Is breast cancer related to ME/CFS?

[justy]

Thanks Carol - spent all day at the hospital - given the all clear. I am so relieved, i am fed up with hospitals and being poked around. The people there where lovely though, and the doctor very nice.
Have experienced my first mammogram now, and to be honest it wasnt that bad at all.
Thank you for your concern.

 

[carolwxyz99]

Glad it went OK Justy.

I suppose having a mammogram is not that bad but I find the easiest way to describe having them is that its like having your boobs put in an apple press!! But I think it depends on the radiographer. One of them clamped my boob in and then raised the machine up too high which almost left me hanging in the air from my boob - I was on tiptoes, then she said don't move - I think that would have been impossible!!! At least I don't find they affect my ME.

 

[Mya Symons]

I am going in for another mammogram scan soon because of an abnormality found on my original scan. I'm 45 and this is the third time something has been found. The first two times ended up being cysts. This time the doctor says I have a large mass on my left breast. I'm a bit worried. I'm wondering also if there is a connection between breast cysts or breast cancer and ME. It seems like a lot of females with ME get ovarian and breast cysts. I'm wondering why that is.

I also wonder if cancer rates in general are higher with people who have ME. If we have higher levels of oxidative stress than the average person, it would make sense that we have higher rates of cancer.

 

[Sing]

I hope you are okay, Mya, and don't turn out to have cancer! My understtanding from talking to the former head of MEFMACTION in Canada is that the incidence of breast cancer for those with ME is considerably lower. From other sources as well as my own condition, I have noted that hormone levels are generally low if not subnormal in those with ME. This can result in other problems like more cysts, fibroids and other oddities, but not so much of the hormone-fueled cancers. There will need to be a b ig study to establish the facts! As of now, we just hear about the experience of our fellows or those with much experience in the field, which count as "anecdotal" evidence, but don't yet have the big picture.

Let us know how things turn out for you!

 

[Mya Symons]

I hope you are okay, Mya, and don't turn out to have cancer! My understtanding from talking to the former head of MEFMACTION in Canada is that the incidence of breast cancer for those with ME is considerably lower. From other sources as well as my own condition, I have noted that hormone levels are generally low if not subnormal in those with ME. This can result in other problems like more cysts, fibroids and other oddities, but not so much of the hormone-fueled cancers. There will need to be a b ig study to establish the facts! As of now, we just hear about the experience of our fellows or those with much experience in the field, which count as "anecdotal" evidence, but don't yet have the big picture.

Let us know how things turn out for you!

Thanks for the information. It's good to know right now and it makes sense. I have been told before that I am low on hormones. I think it IS just cysts again. Last time it was a big cluster of cysts like a small cluster of grapes. It looked like a mass that time also. I wish they would hurry up the process so I could find out instead of worry.

 

[Sing]

I had a painful lump in one breast that turned out to be just a cyst. Used to have lumpier breasts before. Also used to have a lot of uterine fibroids and abnormal bleeding which my Gyn believed must have been from a malignancy since they were occurring post menopause in a very low hormone environment. But--no malignancy, just abnormal or unusual symptoms from ME/CFS, as far as I understand. This doctor frightened me though and nearly talked me into a big operation, a hysterectomy, which in itself would have knocked me down for the count. Fortunately I avoided this surgery, but some years later, decided on hip replacement surgery for some painful arthritis and my body has never recovered from the impact of the surgery. Orthostatic intolerance, then neuropathy, got so much worse after that. Medical procedures that healthier people can take in stride can become one way tickets into trouble for those with a chronic illness, especially one not understood by the medical world. Personally I would refuse almost any surgery or aversive drug or other treatment no matter what happens to me medically, based on what I have experienced.

 

[Mya Symons]

I had a painful lump in one breast that turned out to be just a cyst. Used to have lumpier breasts before. Also used to have a lot of uterine fibroids and abnormal bleeding which my Gyn believed must have been from a malignancy since they were occurring post menopause in a very low hormone environment. But--no malignancy, just abnormal or unusual symptoms from ME/CFS, as far as I understand. This doctor frightened me though and nearly talked me into a big operation, a hysterectomy, which in itself would have knocked me down for the count. Fortunately I avoided this surgery, but some years later, decided on hip replacement surgery for some painful arthritis and my body has never recovered from the impact of the surgery. Orthostatic intolerance, then neuropathy, got so much worse after that. Medical procedures that healthier people can take in stride can become one way tickets into trouble for those with a chronic illness, especially one not understood by the medical world. Personally I would refuse almost any surgery or aversive drug or other treatment no matter what happens to me medically, based on what I have experienced.

I know what you mean. After my hysterectomy I ended up in the hospital for a month with a post-op infection. I am very scared now of any serious surgery or procedure.

 

[Sing]

That sounds terrible, Mya! I would like us on these forums to spread the word and investigate on this general subject--namely, bad reactions and complications as a result of surgeries and other medical treatments. Since most doctors are ignorant of ME/CFS, they won't know to be very conservative about surgeries, treatments and often medications for us.

 

[wastwater]

Breast cancer features in my family history,unfortunately

 

[Starfive]

Thanks so much for sharing your experiences. I just had a ct scan and they found a mass on left breast. Mammogram is on Monday. Since I did not think about cysts or other anomalies I can now think in broader terms. Pain meds could have covered up any pain in my breast. My lymph nodes get sharp pain at times or aching but coming and going not like my legs which is 24/7 of excruciating burning and stiffness.

 

[Hutan]

Best wishes @Starfive

 

[bertiedog]

Good luck @STAR I hope everything turns out well for you, it must be very worrying for you at the moment.

Pam

 

[daisybell]

Wondering if anyone knows of any more up-to-date info re ME and incidence of cysts etc?
Just back from urgent mammogram and ultrasound - I have two large cysts and lots of small ones...I joked to my husband that I would be back to an A cup if they weren't there!
Anyway, thoroughly relieved - and having the sore cyst aspirated next week...

 

[RogerBlack]

I remember reading a comment by Dr Cheney somewhere. He noted that in XMRV positive families, those family members that were XMRV positive but appeared "healthy" had an increased incidence of cancer. Whilst those family members that have ME/CFS had a lower incidence.

Nobody has ever tested positive for XMRV with a test that stood up.
It was a virus circulating around lab cultures, accidentally generated in a lab.

I guess without further investigation this would work as CFS versus controls though.

Good luck and best wishes to all those in this position.