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Rare and Other Cancers

Posts: 2
Joined: Sep 2016

Very Hot lymph node in abdomen ( retroperitoneal area )

Have now had three CT/PET scans ( 5/16,9/16, 2/17 ) showing an intensely fdg avid SMS axis lymph node 0.06 x 1.1 cm in size. First scan had SUV of 31.8 and second was 52.7 and third 33.Size has remained same and no other areas of active fog uptake. Too deep in abdomen area for biopsy and high risk surgery to remove. CT/Pet scans were done due to squamous cell carcinoma in scalp which required Mohs surgery followed by free flap skin graft. Had Leiomyosarcoma of scalp in this same area in 2000 which required two operations and radiation therapy. 

MemphisTn's picture
Posts: 42
Joined: Sep 2016

Adenoid Cystic Carcinoma

Just wanted to poke my head into this forum, I participate in the head and neck forum since thats where my cancer was found. But, it is a rare cancer, so, just wanted to put a post here for anyone that may pass through looking for something on adenoid cystic.


Much Love,


Posts: 2
Joined: Sep 2016

Primary Peritoneal Mesothelioma

just received this result from the Kaiser oncologist regarding the PET Scan Results via email which does not explain anything in plain english such as the stage of the cancer.  The oncologist said the only 2 options for treatment are either a clinical trial recruiting advanced peritioneal malignant mesothelioma or undergoing chemotherapy treatment using 2 Chemo Drugs.  She did not include surgery as an option. Does this mean the cancer is probably stage III or IV?  Below is the PET Scan results copied from the oncologist email:

Posts: 1
Joined: Sep 2016


Good day all,

abrub's picture
Posts: 2037
Joined: Mar 2010

Appendix Cancer

Dear Friends,

I have always gladly made myself available to help others with appendix cancer.  However, for the next few weeks at least, I won't be answering emails and such, as I have to take care of myself.

I've had a recurrence after 9 years of NED, and am headed to Sloan Kettering for more surgery in a few days.  My anticipated stay is several weeks due to the complexity of the surgery.

Thus, much as I love to help others find the appropriate care, at this point I must take care of myself first.

Posts: 1
Joined: Aug 2016

Non Differential Carcinoma

My Sad story begins, February 2016, as my moms thought processing was played with, her primary doctor did a ct scan and found a baseball sized metasticized tumor in her brain, surgery came and went, but not only did she have a metasticized tumor in her brain, she also had 2 supraclavicular and 3 in her chest....

Posts: 2
Joined: Aug 2016

Cervical Cancer Survivor, if you call it that.

My name is Tina and I am 44 years old.  I have been trying to get some information on what I am going through.

I was diagnosised with cervical cancer back in 2013 but I had all the symptoms since 1990 and the first pap smear was obnormal.  I was turned away by every doctor and E.R. would just leave me out in the waiting (was marked as a drug seeking person).  I was a single mom and if I could work due to the pain and the horrible periods (those were like a faucet and not once a month, happened whenever), the job never offered insurance.

Odeal59's picture
Posts: 1
Joined: Jun 2016

Myelodysplastic Syndrome or MDS

My husband, Rick, was diagnosed with myelodysplastic syndrome (cancer) almost three weeks ago. It is hard to wrap my mind around it. He has RAEB-1, with trilineage dsyplasia. For a long time, we have dealt with a blood disorder, thrombocytosis - a myelproliferative disorder. He has way too many platelets if not controlled by Hydroxurea. Well, he is off the that medication now, and has had six days of Vidaza instead. We are familiar with the inside of a hematology/oncology doctors office.

Posts: 1
Joined: Jun 2016

cancer in the omentum

what to expect, meeting with oncologist on wednesday

Posts: 4
Joined: Jun 2016

HepatoSplenic Lymphoma


I am new to this site.  Just wondering if anyone else has this particular or similar kind of monkey on their back. 

Not trying to be funny but I suppose humour is good...or so I have been told.  Anyway my liver is spiking along with the rest of my bloodwork except my hemoglobins, yay.   

I do not even know how to post tis but I will give it a whirl




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