Long term risks of cancer treatment

A recent study revealed that most of the survivors of childhood cancers, end up with life long health problems. I find this a bit scary. It shows that cancer treatment can cause long term health issues. Yes what was standard treatment up to 48 years ago, the length of time from the longest survivor's treatment, certainly is not standard today.

Cancer treatment has been likened to a slash and burn. Cut out what can be found and then burn it with radiation and then go after it systemically with chemotherapy. It must leave long term issues as it is such a harsh system of treatment.

But how are we going to be in 40 years? Will our cancer treatments impact our potential longevity? But what about those of us who have had cancer treatments? Because we survived treatment are we then putting our future health at risk? What didn't kill us, may not have made us stronger but the treatment may kill us in the end.

Perhaps more research is needed.

Lets redefine cancer

The question has arisen as to how to redefine cancer. A scientific panel states we are using a 19th century definition in the 21st century. The issue is should some precancerous conditions be redefined with out the use of the words cancer or carcinoma.

"In one example, they say that some premalignant conditions, such as one that affects the breast called ductal carcinoma in situ — which many doctors agree is not cancer — should be renamed to exclude the word carcinoma.

That way, patients are less frightened and less likely to seek what may be unneeded and potentially harmful treatments that can include the surgical removal of the breast.

The group, which includes some of the top scientists in cancer research, also suggested that many lesions detected during breast, prostate, thyroid, lung, and other cancer screenings should not be called cancer at all but instead should be reclassified as IDLE conditions, which stands for “indolent lesions of epithelial origin.”

Although it is clear that some or all of the changes may not happen for years, and that some cancer experts will profoundly disagree, the report from such a prominent group with the clear backing of the National Cancer Institute intensifies and broadens the debate and will probably change the national conversation about cancer, its definition, its treatment, and future research.

“We need a 21st-century definition of cancer instead of a 19th-century definition of cancer, which is what we’ve been using,” said Dr. Otis W. Brawley, the chief medical officer for the American Cancer Society, who was not directly involved in the report.

The impetus behind the call for change is a growing concern among doctors, scientists, and advocates for patients that hundreds of thousands of men and women are undergoing needless and sometimes disfiguring and harmful treatments for premalignant and cancerous lesions that grow so slowly they are unlikely to ever cause harm.
The advent of highly sensitive screening technology in recent years has increased the likelihood of finding these incidentalomas — the name given to incidental findings detected during medical scans that most likely would never cause a problem.
However, once doctors and patients are aware a lesion exists, they typically feel compelled to biopsy, treat, and remove it, often at great physical and psychological pain and risk to the patient."

So is it cancer or not? Or is an incidentaloma?

I think there is some validity to the argument. Medical science has advanced to the extent that a precancerous diagnosis usually is not a deadly diagnosis any more. The conditions can usually be treated and the patient may require additional follow up in the future but can assume they will live a long and healthy life.

I am not trying to minimize the importance of diagnosis and treatment of any of these conditions. But perhaps its time for the words to change.

Privacy

Somehow a change has happened. All of a sudden, I have many fewer doctor appointments. I saw my rheumatologist a couple of weeks ago. I see my therapist in mid August and then nothing until October when I see my rheumatologist and dermatologist.

How did that happen? When I get my appointment list from the hospital, it goes through next July and has an empty space on it. It maxes out at 10 appointments so I have less than ten scheduled. I do know a couple are missing.

My endocrinologist and my surgeon follow ups should happen in January and May respectively are not yet on the list. For some reason, those departments don't schedule until less than three months out. I also know I need to schedule a follow up with my back pain doctor for late fall sometime as well. And I have to go in for blood work every two months as well. I have dentist appointments too but they aren't the same.

I do know a few of my doctors have switched me to annual follow ups instead of six months. That helps. I don't know what happened to all my other appointments. I really don't mind NOT going to the doctor. In fact I will enjoy it.

One aspect I will really enjoy is not having my body examined again and again. I do not need to be poked and prodded, have my vitals and weight checked again and again. I am fine.

I do feel like I am regaining a sense of privacy in hot being examined so extensively and frequently. Its my body and I am entitled to some privacy about it. I have missed that.

Rich pharma companies, poor patients.

