I am a blogging queen

Today I received this message:

Nicole.lascurain@healthline.com has left a new comment on your post "There and back again":

Hi Jill, 

I am happy to inform you that your blog has made Healthline’s list of the Best Breast Cancer Blogs of 2015! Healthline’s editors carefully selected each winner based on quality, frequency of updates and contribution to the community. You can see the full list here: http://www.healthline.com/health-slideshow/best-breast-cancer-blogs 

We created a badge to help you publicize your achievement: http://www.healthline.com/health/breast-cancer/best-blogs-badge-2015

We encourage you to embed this badge on your site and share your status with your followers. 

Thank you again for providing a great resource to the Breast Cancer community! I’m happy to answer any questions you may have. 

Best,
Nicole 

Nicole Lascurain • Assistant Marketing Manager
p: 415-281-3130 | e: nicole.lascurain@healthline.com
Healthline • The Power of Intelligent Health
660 Third Street, San Francisco, CA 94107
www.healthline.com | @Healthline | @HealthlineCorp
About Us: corp.healthline.com

Here is the Healthline link. I am number two on their slideshow, number one of the best breast cancer blogs of 2015! I am proud to be in the company of my new friend Mandi (Darn Good Lemonade, number 9 on the Healthline blog list)

Thank you Healthline for this recognition.

We have nothing to fear but fear itself

I have learned a bit more about Jackie Collins and keeping her breast cancer quiet. It turns out she could feel a lump two years before she went to a doctor. She told People magazine shortly before she died that she was scared to tell her doctor because of her family medical history.

I think this is the old face of cancer. Cancer is not what will necessarily kill us these days. Cancer is becoming a chronic instead of a terminal disease. And many cases when diagnosed early cancer is not terminal.

The worst thing we can do is not tell our doctors about our health issues. If we hide from them, ignore them, or pretend they aren't there (guilty of all of these) for too long, the results will not be the most optimal.

And if we do try to pretend they aren't there, of course they will get worse and not better, unless its all in your head anyway. (Yes I am guilty of that as well.)

Mutation Tracking

(I forgot to blog yesterday. Feel free to blame chemo brain, fibro fog or whatever.)

I just learned about some new research which has lead to the use of mutation tracking in the blood of patients previously treated for breast cancer. They look for DNA mutations to detection recurrence months before anything would be detectable through scans.


This makes a lot of sense to me. Why can't cancer be detected in DNA or some other way long before it can be found in a scan? Wouldn't it be wonderful to just go for an annual blood test or something that told you if you had cancer developing? Not to get ahead of myself but I am all for this.

I like this kind of progress. It actually seems that doctors are beginning to use it.

Deep thoughts in the middle of the night

Insomnia, partly caused by fibromyalgia which gives me fatigue and insomnia, causes deep thoughts in the middle of the night. Sometimes I actually remember these thoughts to ponder them further.

So what occurred to me last night was that my most significant health issues to me is no longer cancer. Cancer has definitely settled back to lurk but no longer dominates my life. I get to go to extra doctors, because of my medical history, we need to be sure, but cancer is not the focus. This is  nice mind set. I don't have the need to dwell on it in the middle of the night. Nor do I feel the need to dwell on it. Cancer is not worthy of any stress.

Back in July I saw my medical oncologist for my annual follow up. She took me off Femara after five years. The thought process was that Femara has not been shown to have additional benefit after five years and it could be contributing to my joint pains. But she said I could restart it if I felt stressed about potential recurrence. I didn't think that would be a problem and I am not stressed. And I might  have less joint pains than before.

Also my thyroid cancer has not been problematic. Its just there and I have extra blood work because of it. But its not a stressor.

However my rheumatoid and fibromyalgia tend to rule my life. If I bend wrong or spend too long out and about, they remind me they are there. Or I can not be doing anything and they tell me they rule my body. And fibro keeps me up at night.

Something is going to do me in at some point but I am not going to worry about it. Cancer doesn't deserve to stress me out. It doesn't deserve anything. Its just a piece of crap anyway. I am not going to waste my life worrying about cancer any more than I already have.

Maybe I'll get a good night's sleep tonight.

Breast Cancer Research Topics

In the middle of pinktober, after Metastatic Breast Cancer Day (October 13), I have some thoughts on breast cancer research I would like to share:

My first wish is that more money, time, and focus would be on metastatic breast cancer research. Breast cancer does not kill, metastatic or late stage breast cancer kills. The proportion of funds spent on metastatic breast cancer is minuscule. This needs to change or more and more women (and men) will continue to die from this disease.

