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Post by saramomofmany on Sept 5, 2008 7:54:31 GMT -6
Hi, My name is Sara. I just officially joined, but have been reading here since June.
My 28 year old sister was diagnosed with a SCT in June 2008. From the MRI, the Neurosurgeon said it's goes from about C1-C7. He wanted to do surgery w/in 4 weeks. However, on the MRI they found a tumor in her salivary gland, so she had to see an ENT for that first to see what it was, and make sure it wasn't related to the SCT.
The ENT Dr. said 80% of salivary gland tumors are noncancerous, so he wasn't too concerned, and recommended she have it removed in the future after she was recovered from SCT surgery. Well, the Neurosurgeon decided he didn't want her to be worrying about the salivary gland tumor while she was recovering from SCT surgery, so he wanted her to get surgery for the salivary gland first.
So in July she had the surgery for the salivary gland tumor and the results were high grade cancer. She had positive margins, so they wanted to do radiation on her salivary gland and lymph nodes(though the lymph nodes were not enlarged and did not show up on her various scans).
My sister met with the Neurosurgeon again, and he said since her SCT symptoms were relieved from the steroids they put her on, and she needed radiation for the salivary gland cancer, that they would probably do the SCT surgery in 3-6 months.
Ah...so then they had a Tumor Board meeting about her because they are sort of perplexed being she has 2 rare tumors and is so young(28). They came to the conclusion that her SCT is too big for surgery and that her risk of becoming paralized was very high. So now they want to do a radiation combo on her salivary gland area, her lymph nodes and spinal cord at the same time. They are hoping to shrink the SCT enough to give her maybe 10 years relief
and then do the surgery in the future.
So my question(after such long background info, sorry) is, has anyone been told there tumor is too big for surgery? It seemed odd to us for them to go from taking it out within 4 weeks to let's wait maybe 10 years??
Has anyone had radiation for their SCT instead of surgery? If so, how did that go?
She is probably going to be starting radiation next week from the last I've heard.
Thanks!! Sara
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Post by tc on Sept 5, 2008 9:20:27 GMT -6
Please have your sister get a second or third opinion before she allows anyone to radiate her spine. Surgery (attempt at total resection) is usually the first thing done, then surgery a second time if it grows back, then radiation only if necessary. If this is a metastasis from her other cancer, then I don't know if the treatment for that kind of tumor is the same as the normal treatment for ependymomas. I hope someone who knows answers your post!
Oh, and welcome to the group! I'm so sorry to hear about your sister's salivary gland. That must have been a shock added on top of the shock of finding a spinal tumor.
Teresa
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Post by susan on Sept 5, 2008 11:00:27 GMT -6
I'd get a second opinion on everything. At 28, I would think they would want to do another resection to get clean margins, but I'm not a surgeon.
Are you in a big city? Isn't the Mayo Clinic in Minnesota? I'd start there.
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Post by Linda51 on Sept 5, 2008 11:04:46 GMT -6
Hi Sara, Welcome to the group. Sorry to hear about your sister. But, I will agree with TC tell your sister to get more opinions it nonsense that her tumor is to big mine was bigger than that from C2-T2 and I was never told that. It is true her tumor is big but with an experience NS they aren't going say it to big to get out unless they are inexperience and never saw this kind of tumor in the spinal cord. So tell her to ignore that comment and look for another surgeon. There is risk for paralysis from neck down in that area and it is rare to have spinal cord tumor and i'm sure it difficult for the doctors since she got another tumor that is cancerous but still don't take this doctor advice on the sct. If radiation is done first then later a surgery is needed this will cause problem for the surgeon. It takes a biopsy to know for sure what type of tumor she or anyone has and I will say with a good experience doctor they might be able to tell you in advance what type it is but even sometimes the MRI doesn't show everything. For a very good piece of mind I'd suggest to your sister to contact Dr. Jallo. He is very experience in sct and if your sister can't see him in Baltimore i'm sure he can give her another surgeon close to her. Dr. Jallo will look at her MRI for free and get back with her in no time. I wish all of you the very best and tell her not to give up. I was a young age for my diagnoses as well just 29 but now much older than that. Thoughts and prayers to all of you. Here is Dr. Jallo info. George Jallo, MD Division of Pediatric Neurosurgery www.neuro.jhmi.edu/pedsnusJohns Hopkins Hospital 600 North Wolfe Street, Harvey 811 Baltimore, MD 21287 Tel (410) 955-7851 Fax (410) 955-7862 gjallo1@jhmi.edu ~Linda |
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Post by saramomofmany on Sept 5, 2008 11:24:42 GMT -6
