Can we have a forum for "older" people with bc?

Oh  Sandra I KNOW how disappointed you must be....but good that is was found BEFORE you "went under".....I know saying this DOES NOT help the sinking feeling you must feel...I want to cry for you...I KNOW...I KNOW!

I know the sinking feeling of surgery cancellations....as my BMX was cancelled once, after admitted  to the hospital and undressed/dressed for the surgery, due to a irregular EKG that was done FOUR days before surgery!!!!!

AND then again another reconstruction surgery cancellation (a year ago July) because my EKG showed I had a heart attack (silent heart attack) sometime between my BMX, 2 other recon. surgeries and July....had to have a stress test before getting my shar pei foobs "remodelled".......I keep putting off my next surgery to help "FLOPPY" flat foob..& fat grafting #2, and to fix or remove the misplaced nips.....WHOMEVER said that foobs are always Perky is mistaken!......my stretchy, formed, bra hides it.....the same kind of bra that hid everything when I had NO BOOB and NO FOOBS.....NO tissue expanders. NOTHING

Today I will cry for YOU SANDRA and your pain and disappointment.....did they remove your picc line?

Sandra, What a bummer!! And after they tortured you half to death with the picc line. I guess it's a good thing if the anesthesia would be dangerous, but heck, after you're all set to go. Hugs.

And here I hollered because my "referral" didn't get to the Diagnostic Mammogram place.... I was undressed, had that warm "gown" on, and the gal came out and had to go home, just because they didn't get a referral from my PC....  I was not happy.... but at least THAT was only for a Mammogram...  

I just had to make another appointment, until THEY and my PC got it straightened out..... and did what they were supposed to do.  

Yes, will they remove your pic line?  Whatever that is?  

Morning Di and Jackie!

Thanks everyone for your kind words. I'm comforted by knowing others have been through a last minute cancellation and things worked out in the end.

I went back to the hospital and got the PICC line taken out. My pity party is over and now I just feel like a balloon that's been leaking helium all day and is about to fall to the floor. Mad and sad are over so make room for depression. My surgeon called  to apologize again and explain a little bit more. I've been on thyroid meds for about 20 years and it's not unusual for the routine lab tests to show a rise now and then. The synthyroid dosage gets adjusted and I'm fine. I go to an endocrinologist several times a year. In June it was fine. Now all of the sudden the TSH jumped to 11.9 when it's supposed to be no more than 3.0 by the new guidelines. They were worried about something called a Thyroid Storm, which can be fatal. It's a major emergency. While under general anesthesia, your temp goes up to 105-106, heart goes crazy, breathing stops, etc. Doesn't sound like much fun, does it?  Since my heart tends to like to stop at inopportune times anyway, the surgeon cancelled the surgery. He says he will reschedule for 4 weeks from now but will cancel again if I don't have it under control by then. I go back to Endo for an appointment next week so we'll see what can be done. I Googled Thryoid Storm. Eek! Good think they cancelled the surgery.

Hi all My BC friends,

Just catching up on posts, as usual it is late.  

Sandra, hang in there, Glad they found the problem before surgery.  Mimi, hope you have a great trip SA is a wonderful city.

I believe it is Puffin who finished Chemo, Congrats.

Don't know when I posted last, but last Friday we had so much rain in Fort Davis that our shop flooded.

Then the hot water quit at the house and flooded the kitchen on Sun.  What Fun.

This is the second time in  5 or 6 years.  State does not keep the storm drain cleaned out along the highway and county does not keep ditches cleaned out.  We are back up and running now.

The state of Florida wants us to adopt our DGD.  We have agreed, but it is such a legal mess. The down side is that her parents have to give up their parental rights or the state will take them away.  The upside is that she will get her college tuition and fees paid.  I think she will have to go to college in FL, but she has some good friends there already.  

The thing is, adoption will not change anything with her Dad or Mom, we will always give them access to her if she chooses.  It has been a nightmare.  We are praying for God's guidance.  

I found out today that for every child in foster care that is adopted in any state the Fed's give the sate $4,000 to 6,000.  Do not understand this

Hugs and Blessings to all

All kinds of stuff going on

Sandra so excited they found out before surgery but sorry about the pic line, glad you got it out.

I also have a thyroid issue but never have had that kind of issue.

Happy friday to all have a good weekend....

WAVING TO ALL.....big hugs

Okay, THANKS Sassy...  I just KNEW you knew a lot more about what Sandra is talking about than I do...    

