From what I've been told it's some.
Skin cancer, breast cancer, cancerous brain tumors, ovarian, MPNST, colon cancer and some other soft tissue cancer and leukemia.
I didn't say they are or are not treated the same.
But people with NF are more likely to get gliomas and astrocytoma and the treatment after surgery is absolutely different than a normal nf brain tumor or non cancerous tumor. I have had a brain tumor mine was non cancerous they took it out and that was that. My dad had an astrocytoma and they removed it and he got chemo and radiation.
I'm just saying what I've been told by my daughter's neurologist and neuro oncologist when she was being treated for her optic gliomas.
The idea of brain tumors is terrifying for many parents here, and double so when they see oncology
I was so shocked to find this out, why do they tell us we have normal life expectancy when MPNST only has a 6% survival rate at five years and 10% of us will get it? Our survival rates for it are probably lower too.
And taking reducing cancer measures, probably only reduces the initial chances. Only saying that since I’m guessing no research has been done on it yet. But I know exercising is a big one and helps with recovery. Like I was diagnosed with MPNST this January, removed not even 36 hours later. And my doctor said the only reason why I recovered so fast (I had 50% better ROM after surgery than baseline) was due to exercising
I hope you do well, I know MPNST is extremelly dangerous.
Luckiky I checked a plexiform neurofibroma (neuroligist called it plexiform in 2009, I am 2003 born) now did an MRI and MRI said it's localized. So at least my risk of MPNST is reduced.
My MPNST grew over a golf ball size overnight. I didn’t have a bump the day before, and the next day there was a bump😂 thankfully I had a brain MRI the next day, so I was able to get my upper back/shoulder done as well. (Where tumor was). They said if they removed it a day later I would have needed chemo and my oncologist/surgeon called me on her day off and told me to come to the hospital immediately bc she couldn’t sleep. Also biopsy’s take 4-5 days to get back, my results were in 2 days afterwards. It’s so scary to think if one test result came in one day later where I would be now.
I hope that risk stays reduced! It’s so scary how things can change overnight
Well I had that neurofibroma since birth, it's pea sized and on the lowest point of the spine luckily non-plexiform cannot become MPNST. Sporadic MPNST is rare so it reduced chances. For me even though I have no signs of cancer and pretty mild NF1 I am still scared of getting it, it even made watching Breaking Bad a bit uncomfortable tho I still did enjoy it. 😂
I had a GIST (gastrointestinal stromal tumor) in October that was attached to my small intestine.
It was originally identified as an ovarian mass, but when the surgeon opened me up..plot twist.
Now as part as my regular oncology care, a recent scan (March 2024) found another one growing in my mesentery wall.
I had my first colonoscopy in January, and that came back totally clean, and that doc mentioned GISTs are common in people with NF.
Well all cancers are more common. 20% by age of 30 and 30% by age of 50 and 67% by 85 are chances. (In men) in women it's about 10% higher due to breast cancer.
I'm male tho so breast cancer isn't an issue in my personal case.
Not really. Less common than women of course, but more common than men realize.
Enough males with NF should consider learning how to do a self breast exam and do so periodically. Get to know what feels normal and what doesn't
From what I've been told it's some. Skin cancer, breast cancer, cancerous brain tumors, ovarian, MPNST, colon cancer and some other soft tissue cancer and leukemia.
Omg. My doctor NEVER told me about MPNST, and now I'm really terrified
All brain tumors are treated the same, cancerous or benign. Doctors don't wait for pathology
I didn't say they are or are not treated the same. But people with NF are more likely to get gliomas and astrocytoma and the treatment after surgery is absolutely different than a normal nf brain tumor or non cancerous tumor. I have had a brain tumor mine was non cancerous they took it out and that was that. My dad had an astrocytoma and they removed it and he got chemo and radiation.
I'm just saying what I've been told by my daughter's neurologist and neuro oncologist when she was being treated for her optic gliomas. The idea of brain tumors is terrifying for many parents here, and double so when they see oncology
My husband's brain tumors weren't treated like they were cancerous, they were just monitored for 14 years until they eventually resolved.
10% of people with NF can get MPNST
My husband had one. They are agressive and grow quickly. It was the size of a football.
I'm terrified now. 10% is too mucho and my doctor only give me a craneal RM every 5 years
I was so shocked to find this out, why do they tell us we have normal life expectancy when MPNST only has a 6% survival rate at five years and 10% of us will get it? Our survival rates for it are probably lower too.
And taking reducing cancer measures, probably only reduces the initial chances. Only saying that since I’m guessing no research has been done on it yet. But I know exercising is a big one and helps with recovery. Like I was diagnosed with MPNST this January, removed not even 36 hours later. And my doctor said the only reason why I recovered so fast (I had 50% better ROM after surgery than baseline) was due to exercising
I hope you do well, I know MPNST is extremelly dangerous. Luckiky I checked a plexiform neurofibroma (neuroligist called it plexiform in 2009, I am 2003 born) now did an MRI and MRI said it's localized. So at least my risk of MPNST is reduced.
My MPNST grew over a golf ball size overnight. I didn’t have a bump the day before, and the next day there was a bump😂 thankfully I had a brain MRI the next day, so I was able to get my upper back/shoulder done as well. (Where tumor was). They said if they removed it a day later I would have needed chemo and my oncologist/surgeon called me on her day off and told me to come to the hospital immediately bc she couldn’t sleep. Also biopsy’s take 4-5 days to get back, my results were in 2 days afterwards. It’s so scary to think if one test result came in one day later where I would be now. I hope that risk stays reduced! It’s so scary how things can change overnight
Well I had that neurofibroma since birth, it's pea sized and on the lowest point of the spine luckily non-plexiform cannot become MPNST. Sporadic MPNST is rare so it reduced chances. For me even though I have no signs of cancer and pretty mild NF1 I am still scared of getting it, it even made watching Breaking Bad a bit uncomfortable tho I still did enjoy it. 😂
WAIT - is it on your L5? I just got a new neurofibroma down there
Yea about there since my birth, tho Id have to check MRI scan results too see of its exactly.
I had a GIST (gastrointestinal stromal tumor) in October that was attached to my small intestine. It was originally identified as an ovarian mass, but when the surgeon opened me up..plot twist. Now as part as my regular oncology care, a recent scan (March 2024) found another one growing in my mesentery wall. I had my first colonoscopy in January, and that came back totally clean, and that doc mentioned GISTs are common in people with NF.
I’m not sure if it’s all cancers but I know breast cancer specifically is more common.
Well all cancers are more common. 20% by age of 30 and 30% by age of 50 and 67% by 85 are chances. (In men) in women it's about 10% higher due to breast cancer. I'm male tho so breast cancer isn't an issue in my personal case.
Males can and do get breast cancer,NF or not. You are not immune
They can but it's rare.
Not really. Less common than women of course, but more common than men realize. Enough males with NF should consider learning how to do a self breast exam and do so periodically. Get to know what feels normal and what doesn't
Nf linked breast cancer doesn't effect men . The type of breast cancer linked to nf is hormonal based . That why we advised to be careful with hrt etc
This is just me, but I have NF1 and have had cancer 4 times One was a benign brain tumour, the other three was the same aggressive cancer relapsing.