If this is a metastasis from her other cancer, then I don't know if the treatment for that kind of tumor is the same as the normal treatment for ependymomas. Oh, and welcome to the group! I'm so sorry to hear about your sister's salivary gland. That must have been a shock added on top of the shock of finding a spinal tumor. Teresa Hi Teresa, thanks for your response. From what the doctors have said, they Do NOT believe the two tumors are related. This has been shocking for all of us. As bad as it was to find out my sister has a sct, them finding this out may have saved her life since the salivary gland tumor is an agressive cancer, but she had no symptoms for that tumor(she did have many symptoms for the spinal cord tumor though). If they didn't find the salivary gland tumor now, who knows if they ever would have until it was too late. Sara |
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Post by saramomofmany on Sept 5, 2008 11:28:52 GMT -6
I'd get a second opinion on everything. At 28, I would think they would want to do another resection to get clean margins, but I'm not a surgeon. Are you in a big city? Isn't the Mayo Clinic in Minnesota? I'd start there. Hi Susan, As for the salivary gland tumor, they talked about going in and doing a neck dissection(I believe is what it is called) since the margins were positive, then after the Drs met at the tumor board, they decided no, they would just do radiation to where the tumor was and the lymph node on her neck. My sister lives about 20 minutes from St. Paul/Minneapolis so she is pretty close to big cities. The Mayo Clinic is in MN, about a 90 min. drive for her. I recommended she get a second opinion, and mentioned the Mayo Clinic, but she seems set on staying where she first went. You know the saying, you can lead a horse to water, but you can't make them drink!?!  Sara |
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Post by saramomofmany on Sept 5, 2008 11:32:49 GMT -6
Hi Sara, Welcome to the group. Sorry to hear about your sister. But, I will agree with TC tell your sister to get more opinions it nonsense that her tumor is to big my was bigger than that from C2-T2 and I was never told that. It is true her tumor is big but with an experience NS they aren't going say it to big to get out. So tell her to ignore that comment and look for another surgeon. There is risk for paralysis from neck down in that area and it is rare to have this kind of tumor and i'm sure it difficult for the doctors since you got another tumor that is cancerous but still don't take this doctor advice on the sct. If radiation is done first then later a surgery is needed this will cause problem for the surgeon. It takes a biopsy to know for sure what type of tumor she or anyone has and I will say with a good experience doctor they might be able to tell you in advance what type it is but even sometimes the MRI doesn't show everything. For a very good piece of mind I'd suggest to your sister to contact Dr. Jallo. He is very experience in sct and if your sister can't see him in Baltimore i'm sure he can give her another surgeon close to her. Dr. Jallo will look at her MRI for free and get back with her in no time. I wish all of you the very best and tell her not to give up. I was a young age for my diagnoses as well just 29 but now much older than that. Thoughts and prayers to all of you. Here is Dr. Jallo info. George Jallo, MD Division of Pediatric Neurosurgery www.neuro.jhmi.edu/pedsnusJohns Hopkins Hospital 600 North Wolfe Street, Harvey 811 Baltimore, MD 21287 Tel (410) 955-7851 Fax (410) 955-7862 gjallo1@jhmi.edu ~Linda Hi Linda, Thanks for your welcome, and thanks for Dr. Jallo's contact information. I will pass the information on to my sister, and hope she makes the right decision. The Neurosurgeon thinks her SCT is either an astrocytoma or an ependymoma, but he wasn't sure. Thank you so much for the prayers, they are very much appreciated. God Bless, Sara |
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Post by shannan on Sept 5, 2008 12:19:50 GMT -6
I would also like to welcome you to the group. I agree that your sister should seek other opinions, as there are certain types of tumors that are more resistant to radiation. There are also other possible negative side effects to having radiation to your spine, some of them are long term and your sister is still young. Dr. Jallo is very experienced and I, like Linda, believe you should contact him. You and your family will be in my thoughts, good luck.
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Post by qhcrazy on Sept 5, 2008 19:13:00 GMT -6
Hey there, welcome to the forum! Wow, 28 does seem young for this to happen. Please know that your family is in my prayers.
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Post by tyler 1212 on Sept 6, 2008 7:40:45 GMT -6
Hi Sara,
I also live in the Twin Cities metro area. I had a subependymoma 90 percent removed that ran from C5 to T3 with a syrinx at C4. I was never told that it was to big for surgery.
I had a very good surgeon at the University of Minnesota. Unfortunately he has backed up his bags and headed for Chicago so I can't recommend him. But there is a surgeon at Abbott Northwestern, his name is Dr. Nagib, who would be very good person to talk to. I'am very curious, where is your sister being seen? Best wishes to you and your sister. Tyler
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