• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Is breast cancer related to ME/CFS?

Boule de feu

Senior Member
Messages
1,118
Location
Ottawa, Canada
I need to know if others like me have been diagnosed with breast cancer or breast "anomalies".

A few months ago, I was about to have a biopsy to figure out what is wrong with my right breast. The surgeon decided to "wait a bit longer and see". I am going back today. I am very worried - he might have to cut - but can't wait to figure out what is going on.

Are there studies about breast cancer and CFS? Were you diagnosed with it?
 
Messages
35
Location
Western Australia
Not sure but my ex-partner (he was diagnosed with mild autism as a child, and I firmly believe I contracted ME/CFS off him) has a Sister who at 21 had a breast removed due to breast cancer.
 

BEG

Senior Member
Messages
1,032
Location
Southeast US
Hi Boule,

What did your mammogram show? The best thing I did for myself was to buy Dr. Loves's BREAST BOOK. It is the best resource guide for breast cancer and those anomalies. Good luck to you. Please let us know .
 

carolwxyz99

Senior Member
Messages
114
I need to know if others like me have been diagnosed with breast cancer or breast "anomalies".

A few months ago, I was about to have a biopsy to figure out what is wrong with my right breast. The surgeon decided to "wait a bit longer and see". I am going back today. I am very worried - he might have to cut - but can't wait to figure out what is going on.

Are there studies about breast cancer and CFS? Were you diagnosed with it?

I went down with breast cancer after having ME/CFS for about 16 years and I know a few others with ME who went down with it. I hope your appointments went OK.

I must say, though, if I ever had the choice of getting severe ME/CFS or estrogenic breast cancer I think I would go for the breast cancer, its not been as bad a journey as the ME/CFS when I was bedridden. One integrative doc I spoke to reckoned there was a slightly higher likelyhood of getting breast cancer if you have ME/CFS. He reckons cancer and CFS are sister illnesses and have quite a bit in common. I asked him if it was more common to get cancer when you are improving when you have ME/CFS and he thought so. He said its as though as you start improving and as your immune starts improving it gets a bit of a glitch in it. I was very surprised that integrative medicine docs use quite a few of the same supplements to treat both cancer and ME/CFS. I.e. mitochondrial treatments, detox with FIR, probiotics, glutathione, immune support, ozone, vit C, MMS, AHCC, fish oils, treating infections such as parasites.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
This is something i have just started to think about, as i noticed other women on here talking about it. I have had M.E for 15 years with a long remmission in the middle. I have been investigated twice for breast lumps and both time they were cysts. Now i have found another lump and my GP wants to refer me for further investigation, i will have to wait about 6 weeks for an appointment at the breast care clinic. She thinks it might be o.k, but she also found a lump in my other breast, which i hadnt noticed. My Aunt on my Mothers side died of breast cancer in her 30's. I have always had problems with my hormones, since i was a teenager. i am a bit worried about it all now.
 

glenp

"and this too shall pass"
Messages
776
Location
Vancouver Canada suburbs
Genetic

Some breast and ovarian cancers can be genetic. If it is in your family you can ask for the genetic testing. This has nothing to do with CFS/ME but thought I would mention it for those with family members that have breast or ovarian cancer

My recent breast lumps were calcifications which were watched - and they eventually disappeared

glen
 

Daffodil

Senior Member
Messages
5,875
i believe XMRV/MLV's will be found to be linked to breast cancer. dr. demeirleir said that when he was in med school, breast cancer in the 30's was considered very very rare but now it is not uncommon. he has had CFS patients who went on to develop breast cancer. also, XMRV/MLV seem to reproduce more in reproductive organs, if i am not mistaken. i am sure these viruses will also be found to contribute to ovarian cancer and others.

perhaps treating the virus can help prevent the cancers? i sure hope so.
 

aquariusgirl

Senior Member
Messages
1,732
daffodil... yeah, that struck me immediately when I read it.. the connection v. xmrv and sex organs.

Lots of cancer in my mom's family... mostly breast, cervical, prostate.

I mentioned this to Judy M and she said she would put me in a study group where they are looking at connections v. xmrv and cancer.

Still waiting to be tested by WPI as part of any trials..etc..
 

Daffodil

Senior Member
Messages
5,875
aquarius..i am really sorry to hear about so much cancer in your family. i actually have no cancer in my family but i do have mental illness. i think i am probably the first one in the family to get XMRV/MVL but who knows...
 

