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Just been diagnosed ....Need advice / help - Page 2

post #21 of 37
Hugs, mama. I am sorry you have to go through with this.

My family has had extremely positive experiences with MD Anderson in Houston, and I think out of comfort, I would go there if I ever faced cancer myself. They (specifically Dr. Kantarjian) did wonders for my dad during his six year battle with CML, and though he didn't make it, his doctor there had a key role in developing a treatment that has been very successful with CML patients since then. I think MD Anderson is tops.

However, it sounds like surgery will essential cure you which is wonderful. If you go through the surgery here and have additional problems, I would definitely say run, don't walk, to Houston. But otherwise, you will probably be just fine where you are.

More hugs, mama, and sending positive thoughts your way.
post #22 of 37
If you can afford it, it might be worth at least consulting with MD Anderson if they have the prememinent specialist. MY husband's family has had a lot of run-ins with cancers of various types and his sister traveled (from El Paso though) to Houston for her treatment. The local doctors were planning to do surgery which turned out to be the wrong treatment for her type of lymphoma. MD Anderson ended up being her primary Oncologists and she did her main diagnosis appointments there, did her chemo at a center in El Paso and actually ended up going to Houston for six weeks for her radiation b/c they wanted to do that at MDA. My DH's uncle also traveled for treatment for his rare throat cancer (which he beat) -- his specialist ended up being at Mayo in MN.

Good luck to you! You sound strong...lots of positive thoughts
post #23 of 37
Thread Starter 
Thanks so much for all your advice and support and hugs!!

My biggest major problem is how I would go about finding a #1 specialist? Could I work w/ my DR. on her or a surgeon/oncologists advice?

The MD.Anderson website says that it is a leader in carcinoid tumors, but who is to know? It certainly looks great.

I also thank the pp's that mentioned about my DR. and the positives that she has for being young.It reassures me that she is good. Infact she on my initial visit to her about my complaint of stomach gassy pains, she did give me a zantac Rx, but also ordered a CT scan, which in hindsight she says that it was an aggresive way to treat a gassy stomach. She has also been forward thinking and aggressive in trying to diagnose me prior to the biopsy diagnosis, so much so that a the biopsy Dr. at the hospital mentioned how on the ball she was.

As far as changes in diet go, what could anyone recommend, like websites, books etc.

Thanks for now Jasmine
post #24 of 37
Originally Posted by rabrog View Post

However, also mention this Dr. Yao to your doctor and ask if she can contact him to review your records.
ITA. A second opinion is always a good idea. You will be in my prayers
post #25 of 37
I have no advice or experience but I want to add my wishes for your full and speedy recovery (((HUGS)))
post #26 of 37
Hi Jasmine,

I was diagnosed with lung cancer (hereditary, most likely) in September. My advice to you is that while your primary care doctor is good, you must see more than one oncologist. The oncologist will be the one you talk to, the one who will be in charge of your treatment, not your PCP.

Definitely get a second opinion, especially because you have a rare condition. Perhaps you should consider going to M.D. Anderson in Houston. They are the number one cancer treatment center in the country. I went there for my second opinion and they treated me very, very well. I chose to pursue treatment in my home state (at the third best cancer treatment center, Johns Hopkins) since the opinions were almost exactly the same. Because you have a rare diagnosis, you may be able to participate in a clinical trial (something at NIH, perhaps). Also, some cancer organizations help with expenses (like parking) so look into that!

If you want more information I would be glad to try to help you out. Please PM me. Cancer is big scary stuff and you are at the very beginning of your journey.

Best, Sugarlumpkin

Travel for medical reasons is tax deductible! Look into it!

Edited to add: surgery will not "cure" you. Surgery, if that is the step that is best for your treatment, will likely be the first step. Surgery was my first step. I am now doing chemotherapy.
post #27 of 37
If I were you, I would definately check out MD Anderson. I have worked in clinical cancer research for 9 years, developing new medications with the leading oncologists around the world. There are definate differences among institutions and the larger, refined teaching hospitals often have the latest technologies and are abreast of the newest developments in surgical, radiological, pharmacological, and nutritional therapies.

Best of luck to you. PS I worked with Dr. Kantarjian and agree he is one of the warmest, humblest, and brightest oncologists in the world. (although he is not a carcinoid specialist).
post #28 of 37
Firstly to you. Be strong and definitely research all avenues.