My second wish is that more research would be done on DCIS to determine which cases are more likely to develop into potentially fatal disease vs. those which will remain benign. The vast majority of cases of breast cancer which are diagnosed are DCIS. Many of these patients are subjected to extensive surgery without really knowing if it was necessary or not. This needs to change.

Finally a cure for cancer would be quite welcome as well. According to Star Trek, a cure for cancer was discovered in the 21st century.....

Early detection and saving lives

Laurie over at Not Just About Cancer blogged about the myth of early detection and linked to a very good article on the same subject in Psychology Today. Early detection is supposed to be a good thing meaning they caught your disease (whatever it maybe) before it got really nasty.

Amy Robach and others say 'my mammogram saved my life'. But is this really true? I am not saying that they are lying but the question is did their mammogram really save their life? I have friends who believe the same thing. They attribute their still being alive because of their 'life saving mammogram'.

Let's take a look at this. First of all, as the Psychology Today article points out, if we were detecting more cancers earlier wouldn't the numbers for late detection or deaths be decreasing? They aren't.

"But this dramatic increase in "early-stage" diagnoses has not been followed with a decline in advanced breast cancers, as would be expected if early detection was the key to stopping progression."

Next, breast cancer is not a linear disease. There are many types which are more or less treatable and some it doesn't matter when they are caught, they are still going to kill you. And others are never going to be fatal and will resolve themselves. We just aren't very good about telling them apart. 

"For all we do not know about breast cancer (i.e., what exactly causes it, how to prevent it, how to keep it from recurring, how to keep people from dying from it if it spreads), there are things we do know. Breast cancer is complex. It stems from multiple causes, some of which include radiation, carcinogenic chemicals, and cancer promoters such as endocrine disrupting compounds(link is external). There are at least ten subtypes of breast cancer that behave and respond to treatments differently. One-size-fits-all treatment does not work. Mammograms do not prevent breast cancer; nor do they guarantee that the cancer found on a mammogram (if it is found on a mammogram) is indolent, lethal, or somewhere in between. Acknowledging these complexities would not only help to shift the breast cancer paradigm, it would serve those who want to be well informed."

So if you feel your mammogram saved your life, you may or may not be right.

More 'wonderful' news for me

I have to stop reading the news, damn it. I have tried to wean myself off the news, particularly medical news, Then I stop feeling educated and start feeling like a stupid patient. And if I stopped reading all news I could skip all elections and their related stupidity and inanity. But I haven't been able to stop, so I keep reading medical news and sometimes I find all sorts of stuff I may or may not want to know.

So today I have all sorts of  'great' news' I am not sure I wanted to know, well some I do like and some I don't.

First let's start off with the news that in view of huge increase in thyroid cancer diagnoses, new recommendations are that small papillary thyroid cancers be left alone and not treated.

"An increase in thyroid cancer diagnoses has led to unnecessary biopsies and surgeries. New guidelines from the American Thyroid Association endorse close observation as a possible treatment option for many small papillary thyroid tumors rather than surgery. The guidelines also caution against biopsies for many small tumors and say that when surgery is required, partial — not total — removal of the thyroid should be considered."

After a total thyroidectomy, the usual treatment for any thyroid cancer, the patient is left without a thyroid and requires lifetime follow up and medication. Thyroid cancer is slow growing and some unlikely to ever cause problems for the patient. This isn't that bad and it does show more progress in thyroid cancer treatment - instead of the usual 'one size fits all' approach.

Second, patients who are diagnosed with thyroid cancer and breast cancer are tested for Cowden's syndrome, a genetic trait which is characterized by the diagnosis of several cancers.

"Approximately 1 in 200,000 people are affected by Cowden disease and those who have the disorder have about an 85% lifetime risk for breast cancer and a 35% lifetime risk for epithelial thyroid cancer. Cowden disease is also associated with elevated risks for uterine, kidney and colon cancers."

I was tested for Cowdens and told I did not have it. And was told that I could have another mutation for which a gene had not yet been discovered. Now "Researchers have discovered a new gene, SEC23B, associated with Cowden disease, an inherited disorder that increases risk for thyroid, breast, endometrial and other cancers." This is real progress in that more than one gene mutation can cause similar problems.

