DR. WEST HAS RECOMMENDED

jrrees2006
0 Recommendations

Today, I emailed Dr. Jack West a brief story on my case, I attached my two biopsy reports from Georgetown and Johns Hopkins and to my surprise, he wrote back saying two things and they were:

1. That he recommended that I get another consult from Dr. Travis at the Memorial Sloan Kettering Cancer Center because he is one of the best pathologists in the country on this matter as Dr. West feels that somebody is right or both are wrong and the lack of growth of my primary tumor before its removal still makes the possibility its is all a carcinoid tumor(s) possible; and

2. That since both GUH and JH agreed that there was no lymph node involvement and a lack of any indication of spreading that if it turns out to be SCLC then I may or may not need adjuvent therapy.

The best case scenario for LC is LIMITED SCLC with no lymph node involvement or spread at the time of surgery.

I think it was so nice of Dr. West to take the time to write back!

11 replies

texatl

Very encouraging news. You've been through so much. Hopefully there will be more positive news coming from the new doctors.

jerseydebbie

That's the beauty and mystery of Dr. West. Sometimes he is forthright in his approach and gives you the actual advice or facts that you are looking for.

On the other hand, he also has a tendency to carefully choose his words and not put himself on the line, so to speak.

However, I have enjoyed his forum and continue to use it as a tool of information.

He's a good guy, even though at times he speaks out both sides of his mouth.

2mmama

He has answered my questions NUMEROUS times when no one else would. I feel bleesed to have him available to people in our position.

Blessings, Christi

lyaeger

Hi Jonathan,

I agree. As soon as I saw your last post I thought that it did not add up (again). SCLC is fast-growing and you said your tumor held steady for 3 years. And the determination between carcinoid and SCLC and LCNEC is done based upon your Ki-67 reading. I haven't seen your second report but the first one said nothing about that reading. Was there a Ki-67 value given on your second pathology report? It needs to be over 50% to be either SCLC or LCNEC. Otherwise it is typical or atypical carcinoid or a mixture of both (that is my case).

Once again I recommend you see one of the TOP carcinoid specialists. You can contact me if you want to know who they are. There are only a handful in the entire world who are considered experts in lung carcinoids because they are so rare.

Linda

jrrees2006

Lyaeger,

My Johns Hopkins report was 1 1/4 pages unlike the Georgetown one that was 7 pages and no Ki-67 was reported done by either institutions.

cad1223

Dr. West was a blessing to me and all my questions when my dad was sick. He never hesitated to give his thoughts, however I would never expect him to give actual medical advice/diagnosis information because my dad was not his patient. But I did appreciate any thoughts he had.

I'm glad he was able to help you, too, JR.

Cheryl

Pbishop619

I have been very fortunate to have Dr. West answer many question I have had regarding problems I had when I was taking Tarceva - he was a Godsend. I wish you the best.

Pamee

dands

This is my first time posting here. I would like to know if anyone here knows if adeno carcinoma is considered to be a carcinoid tumor? I do not know much about my husbands lung cancer except that it was in his left upper lung and it was NSC with staging of 11b and he had some hilar lymphnode involvement. A thorasic surgeon at Barnes Jewish hospital removed his upper left lung last April 30th and after the operation he developed atrial fibrillation almost immediately. He chose not to do chemo because he had lived through that with his mother and sister and seen how sick they became and how bad their quality of life was and that neither survived after the treatments. He wants to feel well as long as possible. Since his surgery he has felt fine and has been on 2 heart meds for the atrial fib and coumadin for blood thinner, which his md is constantly changing the dose of even though he has excellent blood pressure and ekgs. Next week we go for his 3 month ct scan, praying all goes well. His md wants him to have a colonoscopy this month but the small country hospital he is affliated with wants to put him under for it so i am hoping we can find somewhere to have it done that has more experience with it due to his heart problems and can do the procedure without putting him under. My sister had it done this way. I am concerned about stress to his heart. Sorry so long, please respond as soon as possible.

CKP

I can't speak to all of your concerns, but I do know that chemo isn't nearly as bad as it used to be. My father decided not to seek treatment because of what my mother had gone through 20 years before. My Dad lasted a very short while.

I went through chemo (carbo and taxol) after surgery, and while I had some side effects, mostly fatigue, it wasn't that bad. After a few days I felt fine again, able to go about my day as usual. There isn't the nausea associated with chemo of the "olden days" because the doctors will give a medicine beforehand that alleviates the feeling. That was almost three years ago, and I have thankfully been NED since then.

The only other thing I can add is I also developed a heart problem after surgery, although the surgeon told me it wasn't from the surgery. It presented as atrial fib and turned out to be a problem with the aortic valve. I smoked previously so I suppose it could also be from that, and was just circumstancial in the timing...who knows?

I hope things go well with the scan!
Cindy

dands

Thankyou ckp for answering my post. How are your doctors treating your heart problem? How did you find out it was not atrial fib but your aortic valve? The onc that my husband is seeing told him that he only had a couple weeks after his surgery to make the decision to have the chemo. After that he said it would be too late to change his mind. I do not understand why that was the case. But, hubby decided he would take his chances without chemo, i pray he didn't make the wrong decision.

CKP

I had an atrial fib initially. When I told the onc. I was in the ER with it, he suggested I see a cardiologist. They did an echocardiogram and saw the valve. The first doctor wanted to do surgery ASAP, after the chemo. I thought if I was going to have surgery, it wasn't going to be in KY, so I went to an excellent heart care hospital across the river in OH. That doctor said it was mild to moderate at best, not "severe" as the other doctor said. I have an echocardiogram every year. Until there is some change I do nothing.

As far as having to decide about chemo in a couple of weeks, I think perhaps you should get a second opinion. I don't understand why that wouldn't be an option anymore.

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