ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: mk on November 11, 2010, 07:19:16 pm
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Hi there,
just wanted to vent here. I had my MRI recently and I have been getting conflicting opinions. The GK doctors had a meeting and said that the AN is stable. On the other hand the radiologist mentions in his report that there is some growth, from 2.8 cm in April 2010 to 3 cm now. On the other hand, the April 2010 report that was signed by a different radiologist stated a size of 3 cm. So no growth based on the assessment of the previous radiologist, but 2 mm growth based on the current radiologist. As far as I know my AN has been bigger than 2.8 cm during the last two and a half years that I have been getting MRIs. I have been looking at the images, and I don't know how on earth he came up with the 2.8 measurement. I know that 2 mm is within the margin of error, but when the size is already large, even slight growth matters. This has alarmed my radiation oncologist, and he said that he will ask another radiologist at their site to look at it again. At least he takes it seriously and he is very helpful.
I find this very annoying and confusing. This comes on top of the already negative experience I have had with the radiologists, after the one reading the diagnostic MRI severely underestimated the size of my AN. It also enforces my opinion that it is always a good idea to double check the scans.
The reassuring thing is that I don't have any new symptoms and generally I feel very well. I would guess that if there was indeed growth, new symptoms would appear. I really think that GK has worked, I just worry that in my case this may not be enough given the size that is already quite significant.
Marianna
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Hi, Marianna:
The MRI reports can, indeed, be frustrating. When I had my last MRI series taken in December, 2009, the radiologist cited one set of measurements, Dr. Chang cited another set and I measured yet a third set (although my measurements were almost identical to Dr. Chang's). As you know, the three measurements are made obliquely, or at an angle, across the greatest span of the tumor for each of three axes. This makes the exact measurements of the tumor very subjective. It is not uncommon for two doctors to cite measurements along the same oblique axis that differ by as much as 2 or even 3 mm!
Anyway, I hope you finally get some answers that put your mind at ease. I know this isn't easy for you.
Best wishes,
TW
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Hi Marianne. I'm glad to hear that you in general feel very well.
New symptoms may or may not appear with or without growth. Each individual has his or her own experience.
Radiologists are competent people who can meassure growth +/- 2 mm. However, I aggree it is important to double check, because mistakes do happen.
Best regards, Kenneth
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Update. My radiation oncologist was uneasy about the discrepancy, so he asked the opinion of a third radiologist. His assessment is (and I agree because that's what I had figured out myself too), that overall there has been at most 2 mm growth since GK, which was 2 and a half years ago. Of course some minor growth is not unexpected post-radiation, but my doctor referred me to Dr. Rutka, to get yet another opinion. Many here know Dr. Rutka, he is considered the guru in ANs in the Toronto area. I have an appointment with him in two weeks. So it seems that I am in for yet another round of consultations.
Marianna
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Marianna
Please keep us updated on this. As noted, there can be, down the road, hiccups in growth post-radio.... and the 2mm is within the total margin of error for head MRI's........ please let us know what they say.
Hang in there! :-*
Phyl
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Is "GK" gamma knife? My neursurgeon said at one point he saw a slight growth in my tumor but said growth alone isn't always an issue. He said the tumor is still affected by the gammaknife and it kind of moves (grows and shrinks). He said density is a bigger issue than growth alone...so not to worry unless he sees other signs that makes the slight growth a problem. I was in the clear for another 6 months and then they said it was growing enough to cause brain swelling and I had to get the surgery. Anyway, glad you are getting another opinion. Best of luck!
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Yes, GK is shorthand for GammaKnife. Your comment about "density" is totally perplexing, though, Angela. To my knowledge, nobody can tell how dense a solid tumor is before cutting it out (the only exception is sometimes a doctor may suspect the AN is filled with fluid). And it is the impingement on cranial nerves and the brainstem that matter, not how dense the tumor is. Somebody please correct me if I'm wrong about this.