Sometimes Sandra, something just jumps out with a gals post, and when I read yours, I was really concerned... Usually we just go on our merry way, and talk and tease, but when something is serious, we just want to help take care of it.  

Breast Cancer is one thing, and all these women go through a lot more than I did, but then throw in OTHER problems that might pop up,  and  we have to just listen and take care of  these  maybe life threatening  happenings....   I'm SOOOOOOOOOOoooooooooo glad they didn't go ahead with the surgery!   

Next time, after talking with your team, you will be assured that they have taken the very best precautions with this never happening again.   

Sheesh!  I just worry about you guys!  

Mommarch.... we are all hoping too, that things work out the best for your GrandDaughter!    And the RAINS?  Dang!  Things just HAVE to get better for you!

Thanks again Sass!

At the close of life the question will be not how much have you got, but how much have you given; not how much have you won, but how much have you done; not how much have you saved; but how much have you sacrificed;  how much have you loved and served, not how much were you honored.

Nathan C. Schaeffer

Hi everyone

Congrats Puffin on finishing chemo! What a milestone!

Sandra- sorry about the delay, but glad they prevented a possible major catastrophe! Hang in there.

Update on birthdays: I have entered everyone's birthdays on 2 different calendars - hopefully that will double remind me.

Mommarch- as you all know by now, I have 2 children we adopted thru the Fl foster care system. Of course, when they were foster children, we received a monthly stipend for them. What I found absolutely oxymoronic was that we had to pay the state the equivalent of two months stipends so we could adopt them and therefore the state would no longer pay us the stipend. Go figure....

Horrible day yesterday- my SIL and I took my 12 year old grandson for what we thought would be a routine check up on a minor heart defect he was born with. The did an ECHO to check it, and I started thinking they were taking a very long time doing it- I have had ECHOs done regularly thru my chemo. The Dr came in to see if we were done, and took over doing it. There was a lot of quiet words between them. Then the Dr left and came back with his partner, and asked us to go back to the regular exam room while he and his partner reviewed the ECHO.

He finally came back with a picture of the heart and started drawing in it with 3different colored pens. Long story short, they ( the tech and both Drs) agreed that it was very likely Andrew had a tear in the aortic vessel, which was life threatening. Dr was going to try to schedule a CAT scan at the children's hospital which is part of the university I have gotten all my cancer treatments at, but made it very clear that if he couldn't get it scheduled yesterday, we could take Andrew home, but basically had to keep him on bed rest until the test was done. 

Because it was after 1pm on a Fri afternoon, he arranged to have the test done thru the ER of that hospital. One of the things that scared me was the Dr's office was on the campus of a major hospital, but he was sending us to a hospital an hour away. We got to the hospital about 3, and were there till almost 9.  I texted the other kids, my sister, my best friend, begging them all to pray. The reaction was total shock all around. My DS#1 had just arrived at Myrtle Beach for a surprise weekend away to celebrate his birthday - he wanted to leave there immediately, take his wife and daughter home and head here. I convinced him to wait until we got the results of the test. 

Finally, we got the results, and Andrew is okay. No tear. There is some pooling of blood in that area, which is probably related to the birth defect, and needs to be taken care of- probably with blood thinners for a while, but his life is not in danger, and he is not facing open heart surgery. What a relief! By the time I let DS know he was checking for a flight from Myrtle Beach to Atlanta. His wife had objected because they had taken only one bag to the beach for both of them. His response was that he would fly with the clothes on his back and buy a change of clothes and a toothbrush when he got here. 

Kind of like BC, unless you have been through it, you don't really understand. Having the life of one of my precious grandchilden on the line, even if it was only for a couple of hours, is beyond description. As always in a crisis, I was calm on the outside, but once we got the results, I started shaking and didn't stop for hours. 

My daughter just came down saying we have a major catastrophe upstairs. I said if Andrew and Michael were okay, there was no catastrophe. The dryer broke. I said that's a financial problem, not a catastrophe! 

Wishing you all a "catastrophe" free weekend

Anne

Anne, I know you were beyond terrified with news like that! A tear in the aorta is very serious and absolutely life threatening so I'm glad they didn't wait any longer to confirm it one way or the other. The blood thinner will help and they will watch him carefully I'm sure. Do they feel he will end up needing open heart surgery some day? Medicine has made huge progress in this area in the last few years and they are working on ways to fix problems like this without having to crack the chest. I have a large 4.125 cm aneurysm in the ascending aorta of my heart, and that's what killed my grandfather and uncle, so I'm aware of the consequences if it develops a leak or, God forbid, bursts with no notice like my relatives' did. If it grows to 5 cm, they will do surgery. (January tests showed it hadn't grown at all since the previous tests. ) Also Anne, take comfort in knowing that children come through open heart surgery much better than adults and recover quicker.

