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new to csn - mpnst located in sacrum


   My name is Ed living in the uk and I have recently been diagnosed with a Malignenet Peripheral Nerve Sheath Tumour to my sacrum area - between s1 - s3 which is quite sizeable.

It is believed to be aprox 13 x 14 cm.

At first the assumption was the mass might be a chordoma but after a couple very painful ct guided biopsy and an open biopsy the subsequent tissue sample was made up of nerve like tissue.

Fortunately they said the cancer cells were classified as low grade and unlikely to spread.

Colon CA with mets here, there, and everywhere

My husband was diagnosed with Colon CA with mets to liver, lung.  He just completed his 4th round of chemo and for the first time is not knocked out on day 4, 5 & 6.  I am leary of rejoicing in this because I just saw that his CEA crept up a little.  His level was around 1550 before treatment starated, came down to about 850 after the first treatment, down only 30pt after the second but up 50pt after the third treatment.  Does anyone know if this is significant?  I hate to ask his doctor questions with my husband present.  His attitude is so great, he is very positive, I don't want to a

Post Gastrectomy Nutrition

My wife has had stomach cancer since 8/12/15.  She had five months chemo, then had her entire stomach removed.  She has been fed thru a "J" tube since then.  That is no longer possible and the tube has been removed.  Can anyone give me any tips on how to help her eat enough calories to offset the loss of 1500 calories from the J tube removal, since she can only hold a few bites at a time.  What has your experience been?  Dmoore1118

Pancoast tumour and me.

Hi, I live in London UK, I am 68 years young and have been in remission for eight years after having a Pancoast tumour, three ribs, chest wall and part of my pancreas removed. |I had radical surgery to remove the tumour etc, I refused chemotherapy and have used natural remedies since. I am in quite good health, naturally I have problems caused by the surgery. That is the one of the reasons I am writing this blog. Is there anyone else out there who has had their ribs removed bacause I would like to share how they have overcome this problem.

Lymph pain in armpit / breast cancer survivor/bartonella infection

Have been seeing Dr's for redness, swelling and drainage of fluid on affected arm. This has been going on for over a month. Today noticed burning pain radiating from same armpit that 7 lymph nodes were removed from during lumpectomy.  Need recommendations or information for diagnosis.

I have been diagnosed in 2016 with Bartonella from a tick bite.

Thank you for direction. 




Hi I have had my surgery 3 weeks ago, medullablastoma im. 32 yo female surgery went really well got it all removed now are being told to start radiotherapy and chemo therapy which I’m scared about. They are asking me to remove my eggs also just in case after treatment I decide I want to have kids is there anyone that can share options with me please thankyou

Body Pain and fatigue and just plain scared

I am a 5 year survivor of IDC breast cancer with an ocotype of 28 and treatment of bilateral mastectomy and cytoxin/taxotere for chemo and 5 years of Tomoxafin. Today I am in remission of stage 3 Large Bcell Non hodgkins lymphoma with 6 doses of RCHOP that only shrunk my tumor in half and then 30 rounds of radiation to take care of a large messentary mass in upper abdomen. I just had my first PET scan since finishing treatment and all went well. I continue to have fatigue and I continue to have joint pain in ankles, knees, hips, lower back, elbows and hands.

Shocked916's picture

7 days

You know how, when you are having a bad day,  everything gets worse? That's my week since being diagnosed. And I'm totally air-headed now.  I can't communicate effectively, i forget what I'm saying as I'm saying it, plus I lost my phone yesterday. This causes more stress because I start wondering if it's traveled to my brain.  Logically,  I know it's all anxiety,  but the thought still keeps popping into my head. And the pressure to pretend like it's all okay!  I have more stress over worrying about my loved ones, than the diagnosis.

tcarr95's picture

New to this

I went to the doctor thinking i had a hernia come home know I hade cancer a rare kind on top of it called duodenal. I'll be 42 in few days and am wondering what just happen ive never been sick a day in my life and that's all I am now . But I am a fighter and this cancer is going to get one


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