Sing

Senior Member
Messages
1,782
Location
New England
A Low Incidence of Breast Cancer Seen With ME

Reading in the one text book on our illness, The Clinical and Scientific Basis for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, published in 1991, both Dr. John Richardson of Newcastle on Tyne, England, who had been seeing ME/CFS patients for 37 years, and Dr. Byron Hyde of Ottawa, Canada, noted an unusual decrease in the expected fining of breast carcinoma in ME vs the non-ME patient group. In Dr. Richardson's experience, he had seen only one such case in 37 years of practice.

This was one of the highlights I found in reading this book!

Sing
 

Sing

Senior Member
Messages
1,782
Location
New England
Yeah, some of our down-regulated elements serve us (as do some of the up-regulated ones sometimes). I know I have been scraping bottom on my estrogen level for years.
 

carolwxyz99

Senior Member
Messages
114
This is something i have just started to think about, as i noticed other women on here talking about it. I have had M.E for 15 years with a long remmission in the middle. I have been investigated twice for breast lumps and both time they were cysts. Now i have found another lump and my GP wants to refer me for further investigation, i will have to wait about 6 weeks for an appointment at the breast care clinic. She thinks it might be o.k, but she also found a lump in my other breast, which i hadnt noticed. My Aunt on my Mothers side died of breast cancer in her 30's. I have always had problems with my hormones, since i was a teenager. i am a bit worried about it all now.

Good luck with the results. Just remember that most breast lumps are not carcinogenic. It is possible to get tested on the NHS in the UK to see if you are likely to get the genetic type of breast cancer.
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
I've had ME/CFS for almost 30 years and now suspect that it began even earlier. For a long time I was the only one of eight children who was ill. Now my older sister has ME/CFS, my youngest sister had uterine fibroids that got quite large, and then my middle sister got an aggressive form of breast cancer. These two younger sisters are otherwise healthy. My father also had prostate cancer that recurred after treatment. I can't help but wonder if these are all related.

I had a lot of breast cysts before menopause. In addition to mammograms, I had to have sonograms. Most of the time they aspirated the lumps. If fluid comes out, they don't worry about cancer. Near the end, I started aspirating them myself. What!?! I was too tired to go see the GP so that he could refer me to a surgeon. Two exhausting appointments for what took me a couple of minutes. Really, there is no need to aspirate, but they were uncomfortable and made it impossible to tell if I had lumps that I needed to be concerned about.

My feeling, though not supported by any evidence, is that my having ME/CFS is preventing me from getting breast cancer. I did get melanoma years ago and was fortunate that it was caught early. I have heard of women with ME/CFS getting breast cancer but it doesn't seem that common. I could be very wrong, though.

I am XMRV+.
 
Messages
35
Location
Western Australia
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.
 

aquariusgirl

Senior Member
Messages
1,732
I'm thinking that our inability to make new RNA/DNA may be our hedge here since cancer involves rapid growth of cells....
maybe that ties into why PWC get sick when they recover..
I think the latter point was made earlier in this thread.. but if not I've seen that point made over and over.
 

carolwxyz99

Senior Member
Messages
114
I had a lot of breast cysts before menopause. In addition to mammograms, I had to have sonograms. Most of the time they aspirated the lumps. If fluid comes out, they don't worry about cancer. Near the end, I started aspirating them myself. What!?! I was too tired to go see the GP so that he could refer me to a surgeon. Two exhausting appointments for what took me a couple of minutes. Really, there is no need to aspirate, but they were uncomfortable and made it impossible to tell if I had lumps that I needed to be concerned about.
I have had lots of breast cysts too, but apparently there is no relation to having cysts and breast cancer. At one time they used to aspirate them, but over the last 2-3 years they have been reluctant to unless they are very big.

At one time they put me on a "cyst protocol" so I could go straight up to get the cysts ultrasounded and seen to rather than having to have consultations first. The difference between my breast cancer lump and the cysts is that cysts have tended to be mobile and round or ovalshape. They also show up differently on ultrasound. My breast cancer lump was not uniform and not mobile - it was variable in shape and it had a bit of a ridge above the centre of my boob. I also had generally lumpy boobs and it just felt like a normal lumpy bit for a year or two. When ultrasounded it was shown to be full of cysts, so noone bothered to biopsy it, but then I did not see a consultant about it, just the person operating the ultrasound (for a different cyst), which is why it may have been missed. However, fortunately for me although the lump was large, it was only a grade 2 (most are grade 3) and there was nothing in the lymph nodes and it was the estrogenic type.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
I am off to the hospital to have my lump looked at tommorrow. Going to have a 3d mammogram, not looking forward to it at all, but i will get the results straight away, as i have an appointment with the consultant straight after. This is good because the hospital is over an hour away from where i live. I have decided to just go prepared so am going to take a low dose valium, a pillow, a blanket and a packed lunch. I havent gone out for that long a trip in over a year so a bit apprehensive about it. Hope i get some sleep tonight!