So maybe there is a gene for me which would explain my unhealthy body. A note about gene mutations is that they do not have to be inherited, they can mutate just for you.

I saved the best for last. Rheumatoid arthritis has been shown to shorten your lifespan. Yippee yahoo. I needed to know that.

"Rheumatoid arthritis may raise the risk of early death by as much as 40 percent, with heart and respiratory problems the most common contributors to a shortened life span, a new study suggests."

And did you  know that some RA medications can cause respiratory problems? Since my diagnosis I am back to yearly chest x-rays.

See I really need to stop reading medical news. Its bad for my mental state, whatver that may be.

Medical research and me

Finally a study for me, sort of. In a recent study, they found that women with breast cancer were more likely to be diagnosed with thyroid cancer in the five years following their initial diagnosis. And vice versa, with thyroid cancer, you are more likely to be diagnosed with breast cancer.

So I am not really in the study because my cancers were 26 years apart. But its nice to get some logic for my medical crap.

The more complicated explanation is:

"The authors wrote that those second primary tumors detected within 5 years of the initial primary diagnosis show “favorable histopathological findings and prognosis,” especially in TC patients subsequently diagnosed with BC, and thus close monitoring for BC may be beneficial.

“Although the increased incidence appears to be principally due to increased detection rates, the greater expression of estrogen receptor and progesterone receptor in BC in patients with co-existing TC suggests that a specific molecular pathogenesis might underlie this association,” they concluded."

So whatever a 'histopathological finding' is and 'molecular pathogenesis' might mean, there may be some kind of reasoning behind my cancers.

As a patient, I hear about studies and clinical trials and more and they never seem to relate to me very much. Because my medical history always is different from everyone else. Its nice to have a study that could explain some of my medical stuff.

I have always been the patient who was too young for cancer, not likely to have rheumatoid, etc. But since I got all them anyway, even though I 'wasn't supposed to', I often am outside all normal parameters.

I can tell its Pinktober

Yes I admit I can be a news junkie. I also like to follow information on my (many) ailments. I get daily Google Alerts for most of them so I can be one of the first to know about the latest treatment options.

I can tell its Pinktober. All my breast cancer news includes the words 'awareness', 'pink', the s-word, or other related terms. Yesterday's alert included these items:

"Harford observes breast cancer awareness month"
"Breast cancer survivor finds comfort in delivering flowers to other patients at Texas hospital"
"WATCH: 29 year old beats breast cancer, gets featured on Pink Ribbon Connection"
"Breast cancer awareness chili cookoff Saturday"
"Breast cancer survivors event"

This drives me crazy. Please stop spending money on pink and spend the money on more important things like research.

Komen

Maybe you remember Komen invited me to a breast cancer blogger summit in February. I went to DC in March while experiencing the throes of Taxtotere side effects. Since then I've had one round of Abraxane, which should have been fine but wasn't. I've also had pneumonia for several weeks. So I'm finally getting around to blogging about my Komen experience.

I am changing my mind about Komen.

The summit began with introductions. There were eight or nine bloggers, not all of whom have actually had breast cancer but all have had some contact with it. Two of us with mets, one with triple negative disease, at least one in early stage treatment and one whose mother and father had both had breast cancer. Half white women, half African-American women. Komen marketing staff and several presenters.

Komen would like to "increase support" for

1) those living with metastatic disease

2) those in underserved populations such as poor, people of color, triple neg, etc.

3) involving more young researchers in working on breast cancer

Those are three powerful statements for Komen, especially numbers 1 and 3.

Sadly, no one really knows what number one means. A researcher who presented said that he didn't believe people with mets would benefit from more research into stage IV disease than from research into all kinds of breast cancer. This from a man who treats patients with mets! When pressed, he said that wasn't what he meant. But I heard him say it and I wish I'd recorded him. Komen has work to do in this area. We with mets just want to live our lives, and that means research into our disease. We must press this point. Loudly.

The example of a project in Chicago serving poor women showed a photo of an open sewer in a clinic where mammograms take place. Youd have thought it was a third world country, not the USA. So goal 2 is well in hand.

Goals 1 and 3 match well, if younger docs want to study mets and keep women alive longer. Either way, breast cancer needs more and newer researchers.

Yes, we met Nancy Brinker, now head of Komen global. Had dinner with the new CEO Dr. Judith Salerno. And we participated in the DC Race for the Cure.

