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Paraganglioma

agueldner
Posts: 2
Joined: Oct 2011

My husband had a tumor near his liver and kidney.. they removed it back in june.. they said it was not cancer but my husband satrted feeling so much better. No more night sweats, throwing up, or abdominal pain. 5 weeks post surgery he started getting all the symptoms again. He went back into see the surgeon and they ordered another CT.. within 6 weeks post surgery, he developed another tumor in the same region, this time against the vena cava. This tumor was quadruple the size of the last one. He was referred to San Antonio to a speciaty surgeon and when reviewed past scans, surgery and biopsies on last tumor and scan of current tumor he decided my husband needed to be referred to an oncologist. We met with the oncologist that diagonsed him with paraganglioma and it being cancer.. they have never done any scans of his head nor chest so this next week he is having a full body CT and meeting with a genetic counselor to be tested. He also has to have a MIBG scan.. the doctor told him there was no chemo nor radiation to cure this type of cancer only surgery and it was major. From reading previous post I am more confused then ever.. and scared!! Can someone please give me a little more info on what to expect? We have children as well.. thank you!!

Prospector
Posts: 6
Joined: Aug 2011

I have been diagnosed with Carcinoid (neuroendocrine tumors) & the first thing that becomes very obvious is most oncologists do not know how to treat this type of cancer. It does not respond to most chemo or radiation. In the past all they knew was try to locate the primary and remove it. Nothing wrong with removing tumors but if they do nothing to aid them not returning, you only gain a short time. I personally intend to have PRRT then if any tumors remain(usually at very least they shrink and are more easily removed)I will have them removed. PRRT with Lu-177 can be repeated up to an average of 7 times depending on dosage & type used. The results have averaged 40 months to progression, a small percent have total remission (tumors do not return) You must be tested with an Octeoscan or preferably a GA-68 scan to check if tumor receptor uptake is sufficient for this treatment to be effective. This treatment using Lu-177 and/or Y-90 (depends on tumor size & location which one they use)takes about 4 hrs to administer the pre-therapy and usually less than a half hour to administer the actual octreotide labeled with the isotope. Minimally invasive, administered thru an IV in the arm. Some patients require additional treatments to be successful. This has been done in Europe for over 10yrs now, and finally is in a clinical trial in Houston. My personal opinion, Medical Centers whose primary income depends on surgery, chemo or radiation treatments have a hard time accepting something they do not have. A good example, The NANETS annual symposium is in Minneapolis next week. 9,000 invitations were sent out, most of those to local and regional doctors -
gastroenterologists, oncologists, etc.

Here is this international conference offering ongoing medical credits, with the top specialists in the world, and .. hardly any doctors from Minnesota are attending. This is why we are undiagnosed and misdiagnosed for years and years.
I would certainly reccomend anyone who is diagnosed with a NET to contact one of the few specialists in the US. If you are in TX, the closest one would be in Kenner, La. Dr. Woltering @ Lsu. Another site I have found very helpful for info: CARCINOID@LISTSERV.ACOR.ORG another PRRTINFO.org

As one very experienced gentleman told me "PRRT is not a magic bullet", but if your tumors test postive for receptor uptake this treatment shows as good results as any and in many cases much better than previous treatments.
I hope I understood your question and helped to answer it. Good luck to you and your family.
Ken

roypalmeto
Posts: 4
Joined: Dec 2011

I hope you are doing well at this point, If you are interested there are many ways of looking at cancer. In most cases cancers are caused by what we put into our bodies. Our Foods. yes. You must look for foods that are healing and at the same time look for foods that harm...Know that foods that are good for cancer are brockley, brussell sprouts, cabbage, beets, carrots, and many more. Know also that Flax seed oil and cottage cheese will be good to learn about. See Dr. Budwigs protocal. All that you want and need know is available for you to learn about. There are 460 listed cures for cancer , take your pick

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