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Rare and Other Cancers

Posts: 1
Joined: Nov 2016

Olfactory neuroblastnoma

My son is 52. He was diagnosed with olfactory neuroblatnoma in May 2016 And had an operation to remove the tumor through the nasal cavity. We knew it was serious but when he came home afterward he was really well and confident about the future. He started radio therapy 3 weeks later and even after 4 of the 6 weeks of the daily treatment he was fine. From that time he has just gone downhill. He is not ill but so very low and so tired he can hardly do more than work a few hours, eat with a lot of encouragement, and sleep. 

Posts: 1
Joined: Nov 2016

My friends mother is confirmed with Pancreatic cancer

Hello Everyone hope everyone is doing good and happy with your life. Here the case is my friends mother is confirmed with pancreatic cancer and its in advanced stage. Please let me know if there is any cure/treatment is available it would be of great help in saving a mother to a family.

Thank you.

Posts: 1
Joined: Oct 2016

Whipple surgery

My husband (64) has had symptoms of pancreatic cancer for several months. After having 2 endoscopies with negative biopsy results, his dr has him scheduled for Whipple surgery on Tuesday. He is an experienced surgeon using the DaVinci robotic, and tells us that even though it doesn't look like pancreatic cancer now....it will eventually turn into cancer.  I have read so much about the post surgery experiences, and I'm now scared to death for him.   Can anyone offer some words of advise or encouragement?  Thanks in advance.

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: 41
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: 1896
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.


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