Momarch, it seems that when the bad luck cloud finds you, it sticks around for awhile. The news about your granddaughter is good, however. I'm sure the red tape is beyond belief and will have you tied up for quite a while, but in the end, she will be yours. I love your attitude about her seeing her bio parents. You two are awesome grandparents.

Chevy, thanks for getting me a "consult" with Sassy. I've had a day now to find out more about Thyroid Storm - the more I read, the happier I am that my surgery got cancelled. Some of the articles say the fatality rate can be as high as 50% when general anesthesia is given to someone who has never been treated for a thyroid disorder and has a very highly elevated TSH. My odds were only 25% since in 20 years of treatment, my lab numbers have always been controllable. You will start hearing more and more people saying they've been diagnosed with thyroid issues because the lab values that indicate what's normal and what's not were universally changed a few months ago. TSH under 5.0 was the goal in years past, now it's under 3.0. No wonder my 11.9 grabbed their attention yesterday morning. 

Your thyroid controls most of your body in one way or the other, and I was familiar with the symptoms that occur when your thyroid acts up, but didn't know about Thyroid Storm until yesterday. My numbers climb up to 7 and 8 sometimes, and drop down the other way sometimes as well. It's common in families. My mother ended up having hers removed, my sister has problems, and one of my daughters is showing symptoms in her late 30's. Many, many people have misbehaving thyroid glands and don't know it. It is controlled by a simple daily pill. The doctors test you a couple of times a year and nearly always have to tweak the dosage strength up or down (or both) during a 12 month period. Does your doctor test your TSH on your yearly exam? 

Sandra, thank you for sharing your thyroid story as I don't think my thyroid levels were checked before surgery.  Now I will know to ask about that if I ever need surgery again.  I had radioactive iodine treatment for Graves disease 19 years ago and now take Synthroid.  I am sorry about the delay in your surgery but so happy that you did not face problems during surgery.  I hope your thyroid issue gets adjusted quickly without you feeling bad in the meantime.

 Sandra. going to post my PM response to you with editing.  Too much of the info is universally needed. Twenty years of known problems for you, me too. But I didn't have the index of suspicion that my docs didn't have a clue about thyroid significance until this last 1 3/4's years. 

There are many good web sites on the subject. I found two that are eye openers. A few details about me, then I will tell you about the websites.

BTW Reread this as a first read. I did a very poor job in proof reading my PM to you. I'll try better with this.

I developed the worst of symptoms starting in late Fall of 2012. Rapid weight gain, exacerbation( suddenly worse than before) of pain, hair falling out, eczema of hands, insomnia exacerbation, fatigue, decrease in stamina, and a laundry list more.  Complaints ignored b/c TSH was in the low normal range. Then the kicker. A goiter was found during my yearly CT in May of 2013. The docs, endocrine and ENT, jumped on biopsy. Pathologist didn't dx anything unusual in bx of july 3013. Docs wanted serial Ultrasounds. In Jan. 2014, I said we all jumped on the cancer bandwagon, but no basic blood work had been done. I asked for a T4, T3. and auto antibodies. The T's were in range. Serial TSH was low normal. 

The Thyroglobulin(Tg) was elevated at 52. Top normal 30. The antibodies were normal. If the antibodies had been abnormal, I would have gotten a dx of Hashi's. The Ent doc immediately did a two step and talked removal. My search already told me that elevated Tg with normal antibodies can be associated with cancer. So, his reaction didn't surprise me. Tg becomes the tumor marker after removing a cancerous Thyroid. Technically. it is not used as a marker before a definitive pathology dx is made.

Thyroidectomy Feb 28th, Pathologist still didn't find anything unusual. Not even thyroiditis. BUT he did send it out for a 2nd opinion to Quest lab. They did stainings that he didn't do. Papillary Ca with a follicular variant diffusely throughout both lobes AND Lymphocytic thyroiditis.  Pathologist woefully stupid. Took awhile for me too let it go. He admitted to ENT doc, that in doing a re-look at the July bx slides both were present.

The story is a typical cluster foul-up, but I'll never get to the stuff we want to talk about if I talked of everything.

The web sites. 