Best wishes,
TW
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Angela, could you clarify what you said about the "density"? Like TW I have never heard of this. It does make sense that the texture of the AN would be altered after radiation. My husband actually asked me this question: if the size remains the same, but this thing is dead, then would it cause less pressure to the surrounding structures? I have no idea. All I know is that my doctors agree that the compression has remained the same, in spite of the slight growth. This might be the reason that I don't have any new symptoms.
Angela, did you have surgery first and then GK, or vice versa? Did you have swelling after the GK?
Marianna
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Hi Marianna,
I am sorry to hear that but glad that you have no other symptoms. Dr. Rutka is supposed to be very good. I am a little confused as to why a second opinion is required considering the amount of obective opinions from the different radiologists that there are at the gammaknife clinic. Did you speak to Dr. Schwartz about this directly?
Please keep us posted.
All the best.
Vivian
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Missed your earlier posts.
If you are in town sometime in the next few weeks (and are coming in via train!), you know I work next to the train station.
I like Dr. Rutka (I liked Dr Baillie better but you would need to fly Dublin to see him!)
Keep us posted, hopefully, this is just a rounding error and Rutka will encourage you to stay the course.
If not, you know more than most and are incredibly upbeat!
Take care.
Ann
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Thank you all for your interest and concern.
Vivian, I actually asked Dr. Sahgal (the radiation oncologist) to refer me to Dr. R., first of all to get an opinion about the severity of the compression that already exists and also because I want to have a plan B ready, if the next MRI shows more growth - in which case I have decided that I am going to seek surgery.
Good point about Dr. Schwartz, actually I never saw him after that initial consultation, and he didn't seem to be involved at all in my followup. I certainly have a lot of questions for him though, and now that you mention it I might want to try to see him too.
Ann, I will be in Toronto on Monday. I am not sure how long the appointment will last, and if I have time before I catch the train, but I can give you a call if I have some time. Could you resend your phone number by PM?
Marianna
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The way my doctor explained it, the tumor is affected by the gamma knife ... for years. He made it sound a little bit like an ameba (at least that is how I picture it). He said the radiation is affecting the tumor at different points of time and then the tumor is reacting. He said sometimes it swells before it shrinks. So when they are looking at the films they are paying attention to that. For example is it a consistent growth or will the next scan show a shrink, which would lead him to believe it was swelling? I had the GK in October of 2007 and then the surgery in June of this year.
When they were reviewing my films last year, the "oto" doctor thought the tumor had grown but we had two differnet neurosurgeons who said that they disagreed. They said he as comparing the size at two differenet levels. For example he was looking at the middle of the apple and they were following the top.
Yes, I did have swelling after the GK. It swelled and then shrank, and then grew to the point that I had to have surgery because it was causing swelling in the brain.
As for the density...he said it (GK) could start killing cells within the tumor. So for instance, it has the same circumference, but inside it is getting less dense as those interior cells are dying.
Hope that makes sense. I am sure he (my neurosurgeon) might be appalled and how I relate his stories :o
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I'm sorry about all the trouble Marianna. Good luck next Monday. I'm sure things will work out well. I saw your other post about Dr Tymianski. I never met him, and I've only spoken to one person who's niece had a consult with him. She is very young 32 (just a little younger than Moi :D) and she was shell shocked when she spoke to him so she didn't really have much to say about it.
Please let us know how it goes. I believe there is a support group meeting on Tuesday night. I may try to get there, but I have to be up in Orillia by 08:00 Wed am so that my prohibit my being out after 9pm.
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Nikki,
I also checked out the ANAC site, but it seems that there isn't much info out there on Dr. T. Maybe he started working on ANs more recently.
I also contacted Dr. A. in Vancouver. He responded within an hour! This is amazing considering how busy and sought after he is. He asked me to send him the scans, which I will do ASAP.