Now to the last and least expected point. After the Race we were debriefing. Someone said she wasn't a blogger, hadn't been invited to the whole summit (but was sitting with us now, so someone invited her to join us in this most private part of our talks). She said something like, why are you so concerned about mets? What about poor women, women of color and their needs? To which I answered in some astonishment, I didn't set the agenda, Komen did. And I think it's great for Komen to give women with mets a place at the table. And I don't play mine is bigger than yours.

That was my Komen experience. I don't know who this woman was, and I don't want to name the researcher who seemed to think it was okay to develop new drugs to treat his patients but not me and thousands like me.

But the head of marketing took me out to dinner when in Seattle, and invited Dr G to join us, and included her new staff, the ED of Puget Sound Komen and another mets blogger flown here to appear in a PSA. R listened carefully, took notes, and I think we metsters do now have a place at the very large Komen table if we can sit there with open minds and without grudges. That's the biggest change I've seen in breast cancer in my 16 years from early stage to today.

This is not a study

There is exciting new research out about a new liquid breast cancer biopsy. Wow! Wonderful! Not so fast. The study looked at FOUR people so far. I know they have more patients lined up to include but I do think announcing advancement based on four people is a bit premature.

That's like saying 'I went to the beach and found four blue grains of sand immediately' so it was a blue sand beach. Um, that doesn't work.

In this case I clearly think more research is needed.

But what is very sad about this is that I hope it is not the wave of the future where initial results and greatly publicized. Even now it is difficult enough to figure out what medical research really is promising and which is not and is still years out from hitting the market. Media hype might get the researchers more money or help their CVs but it won't help the patients who are supposed to be the beneficiaries in the long run.

Let's please go back to focusing on the patients. We are supposed to be the focus of all the research anyway.

Over- and Under-Diagnosis and Treatment of Breast Cancer

I found this interesting discussion on over and under diagnosis of breast cancer and how to avoid it. Its definitely worth the read.

The big take away I found in the article is that the best way to avoid overdiagnosis is to get screening done at a breast center where the radiologists read mammograms daily. Through their jobs, they see many more breast images than other radiologists who are not as specialized and much more apt to correctly diagnose breast cancer.

Also, better education of patients and oncologists will also help with preventing over-treatment. Often the first reaction at a cancer diagnosis is 'get rid of it now and make sure it doesn't come back!' Fear takes over and the reaction of a patient goes instantly to get rid of it.

But maybe if the patient takes time to educate themselves on treatment possibilities the fear can be controlled. And the doctor is educated enough to provide the support to help the patient make the best choices and not the impulsive choices. Then the chance of over treatment can be reduced.

I think that this issue of over treatment and over diagnosis for many ailments needs more awareness and focus. We need better trained medical personnel who are able to better read screening images and provide better diagnoses. We also need additional training for medical personnel to help patients make better decisions. Finally we need more information available for patients to reduce the fear at diagnosis so they are able to make better decisions.

A long sad day

Yesterday I drove my parents to the memorial service for a neighbor from my childhood. It was a 330 mile round trip. By the time I got home it was nearly 9pm and 12 hours from when I left the house. I don't travel so well these days so I made a point of getting a lot of sleep last night.

Susan died last fall from breast cancer, six weeks after her diagnosis. She had ignored pain in her ribs last spring because she thought she had strained something. She was a farmer and very active. Also her tumor was so far back and so close to  her ribs, it may not have shown up on a mammogram. It wasn't until she started feeling many more symptoms did she end up in the emergency room and got some very bad news.

Her mother was also diagnosed with early stage breast cancer in early 2014. So in speaking with her two remaining sisters, I made a point of telling them both they should consider themselves high risk for breast cancer. They agreed and said they had already spoken to their doctors about it.

It was a nice memorial service and internment of her ashes followed by a family gathering at their house on the ocean. I got to catch up with both her sisters, mother, and another friend from 4-H back in the 1960s.

I also met a woman who has the same rheumatologist as me. Her rheumatoid was more advanced than mine and she has had six joints replaced - both ankles, knee, and hips. I can't remember them all. She has refused to go on to a biologic and has been on methotrexate for 14 years. She was in a wheelchair because of her recent surgeries. I never want to be in a wheel chair. Another sad reminder of the implications of my ailments.

Between a memorial service, a long drive, and seeing the implications of rheumatoid. It had an emotional as well as a physical toll. I need a day off today but have too much to do.