Another story that makes me mad

I read this story on the UK's Daily Mail and it makes me mad. Basically what happened is a young mother who was pregnant with a third child was diagnosed with breast cancer, that had metastasized to her lungs,  shortly before she died before she died. Then her family was told she also had Ewing's Sarcoma at her post mortem.

Some diagnosis and treatment delays can be put on the mother's reluctance to have treatment because she was pregnant or that she blamed some of her symptoms on her pregnancy. Some of the other delays probably can be blamed on doctor's not listening to her as much as they could.

I can completely understand a woman who is pregnant is reluctant to take prescriptions or have scans because of the baby's  health. But if you ignore symptoms you can end up in dire straits. The article states that she had shoulder pain more than six months before her death but didn't call the doctor because she wanted to spend more time with her daughters.

But also I think doctors need to tell their patient's that the symptom could be something else and needs to be checked. And the patient's concerns should not go by the wayside. A breast lump could be a milk duct while pregnant but if it lasts, it shouldn't be ignored and probably deserves a biopsy.

And as someone who has multiple ailments, I really take the time to listen to my body and try to figure out what an issue may be from. Is it new or is it related to something I know about? If my feet or hands hurt, I attribute it to RA.But pain across my back usually is fibromyalgia. A cough would be very unusual for me and would prompt me to be concerned.

How long does it last? If it lasts more than a week and doesn't seem to be getting better, then I definitely call my doctor.  That is my rule of thumb these days.

How painful is it? If causing me extreme pain and lasts for more than a few minutes, I usually will call. If its moderate pain, I try taking pain meds and see how it goes. But if it recurs or is new and lasts, I will call as well.

And you should never be too busy to take care if your health.

Retraining my doctors

One of the skills I have developed over my years of health ailments is to train my doctors. I can present as a unique patient with my many health issues. I have learned that I need to make sure they are taking all my issues into account without appearing as a paranoid patient. But its all about me when I am paying to see them.

Today I see my second new therapist. My original therapist dared to retire so she recommended a new one for me - who turned out to want to talk about herself more than about me. So I tried a different one and the jury is still out. She keeps suggesting support groups for me. I like the idea of support groups but honestly with my health these days, they can be hard for me to get to. I no longer go to evening events unless obligatory.

I plan on having a discussion with her that she can't just send me to support groups. I want a therapist I can talk to about my health issues and how they can be hard to cope with. I don't want someone to tell me go to a support group to handle your problems. I do not believe there is any support group out there for me because my medical issues are too complex.If she can't be retrained she will be replaced.

Do I use therapy as a crutch? I sometimes debate this with myself. Do I really need therapy? Sometimes I don't. But sometimes I really do. I am dealing with my issues right now that I need to talk about to help me cope. So don't talk to me about a support group, okay?

Just because we can doesn't mean we want to

Genetic testing is all the rage now. I mean we have movie stars and news casters who are public with their cancer diagnosis and genetic test results. But not every one is not a fan of them.A recent study found that just because patients could have genetic testing, they didn't necessarily want it.

"The study found that of the 49 patient participants, all of whom have a family or personal history that puts them at-risk for development breast and other forms of cancer, more than one-third declined multiplex testing."

I am on their team. When I was diagnosed with breast cancer, I was told that for people who had both thyroid and breast cancer it was recommended that they get genetic testing for Cowden's syndrome. I basically went along with what they wanted and had the test. Then I thought about, well what the hell would I do with that information? My doctors told me if I had it, I would receive more screening than if I didn't.

Really? More screening? Is there more screening that I could have? I have had cancer twice and RA, fibromylagia, and my back. I see doctors all the time. I have had 25 appointments in the past six months plus five separate trips for blood work. These include CT scans, x-rays, eye doctor, dentist, specialists, and more. I don't think I can fit in much more into my schedule.