Pharmaceutical companies are getting rich on the backs of their patients. Don't believe me? Here's some proof.

First we have an article from New Jersey on how Roche's profits are up 10% and its revenues are up 4% on profits from its breast cancer drugs. The company is now focusing on cancer drugs and hopes to find more high profit drugs as generics come available for drugs such as Herceptin.  By the way, their cancer drugs cost between $70,000 and $100,000+ annually per patient.

If you ask a pharma company you get the standard lines: 'no one pays those prices', 'they are covered by insurance', 'we do have programs for those who are uninsured to help with the costs'.

But my point is why are they pricing them so high in the first place? List prices do not reflect costs, they usually reflect positioning. A price tag of $90,000/year reflects exclusivity. 'It must be good if it costs so much.'

Do you see the problem here? As other pharmaceutical companies, Roche is supposedly pricing its drugs so high to compensate for their high research and development costs. But look how profitable they are. This is a graph of their 2012 sales from their website:

And then here are are the sales from individual products:

(These numbers are in billions (with a b, not an m) Swiss francs which are currently worth $0.93.) Paltry profits of $16 billion on sales of $44 billion? That's pretty damn profitable if you ask me. Mabthera is an RA drug, Herceptin, Tarceva, Avastin, Xeloda are for cancer, Pegasys for Hepatitis C, and Lucentis is a diabetes drug.)

Also of note is the fact that Roche has negotiated with other countries to slash prices of the drugs there - I found examples in South Africa, India, and European countries. So the other countries - read the 'rich' US - gets to pay the big bucks? How not fair!

I'm sorry but I don't feel sorry for the pharmaceutical industry and how their research costs cause them to price drugs so high. But if their profits are so high and their employees are paid so highly, why are the patients bearing the brunt of the costs?

[I will note here that I am not targeting Roche for any reason. I came across the article from NJ.com on their profits in cancer drugs which I read and then did a little more research. I could probably write a similar article on other large pharma companies as well.]

Can we undo my surgery please?

When I had my breast cancer surgery the sentinel node was tested and came back with microscopic traces of cancer. It was then deemed necessary to have an Axillary Node Dissection where they take out a lot of lymph nodes in your arm pit to see the possibilities that the cancer has spread further in your body. Mine came back negative. But the damage was done.

When that many lymph nodes (20 in my case) are taken, the lymph system in your arm in permanently compromised and the risk of lymphedema is greatly increased. That would be my problem.

Now there is a new study (because the researchers needed to keep working), that says that if the sentinel node is positive, the better outcome for a patient is to have axillary node radiation instead of an axillary node dissection. There appears to be the same or lower risk of recurrence and the risk of lymphedema is substantially reduced.

This is clearly in the category of now they tell me. Damn. I have lymphedema which complicates my life - and has no cure.

I guess this is what research is all about - figuring out how to improve treatment so that they can prevent complications and reduce risks from previous treatment standards.

Winter weather in summer

Part of having RA and fibromyalgia is adapting to cold weather. Why am I blogging about this in July? Because here in Boston in July its a tropical 66 degrees. Yesterday's high was 69 with heavy rain. Today it might hit that same temperature again with more rain, mist, and clouds today.

How does this feel? Achy, sore, creaky, tired. Its July, its summertime. I'm supposed to be feeling better because its a nicer time of year. But between being off methotrexate and the 'tropical' weather, I am borderline cranky.

It is complicated

When diagnosed with a new ailment, I try to educate myself on what it is, what to expect, and how it works as much as I can. I don't go to medical school or anything but I do a lot of reading,  listening and asking questions.

I think I feel more comfortable with ailments when I understand them and can comprehend how they are affecting my body and my well being. Its helpful to me to know what is common vs what is unexpected and requires further attention.

At my RA diagnosis, I thought I knew a fair amount about it because my mother has had it for decades. But apparently I did not. It has been a learning curve. I finally thought, 8 months after diagnosis, that I was getting some where.

Then yesterday a friend sent me a link to a series of two articles in the New York Times which are questions answered by a rheumatologist on RA and its treatment. Then I found out how much more I didn't know. I read the comments at the end and found there is still even more I need to know about.

You can call me slow but I probably have decades where I can continue to learn about it even more.

If you want to educate your self on RA, here are parts one and two.