My Brother's Oncologist Will Run The Genetic Testing

[Maxine]

I don't know if read what I posted a while back, but someone responded about testing for lynch syndrome. here's a link to the thread;

http://dinet.ipbhost.com/index.php?showtop...=lynch+syndrome

Anyway, thank you Anna for sending me a PM on this. I called my brother's oncologist, and the receptionist and I had a short discussion about my family history. She remembered my brother Joe. A couple weeks passed by, and no phone call back. I just figured that this was just another dismissal. However, something in the back of my mind said this doc won't let this go----as he wanted to test my brother for this, but my brother didn't want to deal with any more testing, and I'm not sure he understood the full reason for this testing.

MY brother was a brave soldier thoughtout his brave battle with colon cancer. In fact it will be a year on Feb. 16th that he passed away. He went into the hospital on Valentine's Day. He tried to fool everyone on how bad off he was, and sometimes it worked. He didn't want anyone to be feel afraid.

I can't think of a better thing to in my brother's memory then to get this genetic testing done, and it's strange that the appointment with his oncologist is Feb. 16th, one year from my brother's passing. I just noticed this now as I typed.

Now I need to get all of my blood work together, as the oncologist wants to see all of it.

My PCP has to find a way to get a colonoscopy done safely. My POTS has been pretty bad, and I know it's because my cervical/cranial instability is worse, and the swelling near my clavicle has been worse. I'm just plain worn out. However, I understand why both my PCP and the surgeon who would do the colonoscopy are concerned. I have apnea, and the EDS geneticist said it's most definately CENTRAL sleep apnea due to brain stem compression, and the big concern is the low BP, and cervical/cranial instability with the sedation/anesthesia. If I needed to be intubated, it would be a problem due to the CCI, and intubation is a reality with the apnea issues, as my breathing is affected while I'm awake, and just the propranolol alone gives me trouble sometimes. I'm sure in the right hands I'd be OK, but I don't have any idea what I'm up against, as the lower bowel is littered with diverticuli------75% of IT!

Who knows if the bowel is OK enough to be poked and proded with the scope? The general surgeon is the kindest woman, and she's taken all of this seriously, and trying to weigh the pros and cons of all this. It's plain scarey. Especially with the pain I'm having on the right mid cut near the large 5cm diverticuli in small bowel. I had diarrhea on Sunday, and I never have that. I didn't have the flu, and everything I ate was noting out of the usual for me. I didn't have nausea, and my appetite was normal other then getting full really fast like I normally do.

We went to my brother and other sister in law's house to take a meal over because she had surgery, and needs all the help she can get. I munched on some fresh veggies, and I hate to be gross, but the broccli came out looking the same way a couple hours later. It went through me so fast. I've never had this happen that I can remember. I'm kind of concerned.

I always have that kind of a cramp type pain over there, and sometimes I can't tell if it's pain radiating from my desiccated disc on T-8----thoracic spine, or if it's my gut because sometimes it will spread across the spleen area, and can be breifly intense and sharp.

Then I have this fear of the doc finding something horrible up there with the scope. I just can't wait to get past all of this.

Maxine :0)

[joy]

That is a lot to be dealing with, please keep us posted and know that we are thinking of you and I am praying for you!

[anna]

Dear Maxine,

I am so sorry you are having to deal with all this, but I do think you are right to go down the testing route. I feel it is so important that if you find out you have this condition in the family you can all be monitored and maybe try the aspirin trial. I have a friend who has had colon cancer, it was picked up swiftly as she is checked regularly for polyps and has CT scans yearly as she has a form of familial cancer which she discovered after her mum passed away, now she has made sure all her children will be screened when needs be.

Re: Colonoscopy I had one twenty years or so back before we had any idea about the EDS, I was fine with the procedure, the young techy was well surprised at my large bowel being in the wrong place! I think I should have had an idea then that I was not quite as well put together as I should have been after that comment!! they did not over gas and I guess they were very gentle as I had not untoward after effects from the procedure. My guts are very delicate I get ulcers from vitC tabs! I have a history of poor healing, I hemorrhaged after both my pregnancies so guess I am a tad weaker in the blood vessel department. But I got through the colonoscopy OK, so maybe if all the Dr.'s are very careful and on the ball about your ongoing medical issues you could maybe go ahead with the procedure. I do not have your neck issues quite as bad as you yet but I have always had some instability I can give myself instant migraine if I put my head in a certain way!! I hope your Dr.'s can work something out meanwhile you take care of yourself, sending you lots of positive energy.

Anna

[Maxine]

Thank you so much for you support---

This is a difficult thing, and in fact valintines day is the day my brother went into the hospital for the last time, and his body was overtaken by the toxins after the cancer spread to his liver. He held out for about 2 years since he found out the cancer spread to his liver. I'm not an openly emotional person, but when I saw him after his mind left him, it was heart wrenching. I almost fell to me knees seeing him like that. I didn't expect it, as I didn't know this could happen with the toxins---------------and he was also very good at hiding how he felt. He was able to communicate normally until Valentines day.

He spent many of his years in the navel service, and was in the hardest battle of his life, and he fougt like the bravest soldier I have ever seen.

I know I need to get this colonoscopy done somehow. My NECK IS THE BIG ISSUE HERE........ . It's really bad right now, and I'm having lots of headaches which is out of my usual pain. I'm having lots of other rpoblems because of it, and it's affecting my breathing even during the day. I can't even walk very far without feeling like collapsing. My husband has a concert on Saturday night, and I have no idea how I'm going to keep it together for the concert. We also have to go tonight to help set up for the concert. I usually help set the tables. Looks like tonight I'll be folding napkins. It really a big mess, more then I can get into here. The good news is that my PCP is trying hard to help me get this cervical/cranial instability (CCI) to be taken seriously locally.

The surgeon doing the colonoscopy is more concerned about my neck, and concerned about the sedation ( intubation would be a problem if the sedation drugs were too much for me), more then hurting my bowel. She uses a pediatric scope, and is one of the best at this. She did my brother's bowel resection, and I have never seen such a perfect incision. She does take my problems seriously, but the concern is the other staff around her trying to understand the scope of my CCI. She is one of the kindest doctors I have ever met outside of Dr. Grubb, and my EDS doctor.

We're still trying..........

Maxine :0)

[erickamcc0523]

I'm glad that you have such wonderful and understanding doctors in your corner... I know you must be stressed with the rest of the health issues, so it's great that you don't have the added stressor of having uncaring doctors. I will be praying for you!

[anna]

Maxine I hope your Dr.'s find some way to temporarily stabilize your neck so you can have the procedure done without neck problems cropping up. Have you been on the US EDS site do they have any ideas that might help? I guess you have tried a non invasive halo etc. You need to find a good engineer to cook you up something!

Take care,

Anna

[Maxine]

Thank you!

Yes, I've been on EDNF site. I joined a while back. I may go to the EDNF anniversary conference in Baltimore. MY EDS doctor (Dr. Brad Tinkle) is the Key Note speaker.

When I talk to the oncologist, I will find out about how we can get this colonoscopy done without sending me into a POTs tail spin, or damaging my neck further. I'm not too worried about damaging the bowel-----but it IS something to watch very carefully with the EDS stuff going on. I have a lot of diverticuli already.

I appreciate your support very much.

Maxine :0)

[joy]

I'm so glad you have understanding docs!

I sent you an private regarding Dr Grubbs, by the way

HUGS!