First one, "Stop The Thyroid Madness" STTM. Excellent site. The best part is the historical perspective that it gives pre- development of TSH and post management of thyroid based on this singular lab value. I suggest getting the book off Amazon --< 25$. Mine is getting marked up progressively with yellow marker and margin notes. The draw back to the site is it's not physician directed. Just thousands of very unhappy Thyroid patients seeking better care. Loaded with info though.

Second web site, drrind.com. Board certified Anesthiologist who specialized in pain management then migrated to Holistic medicine. His site is based allot on science. BUT with an absolutely brilliant way of making the info learnable. Superb teacher.

Dr. Rind has developed several tools to interpret Thyroid labs. They are different than what anyone else is doing. Except those he is teaching throughout the country. I believe he is leading a revolution in Thyroid management. He is a "must read" source.

My transition moment was after taking my local Endocrine to task for not listening. I grilled him. He was not happy that I went to Moffit Cancer Center in Tampa to see DR.Bryan Mciver. and the other questions I asked. Driving to another appointment, I was talking to myself. I was thinking --Why the divergent thought/treatment/ lack of concensus on Thyroid everything and this is 2014. Why are they so resistant to listening to the patients. Bingo RESISTANT.

Thyroid resistance. Never heard of it. BUT very many medical things are related to cell wall resistance. The most widely known problem that is accepted by medicine is Insulin Resistance. Googled it. Yup, Thyroid Resistance has been studied. Extensively. My conclusion before finding Rinds web page was the answer has been known for a very long time, but orthodox medicine has been ignoring it b/c of reliance on TSH as the gold standard.

With insulin resistance, circulating insulin can be normal or high, but the cell wall won't let the insulin work at the cell wall, to allow sugar to enter the cell. What hit me at the moment of insight was---if thyroid resistance exsisted , it would explain why lab studies were in a normal range, but the patient was symptomatic. The Hormone is present, it just can't work.

DR. Rinds web site is best at explaining the necessary lab studies and interpretation using his Calulator to determine what the studies are telling us.

Free T4, Free T3 and Reverse T3(RT3). Over time he has learned that Reverse T3 is inversely related to FreeT3. Inverse--opposite. He states that he no longer uses this test based on that conclusion learned over many years. STTM you will find they make a big deal about Reverse T3. If you can get your doc to run it when doing baseline studies that Dr.Rind recommends, I think it is good. Until we understand more, having it in the baseline studies may prove useful in the future.

T4 is transformed into FreeT3 and ReverseT3. FreeT3 is the primary hormone that makes the cells respond. ReverseT3 is the primary hormone that stops FreeT3 from working. It's not that RT3 is bad. When they both work right, it's good. They are supposed to work together The easiest way to understand it is to understand what a "negative feedback" loop is. Google-- Negative feedback mechanism in human anatomy. Look for a simple definition.

The problem with RT3, is that it has a very strong bond to the cell wall, once it attaches to the cell wall receptor, it prevents FT3 from working. FT3 just can't knock it off. 

Think of a door. The door is the cell wall. Beyond the door is the inside of the cell. The door handle is the  receptor site. To open the door, the handle must be turned. RT3 latches onto the door handle, it won't let FT3 open the door. Without the door being opened the FT3 hormone can't get inside to make things work inside the cell.

Confused? It'll take some reading to start putting the puzzle pieces together. I haven't absorbed everything yet by any stretch LOL. But I am very lucky that my PCP is willing to run any test I want, and she started me on a Porcine thyroid med the same day I had my labs done. I've slowed down on the reading b/c that was my primary end goal. I reached the goal, I don't have to fight to get there. Hope that made sense.

Plus, what the orthodox docs don't look at is adrenal stress. Also, they don't rule out primary Pituitary problems. It's b/c of their reliance on that pesky TSH.

Your appointment is two days away. Not sure how much reading you can absorb in this time.

Questions for doc

1. what are the labs on hand, saying is the problem ( SEE BELOW FOR ADDITIONALTHOUGHTS,  CRITICALLY IMPORTANT)

2. Additional lab studies FT4, FT3, RT3, TSH. AM cortisol.

3. Cheek swab studies of cortisol........Usual study is am blood cortisol. Compare what STTM and Dr. Rind say to find an answer. STTM recommends A cheek swab be done fours times throughout the day they are obtained. Dr. Rind --I forget. Discuss this, but you won't likely have time to study it well enough to give a strong explanation of why you want it done if the doc says no.

4. Baseline autoantibody studies for Celiac Disease. Celiac disease signs and symptoms can mimic Thyroid problems. Testing for these, is a good rule out that CD isn't a hidden problem mucking things up. That's a good short explanation, but there is a better explanation on STTM web site. Even better explanation in the book.

