Why not just get rid of it?

Its been suggested that because of my high rick for cancer just get rid of it. Your know have surgery, take it out. Everything will be better without the risk right.

No, I have Pulmonary Hypertension. Pulmonary Hypertension is high blood pressure of the lungs. Take a look at http://www.SometimesItsPH.org

The site give a good definition of PH. I have many of the symptoms. Anyone can be diagnosed of PH. About half the people I met at the last convention are on oxygen. I have many PH symptoms but so far am not on oxygen.

I had complications with being put to sleep for surgery because of PH. My doctors have said its better for me to avoid surgery when possible. So I am not a candidate for any cancer prevention surgery.

I was diagnosed with pulmonary hypertension the same time I was diagnosed with right side heart failure. But thats another post.

A couple of sites

SometimesItsPH.org

PHAssociation

AmericanHeartAssociation

Check out heart failure on the American Heart Association site.

So What do We do Now?

For a while I have been attempting to shorten my list of doctors.My

doctors are educated nice people, but over a years time I see way to many

doctors. Part of this comes from three emergency visits and two hospital admits last year.

October of 2015 I saw the breast specialist had my mammogram, she

found something so I had the ultra sound. Ended up getting cream for the

nipple and a follow up in three weeks. Then ended up with a nipple biopsy.

Everything turned out ok, but its getting old. The breast specialist handed

me a paper to get an evaluation with a gyn oncologist. My appointment with him was yesterday.

Yesterday’s appointment turned out better than I thought.

The physicians assistant asked lots of questions. She said yes I was in the right place.

When the doctor came in he talked, about Cowdens and my risk to get a third cancer diagnosis.

He talked about options and how I can prevent a third cancer diagnosis. Then he asked for my questions.

 Dave was out in the waiting room so I asked if he could come in and have the doctor repeat Everything.

So in Dave comes and I get another chance to listen.

I could have my uterus removed and  be done with everything unless they found cancer.

I could have yearly screenings, or we could do nothing.

In my case I have been told many times no more surgery. So that one is out.

IMG_0115We ended up scheduling a biopsy in February.

Ok so what if someday they find cancer. I have a 28% risk. The doctors talked about options other than surgery.

First time I went to the Gyn doctor and got to keep my clothes on.

I left knowing its up to me.

Birthday week

Its been a long week. I had horrible back pain. The kind that is a 15 on a scale of one to ten.

The pain didn’t go way and got worse. So Dave and I spent Sunday in the emergency room.

I had blood drawn, another ct without contrast and a VQ scan. My last ct with contrast was this past March 13.

The ct was fine stated my colon cancer had not returned. The word report needs redone. My AVM has gotten so big it was called something I was not born with.

But that’s another story.

I ended up spending Sunday in the hospital and was discharged early Monday evening.

The discharging doctor stressed I see the spinal surgeon for pain management and my pain is in a different place than the old break from the ct scan.

As far as I know I only broke my back is a car accident when I was 16. Currently I am over 50.

This doctor said he had everything set up for my appointment this week.

Well I got an appointment for tomorrow right down the street from where I live.

But they need a copy of the ct from the 13th. Yesterday I called attempting to get my ct on a disk for the appointment tomorrow.

I was told I had to go downtown Cleveland to pick it up if it was ready and there was a charge.

This morning Dave had blood drawn and we talked to a really nice lady in the records room. She could have made my copy in 45 minutes.

We will be back tomorrow to pick it up.

Now I remember another PTEN contact blogging she gets what she needs to get done for copies of scans before leaving.

I will know better next time.

Thats Me

Dave says I am more tech minded than he is. This is not one of them.

After getting out of the hospital last year I got a lung doctor for my PH. Her medical student came in and asked lots of questions.

He left and was gone for a long time. To long when your tired and want to go home. So I left Dave in the room,

Found the medical student and what ended up being my doctor by the computer attempting to find someone else with Cowden’s Syndrome and PH.

They could not find anyone.

The doctor came in, asked lots of questions. She did tests and put me on brand new PH medicine.

When everything was over she said she was going to do a paper on me. The last three times I saw her I asked about the paper.

Her answer was it takes a long time to be published. This fall she moved to another part of the hospital. My new doctor said the same thing research takes time.

For whatever the reason I couldn’t get the cut and paste to work. So if your interested Google PTEN and pulmonary arterial hypertension.

Thats how I found it.

Abstract
The pathogenesis of pulmonary arterial hypertension (PAH) exhibits many neoplastic-like features. Cowden syndrome is a difficult-to-recognize heritable cancer syndrome caused by a germline mutation in the phosphatase-and-tensin homolog deleted on the chromosome 10 (PTEN) gene. PTEN regulation has been implicated in cancer development and, more recently, PAH pathogenesis. Here we report a case of PAH in a patient with Cowden syndrome and the response to pulmonary vasodilators.

Another one

 In 2002 long before  Cowden’s Syndrome I had early stage breast cancer in the left breast

The breast cancer was treated with a lumpectomy radiation and five long years of horrible medicine.

Eleven years later I get these purple lumps in my radiated breast. Theses lumps appear, continue to grow and are tender to the touch.

 Last Halloween I had a lump under the left breast. Everything came back ok.

This time I had a mammogram in early October. Everything was good.

Since I had a mammogram less than a month ago I didn’t need another one.

But the ultrasound of the lump said its the same thing I had last year.

The surgeon called the lump an atypical lesion that has to come out. So I have an outpatient procedure Dec 6th to take the lump out.

The surgeons nurse agreed with Dave cancer doesn’t grow that fast.

But the lump still has to come out.

Tomorrow

I am not sure where to start. I haven’t written in a long time.

Maybe ten days to two weeks after my doctor’s appointment with the breast specialist, I was getting dressed and thought I felt something.

Now this is after having a good mammogram and the breast ultrasound.

So I felt again and there it was. This lump looked bruised and was on the breast.

A week went by and the lump is still there. I sleep on my stomach so it takes awhile to get comfortable.

Last week I called the breast specialist. I talked to her nurse. I  showed it to the cancer doctor during my appointment last Thursday.

He looked at it did an exam and said he had never seen anything like that before.

He got me a same day appointment with my breast surgeon. Her office called, canceled my appointment and suggested I see the breast specialist.

My breast specialist is out of the country. I tried seeing another doctor in her office once, she was nice, but didn’t want to see me because of the Cowden’s.

So tomorrow I have a mammogram, and breast ultrasound before seeing the breast surgeon. Dave says pretty soon I’m going to glow.

Getting ready for PH Conference

Between having a sick dog, my doctors appointments and getting ready to go to the PH Conference,  I have been busy.

 Bright and early Friday we are going to the Pulmonary Hypertension International conference.

This is my first time attending the conference. It should be educational and fun.

Part of the conference is the research room. Researchers from all over the country have the opportunity to talk to people with PH.

Two weeks ago I had an echo, did the six-minute walk and saw my PH doctor.

Friday I had three appointments at the main campus on the same day.

The tech doing my echo asked Dave if he wanted to watch. He smile and followed us to the room.

No one had ever offered him the opportunity to watch before. He got to see what the test was like and why it takes so long.

The six-minute walk was next. this was my third six-minute walk. I did about the same as the last one.

My doctor’s appointment was next. She did not have the results of the echo.

Dave asked what kind of pulmonary hypertension do I have?

The doctor explained I have Class one PAH with Cowden’s Syndrome and high volume heart failure.

She went on to say from her research, I am the only one.

So the doctors at the conference are going to want to talk to me. When I was little I use to say I am one of a kind, who knew.