Cancer Community

Hi WorriedWort77,

If you don't trust in your doctor then it might be best for you to get a second opinion. Unfortunately there is not doctor on this message board that can read your results, nor can anyone diagnose you over the internet.

If your doctor is not concerned that's a good thing, but if it's worrying you, then get a second opinion. Bring your results and medical records for another doc to see.
Best of luck and health to you!

YOU NEED TO GET A SECOND OPINION NOW! I HAVE A FREIND THAT WAS TOLD THE SAME THING FOR HIS CARCINOID......"IT WAS NOT CANCER", "COME BACK IN A YEAR"....
HE IS NOW IN GERMANY DOING RADIATION THERAPY TO EXTEND HIS LIFE.....THE "NON CANCER" GREW AND SENT METS THROUGHOUT HIS BODY!

DEFEND YOUSELF AND DONT ACT LIKE A DEER IN HEADLIGHTS. FIND THE BEST ONCOLOGIST IN TOWN AND SET UP AN APPOINTMENT......NOW

YOU NEED TO GET A SECOND OPINION ASAP, preferably with a doctor/facility that is VERY experienced with brain cancer. If you're still uneasy, get a third opinion. Not to scare you, but I want to tell you my story. I was experiencing severe pain in my back/shoulder area, stabbing pain, and pain shooting down my right arm into my hand. I saw several different doctors over a 5 year period, had many tests, but was constantly told there was nothing there. Then in 2005 an xray showed a shadow near my lung and spine. After a biopsy, pathologists said it was benign. Surgeons said it had to come out. I had it removed 12/2005 at a different facility, a university/teaching hospital. Guess what - a biopsy performed after the tumor was removed showed it was a very cancer! An oncologist at this facility, along with my 2 surgeons told me no follow up treatment was called for (i.e. radiation or chemo). 6 months later the tumor had returned and was deemed inoperable/incurable. I immediately found a different oncologist, at another university/teaching facility/cancer center, with experience with my type of cancer. Guess what, I SHOULD have had radiation AND chemo after my surgery. I was treated unsuccessfully with radiation. My oncologist wanted to try chemo. I sought advice from another oncologist via email, based on some research he had done involving my cancer type at a leading cancer center. He advised that I travel to his cancer center to see him and another oncologist for another opinion. I followed his advise. My prognosis was not good, but all three doctors were recommending the same chemo regimen. I had chemo for 13 months, chemo for 3 weeks, off 1. A lot of chemo! This was in 2006-2007. But here I am, 2010 with no evidence of disease. They can't say "cured", can't definitively explain the disappearance of the cancer. As for me and my family and friends, we call it a MIRACLE. Every day I have is a miracle and I will appreciate it for as long as I have it. However, I strongly believe God helps those who help themselves and had I not pursued 2nd and 3rd opinions, I probably wouldn't be here today. AND, had I pursued additional opinions even when I got answers I liked (such as the "benign" biopsy, and "no additional treatment needed"), I could have saved myself a lot of pain, stress etc. GOOD LUCK!

Thanks for the replies. I understand about the second opinion. I had a lumbar puncture yesterday and I am going in for a full PET scan on Tuesday so the doctors can try to figure all of this out. I am hoping for no cancer. However, if it is the PET scan should help catch it early and give me the best chance to face whatever is going on with my body.

My follow up MRI has been moved up to January. My new neurologist did another MRI with contrast and my lesion did not enhance. On the new MRI they found a microadema (spelling?) on my pituitary area. The neurologist after examining me ordered the spinal tap due to MS symptoms. She seems to be very smart and I like the fact that she is aggressive in trying to figure everything out. The spinal tap was not fun, but if it helps to figure out my situation it was well worth it. I will keep everyone updated. Thank you for your replies.

To WW77,

I hope all is well with you at this point. Follow-up is wise and second opinions are always a good idea if you have concerns.

Generally,
When there is a mass (anywhere) that is not causing any symptoms, there is decreased need for concern. This is especially true when there are no abnormal lab tests, history of similar disease, or related diseases in the family. The reason a mass is monitored, however, is to make sure that it is not changing. When a mass does not change over time, it is considered stable and that is reassuring. The more time that goes by without changes in the mass or presence of symptoms, the more reassuring. Doctors may continue to check periodically for change, but more important are regular checkups and physical exams to assess for new symptoms.

Demyelinating refers to a process where the fatty cells that line nerve fibers are being destroyed. The most common disease involving demyelination in the brain is multiple sclerosis, an inflammatory disease. Symptoms of MS vary between individuals and between episodes. Lesions in MS usually come and go, so initial suspicion of that disease in particular would require later evaluation for change (multiple lesions will often appear in different parts of the brain and tend to go away after an episode). MS is usually progressive with each recurring episode a little worse than the one before, but some people with this disease can function very well.

In your update you mentioned a pituitary adenoma? The pituitary is a small gland toward the front of the brain that is responsible for tons of hormone regulation in the body. Sometimes a pituitary adenoma can secrete extra hormones of various types that could lead to a host of different symptoms. If the tumor becomes large enough, it can press on nerves that are involved in sight and lead to a loss of vision or it can press on surrounding cells that make hormones and cause the secretion of hormones to decrease. Smaller tends to be be better, and of course, no change over time and no development of symptoms is a good thing.

Anyone should contact a physician if any new neurological symptoms develop (but especially someone with a known lesion in the brain). Examples of neurological symptoms include difficulty moving limbs or facial muscles, difficulty walking, difficulty maintaining balance, change in ability to speak, visual loss, doubled or blurry vision, headaches, loss of feeling sensation anywhere on the body, changes in ability to urinate or pass stool, or decreased ability to focus, think, or remember things.

Some possible pituitary symptoms include changes in weight, excessive sweating, difficulty tolerating either heat or cold, changes in hair texture, loss of hair or increase in facial hair, fatigue, weakness, sleep dysfunction, sexual dysfunction, abnormal expression of milk from breast tissue (even men), increased or decreased bleeding in menstruation (women), or exaggerated growth of facial bones. Also, there is the possibility of partial vision loss or "narrowed vision." Blood sugar and blood pressure are increased in some cases.

Even if new symptoms go away with time, the affected individual must see a doctor or visit the ER because these symptoms are indication of many possible neurological diseases or injuries, and cessation of symptoms does not mean there is no problem.

God bless, and all the best to you on your journey,

Nej

I would be proactive and start treatment soon to change your life, have you read about Gerson's therapy? Take a look

http://gerson.org/case/case0.php?case=9