One patient with glioblastoma still alive nine years later
by David922 on Mon Oct 08, 2012 07:24 PM
A few years back I had a lump in my lower back that the doctors dismissed as a lipoma. After it grew quickly I had an MRI and it was determined to be atypical. A biopsy was inconclusive so I had it removed. Turned out to be very large, 15 cm if I remember correctly but it was confirmed to be a lipoma. I now have another fast growing "lump" deep on other side of back but to point I can feel it. Of course GP says forget about it and don't worry. My sister died at 40 from breast cancer and my Dad has lymphoma AND colon cancer so not worrying is easier said than done. The new one actually hurts sometimes, feels different than last time. I also have an unidentified soft tissue mass below my right kidney in retroperitoneal space that was found during CT scan for kidney stones. Biopsy of it was also not definitive. Waiting six months to rescan that spot to check stability. The doctor is some what suspicious about this spot but it is being watched. Nothing seems to be on any organs other thant a very small spot on my right kidney but it is too small to biopsy, could be a cyst. Hence there are many questions that cause me to be unable to "not worry" about the new fast growing mass.
Anyway, should I move on or push for MRI, CT or even biopsy of the fast growing one on my back? Thanks for advice.
by GrammaKitty on Thu Oct 11, 2012 08:11 AM
Insist on MRI, CT/Scan and a biopsy. It's your life not theirs. It's better to be safe than sorry. I have had 4 kinds of Lymphoma. Treated 4 times, radiated 4 times and almost died 7 times. 1 of them was incurable. Well after last chemo incurable one came back in 3 months. Others are in remission. One year after I finished the 4th chemo I asked for a scan. I prayed the night before and during the scan that God take it away. I've had 2 scans one last March and 1 in August. Both are cancer free. This after 15 yrs. of thinking I was going to die and having all those other cancers and losing both breasts and my underarm. My mouth is messed up, I have a hard time swallowing, can't have sugar, salt, pepper or anything spicy. Narrowed throat and esophagus makes eating certain things difficult. Do you think I care about those problems? No, I am alive and cancer free for now.
I always was in charge of my care. I called the shots. I didn't always do things in the order they wanted, but did them how I wanted. Know everything about all test results. Google, go to Mayo Clinic site, etc. Know what you are talking about and informed enough to make the decisions you may have to make. This is your life and your body.
Let us know what you find out. We, out here, care about you. We've been there.
by David922 on Thu Oct 11, 2012 03:46 PM
Thanks, I appreciate your comments. I did have an ultrasound so waiting to hear it it showed anything. I was watching the screen and saw nothing there so not sure what next step will be. May just have it removed to be done with it.
by jaycc on Mon Oct 15, 2012 02:53 AM
I'm not a doctor, but sure sounds like you should get a MRI.
Also, perhaps you should get a second opinion overall about this masses. If you have any doubt, or concerns about your medical provider, then for your own piece of mind as well as your health, ask another doctor.
As already stated, it is your body, ultimately your health, so work with doctors that are follwing what you want to do.
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