I Am Very Confused

I realize this must be part of the vast conspiracy to keep breast cancer patients confused. Nancy, over at Nancy's Point, blogged about the AJCC’s Updates to the Breast Cancer Staging System, asking if we are confused about it. Well, since I didn't know about the updates (or even who the AJCC is) I was and still am very confused.

Let's start with the AJCC or the American Joint Committee on Cancer. Apparently they are the people who set up cancer staging criteria. They set the original TNM staging system in 1959. TNM means Tumor size, Nodes positive, and Metastases. 

"The panel recognized the need to incorporate biologic factors, such as tumor grade, proliferation rate, estrogen and progesterone receptor expression, human epidermal growth factor 2 (HER2) expression, and gene expression prognostic panels into the staging system. AJCC levels of evidence and guidelines for all tumor types were followed as much as possible. The panel felt that, to maintain worldwide value, the tumor staging system should remain based on TNM anatomic factors. However, the recognition of the prognostic influence of grade, hormone receptor expression, and HER2 amplification mandated their inclusion into the staging system."

I used to know what stage I am - IIA. Now I can't figure it out. With all this other stuff included. I am very confused. I looked at the American Cancer Society's website for help. And I am even more confused. There is no more little chart that shows what you stage you are. 

So here is my game plan: I will ignore all this new information until I meet with my oncologist sometime next summer and ask her. I feel this is better for more. A little ignorance and confusion will go a long way in reducing my stress. 

Now all of us breast cancer people can have these little conversations:

'What stage are you?'

'IIa, I think.'

'Is that the old staging or the new staging?'

'What new staging?'

'You didn't hear about it?'

'No.' 

All the breast cancer staging changed in 2018. They added all sorts of new information, grade, hormone status, etc'

'Oh, so if I was stage IIb, do you know what new stage I am?'

'No, I don't even know what stage I am. I can't figure  it out. I'm going to ask my oncologist.'

'Crap, let me call my oncologist too.'

But I swear there is a vast conspiracy out there to keep us all confused.

Stage 0 thoughts

I like to think of a stage 0 cancer as a dodged bullet. My husband is a stage 0 cancer person. He had a malignant polyp removed from his colon a few years back.

Yesterday, he had a colonoscopy (which went just fine, thanks for asking) and the nurse in charge of his prep, walked up to him and said 'you had colon cancer?' I almost replied no for him but kept my mouth zipped as he was the patient.. He said yes as he had his evil polyp.

I was kind of jolted by the question about him having cancer. It was a bit of a surprise. But yes I do agree it was cancer. I think any kind of cancer sucks. But stage 0 cancer treatment is usually just a small surgery of some sort to remove the diseased area.

There is some discussion on DCIS if it is over treated - does it really require surgery? Is it over treated? According to the latest figures from the ACS, they expect 60,000 out of 240,000 cases of breast cancer diagnosed in 2015 will be stage 0 or DCIS. That's 25% of all cases. So if screening keeps us from finding cancers before they have progressed, more power to them.

My thought is if its a cancer, take it out to preventing from it eventually causing the death of the patient.And maybe I am just hyper focused on all my ailments and don't think about his as much.

Cancer staging - take two

When I was diagnosed with breast cancer in 2007, I was overly concerned about staging. We all were. 'What stage were you? How long has it been?" we carefully asked each other and compared notes. We introduced ourselves to each other and whispered "what stage are you?" and "how do you feel?".

[There is more on my staging here. If you want a basic overview of how they get to staging read this or go to cancer.org and look up your type of cancer.]

Now I will talk about reading between the lines in my non medical point of view. I never went to medical school but like any cancer patient I feel like I am medically educated  now.

Things I have learned:

• Your initial staging can be wrong. When you have surgery, they try to give you a quick staging that is later validated by the pathology lab to confirm it. My surgeon refused to do this because he said they have a 50% error rate, so I had to wait an agonizing four days to find out what I really was. Since then I have heard numerous stories from patients being told that 'first my doctor said this but then the lab report came back and he changed to that'. I think I am glad I waited up front to get the real story.
• Your initial staging can be wrong months later. I know of two stories months out the doctors changed their staging. One was a local newscaster who was diagnosed with breast cancer at stage III but later was told she was only stage II. Would this have changed, and eased, her treatment? I don't know but it still would be upsetting.
• No matter what stage you are, there is still life after cancer. Just recently I met a woman whose children running a fundraiser for a neighbor with pancreatic cancer. She was so upset. She had no idea how I knew anything but I talked to her for a few minutes and she seemed to calmed down. Stage IV is not a death sentence. I have a friend who is over 30 years out from a Stage IV ovarian cancer diagnosis. Another friend recently died after 17 years at Stage IV breast cancer. A third friend is 6 years out from a stage IV diagnosis and is not even receiving treatment because she has no symptoms. If have more stories if you want to ask...
• Some cancers come with a stage IV diagnosis automatically, lymphoma for example, because they are everywhere. But that doesn't mean they are a death sentence any time soon.
• All cancers are not a death sentence. I can tell you stories and introduce you to people who are decades out from diagnosis and doing just fine thank you.

Now six  years out, we don't ask other 'what stage are you?'. We ask each other 'do you want to meet for coffee?'. We talk about life, shopping, holidays, work, stupid people, bad drivers, the latest news, the idiots in Washington, planning fun events, issues with relatives.... You know the things normal people talk about.

Every so often we talk about our next scans or doctor appointments but they do not dominate our lives. We do might flinch when we hear about stage IV cancer diagnosis because we know more about what it really means. We need the whole story behind it before we can discuss it calmly. We know better than to jump to conclusions.

All I can say is cancer takes on new meanings six years out.

Staging thyroid cancer

What is one of the most important things in your cancer diagnosis? The staging. So what if they changed the staging protocol Hmmm... What would you think of that?

Its a conspiracy by the evil ''THEM" if they can't kill us off, they can just confuse us.

But back to the staging of thyroid cancer. It used to be if you were under age 45 and had papillary thyroid cancer (the most common kind), you were stage I unless you had mets and then you were stage II. If you were over 45, they used the TNM system with Stages I-IV. I was under 45 so I was stage I. If I had been over 45 I would have been Stage III.

Now some research has been done (because we always need more research) and they think being age 45 has no significance. They say there is no real drop off in survival rates from ages 45-64 or even 74.

But what they do not tell me is am I still stage I and they are just raising the age limit to 64. Or am I stage III because they put us all in the other category. I am confused.

This is only being done to confuse us. I am sure it is a conspiracy.

Since about 5 people have asked

The significance of having positive lymph nodes means that it has started to spread. The first place it spreads usually is to the sentinel lymph nodes (the ones that drain the breast) and then moves to other places. Having one positive node means they need to check them all. The more positive lymph nodes you have the worse it is. Then they have to start testing and seeing where else it might have spread - usually lungs, bones, and liver first.

However, the amount of cancer in the one node is very small. Also, I have already had a bone scan (test for bone cancer) and it was clean. I think my chest x-ray was also clean as no one has told me other wise. If you want to learn more about breast cancer and how it spreads and is treated visit www.breastcancer.org.

Enough morbid stuff so early in the day. Yesterday I beat Walter at mini-golf!!!!! Hah!