Scott said:
I have interstitial cystitis and medullary sponge kidney along with sle lupus. I have a terrible time and now, even though i get meds for the interstitial cystitis, i am starting to have pain in my bladder area. It’s isn’t vaginal, it’s bladder but i know ut hasn’t fallen. What are the signs of bladder cancer? I am in pain and trying not to think the worst. I do have a terrible time with infection because of my kidneys. Please let me know and also, my chiropractor gave me free electronic acupuncture because he knew I was having a lot of kidney stones and he was trying to relieve the pain. maybe since you have been paying so much they’d be understanding and give you a discount or something. I really hope it works out for you.
Thanks Bernadine. I am an RN as well. I have secondary coverage also and I called both companies but the reps. I talked to acted like it was dumb for me to ask such a question and my doctor several months back didn’t know what to write so I have never known the appropriate terminology for the order to be written out as. I asked both of my insurance companies if my plans covered “medical massage”. Thanks for the response. I bet your right about it taking a lot of documentation to back the need up. 
Bernadine said:
Brandy- Follow up on what Ann A’s advice is. Yes, for drainage purposes my insurance company pays for it. I actually have mine paying for OT for my vocal cords. I have them also paying for MT and acupuncture for pain. I have SLE too, no cancer yet, clotting issues R/T liver issues. It was extremely difficult to finally have them start paying for non traditional therapies. I am a RN and I had to provide a lot of data to back it up… The joys of lupus! Good Luck and prayers!
Thank you very much! It is very much appreciated! 
Kaz said:
Nothing to offer by way of advice. I just want to let you know I'm crossing all fingers & toes & wishing the very best for you. Kaz xo
Hello. I too have a smoking history. I grew up with both parents smoking and I started at age 15 but (only with the grace of God - I quit at age 27. I have researched lupus and bladder cancer so much but still wonder if there is a correlation between it actually being ‘bladder’. I have nobody In my family with cancer. My grandma had SLE but died at age 56 (i was only 15 at the time) from complications of SLE and COPD.
I just thought it was strange that the bladder cancer came back… I’m not sure why I am so supposed thought bc I do know the rate of reoccurrence is extremely high for cancer if the bladder. Thanks for the reply. Best of luck to you and your family!.
Bumps said:
It’s crazy that you should ask this…my mothers cousin (their mothers are sisters) has Sjögren’s, my moms sister has lupus, I was diagnosed with both and have been dealing with my moms bladder cancer since January (bladder cancer advocacy network is a great place to learn about that) but I have been assuming my moms BC was due to a history of smoking but might have her doc run her antibody tests and see what might be up…weird, huh??? Sheesh, it’s always something…ugh!
Brandy
I have lupus and bladder cancer! I have had blood in my urine since I was 17 years old. I also have had 13 kidney stones over my life time. I was dx with the bladder cancer (TCC) in April of 2011. I am scoped every three months and have been clear since the initial dx and removal of the tumor, but I continue to have blood in my urine. A lot of people with lupus have blood in the urine, I also have protein from time to time. I see a Urologist and a Nepherologist and was told that the blood and protein can come from the inflammation of a flare.
My father had bladder cancer (TCC). He was treated with chemo placed in the bladder. He had about 50 to 60 bladder tumors before he pasted away last December. His death was not caused by the bladder cancer, however he suffered with the bladder cancer for 30 years.
I did some research on lupus and TCC and really found no Correlation between the two. I smoke so it can be from that or from the family history of bladder cancer. My urologist seems to think it was caused by the history more so than smoking.
If you find out anything more please let me know.
Deenie
I had surgery yesterday to remove 2 tumors From my bladder. Now waiting on the pathology report. Ill keep you all posted when I hear the results.