5. Why the Thyroid Perioxidase Antibody(TPO) elevation ?

6. Explain difference between Thyroglobulin& autoantibodies and TPO? Why use one test over the other? Is anything being missed by not getting both tests done as a baseline? Frankly, I never got a solid answer on this one. I would like an answer too. It became unimportant to me b/c the Tg level lead to the thyroid removal and at that time that was my goaL. The Thyroglbulin & Tg antibodies were My ENT's choice. Later Moffit Cancer center doc said TPO was a better choice. Again I didn't care at that point to want an explanation. BUT they each measure something different, so, why not run them both?

The official change of TSH normal range as you reference as being done in April, has been the accepted gold standard by orthodox endocrines for about 5-6 years. Not sure why the rest of the docs didn't know, or even some Endocrines.

-----------------------------

Your post from yesterday, three things. 

First, the Thyroid Storm. I didn't want to scare you. The benefit to you right now of that near miss situation IS they are going to be relentless to getting to the bottom of your thyroid problem.

Second, In yesterday's post, you gave a history of your TSH jumping all around. When I was learning about Thyroglbulin & antibodies. I studied the normals and abnormals. Tg abnormal, plus, antibody elevation indicate Hashimoto's Thyroiditis. There are four types. I didn't fit any type b/c my antibodies were normal. I raised the question to my PCP. Her explanation now seems so simple. In the dx of Hashi's an evaluation of the TSH is a critical clue. IF serial TSH shows an increase one time,  decrease another time over multiple lab studies with drug adjustments. But control is not established, it indicates Hashi's should be considered and tested for. Testing Tg & antibodies is the diagnostic test.

Third, your thoracic aneurysm. Yes, a standard rule of thumb in the last 20 some years has been to wait until the 5 cm mark. BUT you are unique. One there is a familial history. Plus, you have the co-morbidity problem of thyroid. Comorbid means other medical problems. I know you have excellent access to docs and medical care.  Please, consider  a second opinion through the Cleveland Clinic in Cleveland Ohio. The CC is the premier institution in cardiac surgery in the world. In the mean time keeping your blood pressure tightly controlled is important. You discussed anticoagulants, but didn't see or may have missed that you are on one? Avoid all activities that elevate intrathoracic-cardiovascular pressure i.e lifting weights or exercise. that changes the pressure in the chest and great vessels--Aorta.  Additionally, google keywords "Thyroid and cardiovascular affects". Thyroid has an impact on all systems and cells, but with this particular search stick to the cardiovascular affects.

Sure hope I did a better job of editing this time. Good Luck! sassy

MOM, Chevy's used to it.  LOL. Believe it or not that "book" up their is me keeping it short.

Sassy, I'd just like to weigh in here with my two cents. I've been following your notes on thyroid, especially interesting is the possible link between thyroid and BC. I've been on synthroid for nearly 15 years. All the women in my family are hypothroid, one niece has Hashi. I've seen an endo for two years now. Apparently there is a "thyroid philosophy". Who knew. He said that the way they determine a "normal" thyroid level is with the use of a bell curve: normal is where 50% of everyone is on the curve. But that doesn't mean that that is what's normal for any individual; some people require a higher or lower level to be asymptomatic. So he uses a combination of blood tests and symptoms to determine an adequate dose. He continued to raise it until I am now at a dosage of 200mcg. They don't even make that, I have to take 2-100mcg per day. It was not long after that that the lump showed up and I've been on the BC merry-go-round since. I was supposed to see him in August but called and explained my situation, so am now scheduled for November, when I'll be PFC. I'll have to ask him what he thinks about the iodine/thyroid/BC link. I'm sure he'll find it interesting, if he hasn't known about it already. He's my favorite doc after my onco. You know, the kind that looks at you instead of a computer screen.

OMG Mags" He's my favorite doc after my onco. You know, the kind that looks at you instead of a computer screen." That was one item that I took Endoc doc to task over. He typed almost the whole time I was with him for an appointment. For many of the docs I would get their office notes. With the Endoc, I didn't except for last office note-----I was flabberghasted. One word------FICTION. There were so many wrong things, but the clincher was, I had laundry list of s/s's and after the computer prompt:  Patient Complaints: he documented " NONE." Still not sure what to do. But he's history.

It will be interesting if you read the historical info on STTM, to see your comments. Your doc is managing you the way docs did before TSH. Med AND listening to how you felt.