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Post by girlo72 on Apr 19, 2014 11:48:03 GMT -6
Hi, 3 months ago I was diagnosed with a mass/tumor near or attached to my spine lumbar /thoracic area. I already have a neurosurgeon but due to scheduling appts have been postponed. They have referred me to an oncologist/hematologist. I was given some information about spinal tumors and told to familiarize myself with the many different possibilities and terms etc... The feelings I have had feel like roller coaster ride. I'm hoping with more definite diagnosis these will ease. Did anyone else feel this way? I have only been told that cancerous or not it may be catastrophic . Yes I'm scared, overwhelmed angry every emotion at any given time. I had carcinoma in situ 13 years ago (cervical cancer) stage zero. No biopsy yet. Just needed a safe place to talk and from others who know.
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Post by funnywalk on Apr 22, 2014 15:15:42 GMT -6
Hi girlo, it's tough homework having to read stuff about what you may or may not have. What country are you in? In the UK you would have access to a Macmillan nurse who is there to help you through this horrible initial stage. You need support. Have you a good GP? Yes, it may be catastrohpic, but it may end up being a mild nuisance that curtails your physical activities a bit. Be hopeful and come back on here when you know what;s going on. Blessings and love. FW
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Post by pringleman on Apr 23, 2014 1:33:40 GMT -6
Hi Girlo, Sorry to hear of your blight. I think the main thing is to be positive. I know this is hard but at least try not and think of what may happen. It has not happened yet and it may not be too bad after all. It is hard that they are delaying you. Is there anyway of pushing things ahead? PG
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Post by girlo72 on Apr 23, 2014 13:26:18 GMT -6
Oncology yesterday, more blood work, full body scans scheduled for Tuesday. Oncology is optimistic it isn't attached to bone or nerves just close to spine. Great news. It's a snake like tumor 1.74 cm x 3.25cm x 7.25 cm. exact location will be seen on new scans and then doc and colleagues will decide if biopsy it. It appears to be removable. Not really explained to me is the part of new blood work to see if I clot properly. So not spinal tumor exactly but just near they believe , which is opposite of first opinion.
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Post by pringleman on Apr 23, 2014 19:52:19 GMT -6
That is great news. Have they done a MRI?
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Post by girlo72 on Apr 24, 2014 8:33:08 GMT -6
Yes MRI done in beginning of march. It's been confusing because my GP was freaking and the first surgeon said too risky for him to biopsy and couldn't help me. His office cancelled appt with out physically seeing me based on MRI. So took all records and scans to my neuro. Then in mail received oncology referral . So oncologist and team only knew a little more than what I did. Oncologist said he wants to look to see if any more of them in body. He and his team want answers, said usually you just don't develope these for no reason. My family is full of cancers and rare ones as well. Making it hard is family history. A lot of marriages, multiple husbands and wives etc. so narrowing it down to cause of benign or malignant tumor causes is challenge we face. They mention familial causes. It's all confusing, but I am learning slowly. Being able to talk to all of you here is amazing.
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Post by pringleman on Apr 25, 2014 1:44:56 GMT -6
I think it is good that they are trying to find a cause. Most of the people I have spoken to have said they have no idea what caused mine and they were not interested in exploring further. I too am rapidly coming from a family with many cancers. Yet on one has tried to find a common link or cause. No one has even asked if my parents were exposed to anything or whether I was.
My GPs have gone from "There is nothing wrong with you." to panic stations very rapidly too. They just do not have the experience with these sort of conditions to know what to do or to identify them when faced with the symptoms.
Your first surgeon sounds at first terrible but it could boil down to realising that they were out of their league. There is a new book out writen by a Brain Surgeon about all his mistakes. His basic message was junior surgeons want to prove themselves and take on cases that they do not have the ability to do. Older surgeons, having made some stuff ups, tend to 'let God solve the problem'.
Keep the ball moving!
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Post by girlo72 on Apr 25, 2014 10:28:11 GMT -6
Got result from oncologist. Neoplasm of unspecified nature. Full body ct with contrast for Tuesday 29 and another exam on 6. The nite for the 6th say return in about 2 weeks(around 5/6/14) for no labs ov no chemo.
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Post by girlo72 on Apr 30, 2014 22:42:35 GMT -6
Well no scans done, but rescheduled. After last scan had reaction to contrast and wasn't given scripts needed. Easy slip by all of us. But it is rescheduled. Yay! They have also scheduled a biopsy for next week as well. The ball is rolling! I would like to thank all of you so much. And I will update as soon as I can. Huge hugs.
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Post by pringleman on May 1, 2014 3:23:47 GMT -6
Sorry to hear that you had a reaction to the contrast. I hate that stuff. Can't enjoy food for days after that. Glad to see things are moving.  |
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