Cancer and ALS

[Marilyn2014]

I have read past postings on this forum about those who have had cancer and then were diagnosed with ALS. This is exactly what happened to my mother. She had breast cancer, then a mastectomy, chemo, and then radiation. She was cancer free after it all except that after a dose of chemo that was too high, she immediately went weak on her left side. After that her body just kept getting weaker and weaker. She was diagnosed with ALS this past Sept and it has progressed very quickly. She likely has until the early spring. We will never know why but my family and I have a hunch that there is a link between cancer and/or chemo and ALS. I don't think I am alone on this one.

Its the lack of attention to further examine this connection through research that upsets me as well as not having many answers as to WHY?
Apparently, the research states that it is not statistically significant that there is a link between cancer and ALS but I think there are more people out there that have had cancer and ALS than is being documented. I smell something very fishy. . .

 

[zoohouse]

Trends in cancer rates
Cancer is a disease that mostly affects Canadians aged 50 and older, but it can occur at any age.

Across Canada, cancer incidence rates vary because of differences in the type of population, risk factors (including risk behaviours) and early detection practices. Similarly, rates of cancer death vary because cancer screening rates and the availability and use of treatment vary across the country.
Chances (probability) of developing or dying from cancer
Based on 2007 estimates:
2 out of 5 Canadians (46% of men and 41% of women) are expected to develop cancer during their lifetimes.

So I would be surprised not to see cancer in as many ALS patients. There are many chemotherapies that are extremely neurotoxic, so it is not inconceivable that it could kick start ALS in a person who may be prone to it. But the choice is go without chemo and take the chance that there may be some random seed cancer following surgery that may metastasize to another area, and in breast cancer that is usually the brain, or take the chemo with the risks and possible cure.

I am so sorry that your mother has been hit twice with two very terrible diseases.
Paulette

 

[affected]

So sorry to hear of the hard time your mother has had battling 2 awful diseases.

For the record my husband has never had cancer, he was an incredible healthy person before and since ALS. (he often says I've never been so healthy and so sick at the same time) He had been so healthy in fact, he did not know his blood type, had never had a needle draw blood from him before, had never been admitted to a hospital in his life and was a very active, motivated, outdoors person.

I've actually heard from many people on this and other forums a similar story - their PALS were very healthy, active people, then wham ... ALS.

It is very frustrating that they still know so little about ALS, but there are more than 70 different large research projects around the world investigating ALS in many different ways and the past few years in particular with developments in genetics, they are make more and more discoveries and piecing more and more bits of the puzzle together. They are only human and this disease does indeed seem to be an extremely complex bug ger to pin down.

May I ask, did someone tell you that your mother has until early spring?

 

[Barbie]

Cancer is very common unfortunately, and ALS is very rare. So it doesn't make sense to me to try to link the two illness--if cancer causes ALS, there would be a very high rate of ALS. and not every ALS patient has had cancer. (my husband for one). More than likely, she was just terribly unlucky--and developed ALS after fighting cancer. I could believe that the weakened state of her body could make the ALS come on quicker, but not cause it. many people feel that their symptoms become noticeable after a surgery or illness.


I think it has been said before on another thread that we as loving humans try hard to make sense of the unfathomable and it just isn't always possible.

 

[Marilyn2014]

Thank you Paulette. You captured very well what I was getting at. My mother has had a bout of bad luck. She had a rare kind of breast cancer as well as a rare kind of ovarian cancer that I did not mention in my original posting. So maybe she was predisposed for a series of illnesses or like you said the chemo treatment could have kickstarted the ALS. So many unknowns. She did consider the option of not having chemo but wanted to take the chance and get all the treatment that was available. Thank you for your post.

Tillie, I'm sorry to hear about your husband. The interesting thing about his disease, like cancer, is that it strikes people who are healthy as well as those who are not. I'm just so angry that this has happened to our family and its frustrating when you don't have the answers you would like. I'm happy to hear that there are over 70 worldwide research projects hope and I hope they can pin this bugger down.

Also, it was my mother who told me that she has till spring. I don't mind that you asked this. She knows what she is talking about as she was a nursing instructor for 35 years so I believe her. She's has an incredible attitude about it, remaining positive and focusing on the present. She is incredibly strong and I can only aspire to be like her.

 

[affected]

Thanks for your reply Marilyn.

We sure do all go through a lot of anger in different ways as this disease takes its toll on us.

I appreciate your answer, and I believe that people often do know more about what is happening with their own bodies than anyone else. I asked as I don't like that some doc tors will tell people they have some period of time left when they don't really know at all.

I'm so glad to hear how well she is coping and her attitude, that is such a blessing.

Sadly my husband also has some ftd involvement, so he is not the man he once was, and that is way harder for me to cope with than the physical deterioration.

I am sure you will find this place a great support, we do all understand.

 

[FSHolbrook]

I am not sure that cancer is the culprit in causing als but, radiation and chemo may play apart. We know that there are genetic mutations that have been identified in als patients. There is a school of thought that the immune system may be involved. So much to learn and so little time.

Rick

 

[Eacz60]

I had breast cancer at age 41 in 2002 with 6 mths of chemo and a mastectomy. Had another preventative mastectomy in 2012 due to precancerous lesions. I can't prove it but I think the chemo triggered the ALS. I don't think it's just a case of bad luck. I believe we are born with 'mutant genes/cells' and something triggers them to go awry.

There is no history of ALS in my family but there is for BC. However, genetic testing did not show that I carry the known BC gene. So much science and yet so many unknowns. Cancer has received much more medical research than ALS and the advancements are based on early detection and treatment. Cause, cure and prevention are still a mystery. Right now I'd be happier if there was a Treatment for ALS.

 

[MaxEidswick]

> I think the chemo triggered the ALS

that makes sense to me -- last weekend, we attended an MDA event in Houston where Dr. Lay gave a talk which included mentioning 'triggers' for ALS including stress, one reason the VA believes there are 2x incidents of ALS among vets.