I am in the group of people who say just because we can do something, doesn't mean we have to or want to. For example, nowadays they microchip all our cats and dogs. So in theory we could probably microchip people. No one is every microchipping me. But I could clearly see this happening in a science fiction novel. Just because we can buy a new car every year, and some people do get a new car every couple of years, doesn't mean I see any need or want to. 
Plastic surgeons tell us that they can fix wrinkles and aging. I'm fine with the way I look. I don't want any more surgeries. Or to color my hair to hide the incoming grays. At least I have hair and I'm still here.

Genetic testing is possible and the science part of the world is all over it. But not every one wants it. They prefer to go through life with the crap shoot that comes along with it. I don't need a crystal ball in my life. It makes life more interesting to say the least.

Can we please be done with this and move on?

How much longer will we have to put up with time wasting, stupid arguments against the ACA? How many more Supreme Court Rulings do we need?

I realize that not everyone likes the fact that we have national health care now. But I am sure there are a lot of other laws on the books that some people don't like. In fact, I am sure there are some people being stupid and making senseless arguments about them as well.

Personally I would prefer that we move on from these stupid arguments and focus on other issues which are a real problem in this country - racism, discrimination, and poverty.

I am not saying that the ACA is perfect. But it does provide access to affordable health care for many who previously could not afford it. What's wrong with that?

Over testing vs. patient concerns

A new study in Canada states that early stage breast cancer patients are getting too many pretreatment imaging tests. An average of four after diagnosis. That's a lot.

In my case I had a mammogram that went bad and led to an ultrasound followed by a biopsy and a diagnosis. Then my surgeon sent me for an MRI to confirm there was nothing else. Then two surgeries, chemo, radiation, and hormone treatment. At some point a couple years after radiation,  I had a PET scan to confirm some aches and pains nothing - mostly because I was freaking out. Now I just have mammograms. As well as too many doctors wanting to check for lumps.

I am not sure what other tests I could have or should have had. Or needed. I think I got my share of radiation through all of that. So I am not sure what other screens I really needed.

But let's go back to the freak out I went through and a doctor sent me for what was probably an unneeded PET scan that found nothing. (I  no longer see this doctor, my radiation oncologist, as she used to tell me I shouldn't work because I had cancer and my husband should support me fully and other stupid statements.) This makes me wonder how many other doctors send patients for unneeded scans just because the patient mistakenly believes they have metastases. The doctor does the easy thing and sends them for some test so they do not have to deal with the freak out part.

In my opinion this goes back to the bedside manner stuff that isn't very present in medical school. If a patient is stressed about something, I do not think that sending someone for scans is always the right way to resolve the issue. I think it deserves an in depth conversation that includes the current screening standards, odds of their being an issue, and how to cope with the stress.

I asked my back pain doctor about more scans for my back as it had been five years since my last spine MRI. His response was there is no need for one as nothing indicated anything had changed. I can live with that kind of response. It keep me from being stressed - no indication of any changes. What if that my radiation oncologist had started a conversation with me about reasons the PET scan was not indicated?

In view of increased medical over spending and over treatment concerns, more conversations are warranted instead of more testing.

Are you normal?

So are you? After cancer, we are supposed to reach a 'new normal'. That means I am on my third normal at this point. I am not sure how normal that is. And I have completely lost track of what normal is supposed to be anyway.

This is the yesterday's Prickly City. For some reason it resonated with me. And I don't believe that 'new normal' crap anyway.

How much does that cost?

You go shopping and you can find price tags and signs to tell you the price. You go to the dentist or eye doctor and ask them for a price before a procedure and they tell you the price. You call the hospital and ask for a price and they can't tell you. Don't you want to know what something will cost before you have the procedure?

Here in Massachusetts they passed a law 18 months ago requiring hospitals to provide pricing in 48 hours. But many of the hospitals didn't meet that requirement when called for a price.

I really like this idea that hospitals provide pricing up front. The purpose of the law was to providing pricing transparency. It makes sense. So why don't they provide it? I have no idea. One of the hospitals called, out of 23, had a person dedicated to answering these requests. I think more hospitals should do this. Maybe the rest were not equipped for these questions.

Okay, not a very profound thought this morning but I need to get to work on time.