I agree with pp's that have suggested getting a 2nd opinion. I also agree that you should contact the specialist in Houston and see about reviewing your records.

My dh and I have an acquaintence who's son was diagnosed with a rare form of childhood cancer called neuroblastoma. He is being seen by local docs and they have had all of his records reviewed and are in constant contact with specialists in Chicago and Philadelphia. It can be done.

You should also consider the dietary option like a pp suggested, and even alternative healings like acupuncture and healing touch.

will be keeping you in my thoughts & prayers.: :
post #29 of 37
Cancer sucks. I would definitely travel to a specialist, if that will get you better care. NOBODY cares more about your health than YOU! Remember that.

You can probably ask some oncologists (just call around and leave messages with their nurses; you may not get to speak to the DRs, but the nurses will relay the info), who the best DR is with carcinoid tumors. My FIL is a dermatologist, and he can tell you who the best derms in the country are for various sub-specialties. So, I think any oncologist worth their salt could do the same.

Large, teaching hospitals usually have the best staff, equipment, treatment options, etc.
post #30 of 37
Originally Posted by zoebird View Post

Personally, i tend to believe that younger doctors are very good choices. they tend to be more "up" on cutting edge treatments and technologies because of their proximinty to still being in school. so, at the most basic level, i like younger doctors overall.

This has been my experience as well. I have some medical issues myself, and the younger doctors are always the ones who know the latest treatments/research/etc. They are a little gung ho sometimes, but most of the older doctors I've had go by the book - which isn't always the best course of action when you are dealing with medical issues. Sometimes you need to think outside of the box a bit and not just go by what you've read in a textbook. Also the older doctors seem to not keep up on the newer research as much (from what I've experienced anyway) and they are less likely to try alternative therapies than younger doctors.

If it hasn't spread it does seem like surgery is probably the best way to go. I hope that everything turns out ok, I'll say some prayers for you.
post #31 of 37
I second all suggestions to contact MD Anderson one way or another. A very good friend of mine was diagnosed with leukemia and was able to be worked into a clinical trial down there. It was fantastic treatment. He spent a few weeks there and was thrilled with his care.

post #32 of 37
Sending you positive healing thoughts...
post #33 of 37
I agree with going where the experts are. My grandpa was really sick and nobody could figure it out. They finally went to the Mayo clinic and within a couple days of getting there, they knew exactly what was wrong and were starting treatment.

s and much peace to you.
post #34 of 37
Wow. What a bomb to have dropped on you! I am so sorry that you have to go through this. I know nothing about that type of cancer, but I did want to offer you hugs. Good luck and lots of positive :
post #35 of 37
: Prayers for you. My mom was dianosed with colon cancer in O6, she's also in RI.
Her primary doc wasn't as on the ball at first and it took until she was stage 3 and in severe pain before anyone did a few tests and found the cancer. She seemed to like her oncologist. She is in remission and doing very well after surgery and chemo. It's not the same cancer but it's in the same general area of the body. I can get the name of her Oncologist if you want me too. Best of luck.
post #36 of 37
There's a site called Crazy Sexy Cancer. I don't know how to do links, but if you google that it will come up. I actually got the link from MDC. She's where I would go to for all dietary and alternative information. She's a filmmaker who was diagnosed with a rare cancer in her 30s and did a documentary of her experience. That's the name of her video and her site. The video aired on The Learning Channel in the past few months. I haven't had personal experience with cancer at this point, but her documentary is pretty amazing for any of us searching for healing. Her site is pretty extreme (sometimes irritating, I find), but overall she has an amazing heart and a TON of information. Warning, though; she goes all the way--raw, vegan diet; colonics; mind/body--everything. I admire her, but I don't know if I could go that far. Best of luck!!
post #37 of 37
Originally Posted by zoebird View Post

i'm sorry about your diagnosis.

Personally, i tend to believe that younger doctors are very good choices. they tend to be more "up" on cutting edge treatments and technologies because of their proximinty to still being in school. so, at the most basic level, i like younger doctors overall.

they can be a bit too gung ho, though, as well.

i would contact the specialist that you found and ask for a consultation. many will allow you to send your charts and information to them, and then make a recommendation. you might also ask your doctor to make this connection--as it will give her someone to rely on for advice and such.

good luck with everything!
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