New Breast Cancer Guidelines

The St Gallen International Breast Cancer Guidelines were recently updated to include the Oncotype DX test for breast cancer as the only screening tool for women with early stage ER+/Her2- breast cancer to determine the benefit of chemotherapy.

On some levels this is great news but again it is not for all women. The criteria for the Oncotype DX test for breast cancer are:

"You may be a candidate for the Oncotype DX breast cancer test if you are medically eligible for chemotherapy and:

• You have been diagnosed with stage I,II or IIIa invasive breast cancer.*
• Your breast cancer is estrogen-receptor positive (ER+) and Human Epidermal growth factor Receptor -negative (HER2-) and you do not have lymph node involvement (also known as lymph-node-negative breast cancer).

        OR

• You are a post-menopausal woman recently diagnosed with node positive, hormone-receptor-positive, Human Epidermal growth factor Receptor -negative breast cancer"

The problem is that while most women have ER+, Her2- and node negative breast cancer, not all do. For example, I was not given this test because I had one tiny positive lymph node. Apparently they are starting to do some testing on women with node positive disease. The Oncotype DX test is also available for colon and prostate cancer as well.

I have digressed. I do like the fact that this test is available for some if not all. I do like the fact that it is covered by most insurance companies. I do like the fact that it helps determine if a patient will benefit from chemotherapy before they receive it. I do like the fact that it is part of standards for treatment.

I do not like the fact that it is still part of the conversation about treatment - do you remember the little analogy - an ounce of prevention is worth a pound of cure? Why can't we put that into the guidelines?

Time for a change

Through the past forty years, there have been changes in the way we view and treat breast cancer. It started with the 'lets cut out as much as we possibly can'. Radical mastectomies were carried out regularly, permanently disfiguring patients - both emotionally and physically. And leaving them with life long health problems of lymphedema and more.

Gradually, times changed and focused more on detection with the advent of mammograms. My original cancer book printed about 1980, says that they were just beginning to recommend regular mammograms as screening for breast cancer. After this the Komen foundation began to promote early screening which some how devolved into the pink ribbons, pinkification, sisterhood and giant pink wave that overtakes the world every October.

The Komen foundation has managed to give themselves several black eyes in recent years which are proving their downfall. However their efforts, along with that of many other,  have greatly helped destigmatize the disease, allowing people to shout the word cancer instead of whisper it in corners.

But as Karuna Jagger, (www.twitter.com/karunajagger) Executive Director of Breast Cancer Action, points out, its time for a change from this pink world to one where we focus on what is really important:

"As the nation's attention focuses on breast cancer during Pinktober, let's stop selling women a false narrative about screening, and instead advocate for more effective treatments, less treatment when possible, and fewer breast cancer diagnoses in the first place. It's time we change the breast cancer narrative once again."

We do not need all the pink to focus on these efforts.

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.

Breast cancer risk reduction

There is a new trend in women who are deemed to be  at high risk for breast cancer to have a prophylactic bilateral mastectomy. A mastectomy is not minor surgery and comes with its own set of risks. Women who then want reconstruction can be faced with months of additional surgery as well as the issue of implant replacement later in life. Other side effects can linger such as lymphedema for a lifetime.

A new government task force (who is spending our money on these things) announced that high risk women should consider taking either tamoxifen or raloxifene to reduce their risk. While the drugs carry their own risks, they also can be stopped. A mastectomy is irreversible.

I realize this is a very personal decision and emotions can rule the decision making process. Perhaps this study will help women not make such a drastic step.

I get so confused on all this progress business

I saw this video and thought 'wow this is great news, more progress in treating late stage breast cancer'. Then I started thinking, did I see a different article on this new drug before or is a new one that I hadn't seen before. I get so confused.

I do think this is progress but I don't know if its 'new to me' so to speak or if I did blog about it previously. Well, either way its a nice story and its nice to see progress. But further testing is needed, its only available in clinical trials, and more trials may be required so it is still months or  years away from being available.

Are we overdoing it?

More women are opting for double mastectomies, even if they do not have cancer in both breasts. Here are the numbers:

"The rate for women choosing to remove both breasts when only one has cancer jumped from 6.7% in 1997 to 24% in 2005,..."

"About 70% of women in the United States who have both breasts removed after a cancer diagnosis don't have a proven medical reason for undergoing the procedure,..."

So why are we doing this? Lots of reasons:

• Implants have fewer problems than in the past.
• Plastic surgery has had many advances.
• We want it now mentality.
• The overly hyped awareness of breast cancer

If we look at these last two reasons, they may be the root of all the reasons. In the past decade or so, we have been accustomed to the instant gratification or instant problem solving. Amazon started bringing us our purchases overnight. Problems are more easily solved. We can find information instantly so we want to fix things instantly as well.

Pinkification has also caused more awareness and availability of information.

