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Rare and Other Cancers

kisherwood's picture
Posts: 1
Joined: Jun 2017

Olfactory Neuroblastoma


My husband just had surgery to remove a polyp in his nose/sinuses. It was a tumor originating from the Olfactory nerve cells. The biopsy could not confirm whether it was benign or cancerous. He is scheduled for an MRI this week. The doctor said there will need to be more surgery to make sure all of the tumor was removed. What do we do now? Should we request another opinion of the biopsy. Will the MRI tell us if it is cancerous or not. I am concerned it will not be treated aggressively enough if they can't tell if it is cancer or not. Did anyone else have this experience?

Posts: 6
Joined: Jun 2017

Multiple primary cancers

Hello, I am waiting to hear the confirmation (or not, hopefully!) of my 4th primary cancer. In 2004 I had thyroid, 2008 breast, 2011 endometrium and now during CT scan control, a mass in the left kidney, first spotted last year, has grown.

Now this... seems to be terrible luck, to say the least. I feel also very lonely, with no other stories like mine to relate to.

On the bright side, the previous ones were treated successfuly (thyrioidectomy and iodine therapy; bilateral mastectomy and chemotherapy; histerectomy).

Posts: 1
Joined: Jun 2017

Gallbladder cancer stage 4

Hi everyone,

I am Thishanth from Switzerland. I have read your comments on this cancer website. My mother has been diagnosed for a stage 4b gallbladder cancer. Here the doctors say that there is no other options than palliative one (chemotherapy: Gemcitabin/Cisplatin).

First, I wanted the doctors to remove the gallbladder or somehow to do a surgery, but they refused telling me that there was no use. I read on the website that there were lots of survivors of this kind of cancer who did the surgeries.

Posts: 3
Joined: Jun 2017

Mesonephric Endometiral Adenocarcinoma

I am wondering if anyone has had or know someone that had Endometrial Adenocarcinoma?  I am trying to find a survivor of this very rare cancer, but so far I have not had any success.  I was diagnosed in August 2015 with this very rare cancer.  I was misdiagnosed for 6 months from various doctors treating for a UTI even though my cultures were normal.  This particular cancer mimics a UTI, the burning when you pee, pain, and lastly spotting in urine. It wasn't until I finally changed GYN doctors again, and this doctor did an endometrial biopsy.

Posts: 2
Joined: Apr 2017

Angiosarcoma of the heart

Hi everyone. 

On April 1st my mom found out she had cancer for the 3rd time

 Shortly after we found out she had a primary angiosarcoma with mets to the liver. Unfortunately,  she died April 27th, and I got custody of my little bother. I am having a super hard time dealing with this, and was wondering if someone has went through this and needed to talk. 

Its extremely hard to find anything out about this cancer,  so i figured I would create a board to help others out also. 

Thank you.

Posts: 2
Joined: May 2017

NET - Hoxsey Tonic & Rigvir Immunotherapy

Has anyone here had any success using Hoxsey Tonic or Rigvir Immunotherapy for the treatment of NETs during the critical stages.  I hope there are some positive stories to share. Thank you very much.

Posts: 4
Joined: Mar 2017

bartholin gland carcinoma

If anyone has this diagnosis please let me know. We are a rare breed and if anyone had vaginal estrogen prior to diagnosis, Id love to hear from you.

Posts: 2
Joined: May 2017

Hoxsey Tonic / Rigvir Immunotherapy / Essiac Tea

Urgently reaching out to anyone that has personal experience of using these alternatives to fight cancer; Hoxsey Tonic / Rigvir Immunotherapy / Essiac tea.  
Particulary in relation to neuroendocrine carcinoid during critical stages.  At this stage I am interested in honest personal stories, as time is of the essence. Please do PM me. Thank you.


Posts: 2
Joined: Apr 2017

Blood Cancer - Polycthemia Vera


I'm a 51 y/o female just diagnosed with polycthemia vera. Was told by the doctor this is most commonly found in 60+ y/o men. But doing research I found out ANYONE can develop this. Does anyone else have this rare blood cancer who can tell me how they manage & live with this rare cancer? Any information provided would be most grateful. 

Pattie R
Posts: 5
Joined: Mar 2017

Leiomyosarcoma of the Inferior Vena Cava

I have just been diagnosed with Leiomyosarcoma of the Inferior Vena Cava (IVC). The MRI indicated the mass has invaded and occluded the IVC. There is no evidence of metastatic disease. Does anyone have experience with this type of rare cancer? 


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