"A growing awareness of breast cancer survivorship makes undergoing mastectomy not as foreign or frightening as perhaps it once was. An online search shows a seemingly limitless number of breast cancer support groups, with a growing collection dedicated to women considering preventive surgery.

Dr. Mark Sultan, chief of the division of plastic and reconstructive surgery at St. Luke's/Roosevelt and Beth Israel Medical Centers in New York, said he's seen a 20% increase in five years of high-risk, yet cancer-free women coming to his office seeking mastectomies.

These patients often arrive telling him what kind of surgery they want because they've read about certain procedures online, and in many cases, they've viewed hundreds of before-and-after photos as well."

These are examples of how the world of medicine and being a patient is changing. But maybe we are overdoing it. A double mastectomy is not a minor surgery. I have heard of women being in surgery for 10 or 12 hours with multiple surgeons and months of recovery. Never mind the problems of lymphedema and other risks in the future. 

I think I would prefer to keep my body as intact as possible if I possibly can.

New Breast Cancer Drug but at What Cost

The FDA approved Kadcyla for late stage breast cancer treatment. This is a good thing. Its about time.  And it will save many women's lives.

But I have a real problem with the financials behind it. A month's treatment costs $9800 or $117,600 annually, which apparently is about twice the costs of Herceptin. These costs will mostly be covered by insurance - and we wonder why insurance premiums are going up.

Immunogen, who developed it, expects to receive a $10.5 million pay off plus royalties of 3-5% of the expected world wide sales of $2 billion (with a b). To my tiny math brain, that means they get $60,000,000 (that's 60 million if you are having problems with all the zeros).

It will be marketed by Genentech who I assume will take in the rest of the profit after coming up with snazzy packaging and fancy ads. I have no idea what Genetech's manufacturing and promotional costs will be but I am sure their profits will exceed that of Immunogen.

But that's okay because the insurance companies will probably cover most of it - which is why our medical costs keep increasing so rapidly.

Going back to when I blogged about pricing and how it is determined by marketing people, I am sure the whopping price tag was set by marketers (those evil people) who wanted it to be high end, represent a last chance for women to extend their lives, and if its expensive it must work really, really, really well.

But at least it is finally available for the women who need it who will gladly pay any price to extend their lives. Call me cynical, but maybe I am.

Keeping up with the Jones'

If all your friends jumped off a cliff, would you? The latest fashion in breast cancer treatment is to have a mastectomy, even bilateral, at the least sign of breast cancer. The celebrities are doing it, so why shouldn't everyone else?

Because it doesn't necessarily mean the patient will have a better outcome. So why do patients opt for a much more drastic option when there is a significantly easier option?

The answer seems to be fear of recurrence. The professional reply is that 'No doubt, oncologists could do a better job calming women’s fears and educating them on the long and painful recuperation period involved with breast reconstruction following a mastectomy.'

Not so fast. I know many women who have gone through a breast cancer diagnosis who take time to think and make a rational decision that they really want two things:

1. Cancer out of their bodies
2. Not have to have such intense monitoring for the rest of their lives.

I do know some women who have not made as deep a thought process (like me) and did what the doctor advised. But many others have had a bilateral mastectomy for the peace of mind. Its not keeping up with the latest fashion.

More cliff news

Finally I caught up with my oncologist yesterday. She could still barely talk after being out with the flu but I had called after I waited nearly a week. I saw her nurse practitioner on Monday and called after lunch on Friday. I thought that was long enough to leave me dangling on the Femara cliff.

Last August when I saw her, she was all set to take me off Femara at this visit. We talked about it so I could emotionally prepare for the cliff of the end of breast cancer treatment. I did stress over it, think about it, whine about it, and otherwise cope maturely.

When I went to my appointment on Monday she was out with the stomach flu so I saw one of her nurse practitioners who indicated there is new research so maybe I wouldn't be going off Femara right away (despite my stress, whining, and thinking). And that is the case.

There is new research in the past month or two that says that more might be better in terms of breast cancer treatment. It has been thought that ten  years of Tamoxifen might be better than five for premenopausal women. Now it is thought that up to ten years of Femara might be better for postmenopausal women. And for people like me who had over two years of Tamoxifen and switched, originally aiming for a total of five years of hormonal treatment, it is thought that five years of Femara plus the two plus years of Tamoxifen is better.

So now here is the new plan. I will continue on Femara for up to two and one-half more years based on how my bones/osteoporosis are doing for a total of five years on it if possible. We will assess after each annual bone density test in May. I can also be treated for osteoporosis while on Femara so that is an option as well.

I am a high risk for osteoporosis due to a strong family history, synthetic thyroid hormone is also hard on your bones, and Femara is really hard on your bones. Combined with all that, I had osteopenia (precursor to osteoporosis) before I started all this breast cancer crap (and crap it is).

This has been the story of my cancer treatment - I am always the 'different' case - because of your medical history we need to be sure. Triple grr.

Damn the new research and the stupid moving cliff.