Marianna
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That is good news. The girl I spoke of has seen Dr A for a consult on Nov 1st. He will be doing her surgery sometime in Feb. Let us know how it goes with Dr T. I did look at a couple of articles on him, and it is true, his interest does seem to lay more in strokes (prevention of brain cell death, and recover from) and I can't find anything regarding skulll base tumour, BUT they have to all start somewhere. He does do a lot with arteriovenus malformations and aneurysms so he's no stranger to working with delicate structures in the brain.
The entire research bit does suck huge Marianna. Let me know if I can help at all, even if it's just to hook up for latte and chat.
Nikki
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Nikki I know that in your search for treatment you researched all the doctors extensively. Something more difficult to do in my case, because of the lack of proximity to the GTA. But I am lucky that I have access to all this collective knowledge and research that you (and Ann-Keeping up and Trish, and everyone else) have done.
As for a doctor that is not very experienced on ANs ... I think I will pass. I already have a consult scheduled, but I don't hold my breath.
Marianna
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So here is the update.
After all this going back and forth and me insisting, the radiation oncologist sent the scans to a 3rd radiologist who also thinks that there has been some growth (2-3mm) after GK. Ditto for Dr. R. - we looked at the scans together, he was very thorough and caring, so I am very convinced of his assessment.
So maybe I should move this thread into "microsurgical options', but I have decided that I want this thing out - now (meaning the next few months) is the time to do it when I am also in good shape professionally and I can easily get sick leave and help (my mother in law has retired and has offered to help). I actually feel much better now after deciding that this is what's needed.
I am still seeing Dr. T., but also have asked for more referrals. I was told Dr. Cusimano is very good. The radiation oncologist at the GK centre said that he will arrange for a consult with him (together with Dr. Schwartz). Has anyone heard about Dr. Cusimano?
Happy Thanksgiving weekend for our friends south of the border.
Marianna
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Hey Marianna
Best wishes going your way as you walk down this next step of your AN journey. I am very sorry this was the end result but at least you are getting several referrals. Is the BC doctor an option (Nicki's and Adrienne's surgeon?) - no clue how out of province care works. We don't seem to have many participants on this site with surgery in Toronto - Trish's doctor is unfortunately ill again and Dr. T is stepping in. (I was originally referred to Tymianski as Guha was on medical leave.)
Thinking of you.
Ann
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Oh, Marianna, I am so sorry this is going the way it is for you. It makes sense, though, that you should turn to surgery at this point. Props to you for being so proactive in your health care and insisting on getting more opinions.
I will be thinking of you every step of the way along your journey.
Best wishes,
TW
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Marianna ~
Having come to recognize you as a very focused, conscientious poster on these forums I have every confidence that you've made a sound, if difficult, decision. I wish you complete success with the surgery and a swift, uncomplicated recovery.
Jim
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Thank you for all your support. It means a lot to me. As difficult as this is, it is great to know so many people who care and to have access to so much collective expertise - this forum has been invaluable throughout this journey.
Ann, yes, it seems strange to me that there are no more people with more recent surgery in Toronto. I have also inquired at the ANAC forum, but didn't receive any responses. I know of a couple of other recent cases (outside the forum) who weren't impressed with the options they were given in Toronto and have gone elsewhere. I am curious to see Dr. Cusimano, I have read many good things about him. As for Dr. Akagami (the Vancouver doctor), he is my big hope right now. I have already contacted him and he responded promptly, asking me to send my scans, which I did. So I am eagerly waiting for his response. There is a reciprocal agreement between Ontario and BC, meaning that care in BC is covered by OHIP.
I will keep posting updates whenever I have them.
Marianna
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Hi Marianna,
I do not know how I missed this. I did see Dr Cusimano at St Michael's Hospital a little over 3 years ago. I believe he is a neurosurgeon who specialises in radiation treatment. I wasn't a candidate for radiation because of the location of my facial neuroma. He is well spoken and at times I had to ask him to simplify the language a bit and he did.
Good luck,
Anne Marie
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Hey Girl,
I missed it too...so sorry...I do come in every day, but sometimes I just skim...too much painting you know. Let me know how it goes. If there is anything I can do...
I do know a guy who I met through the ANAC web site and he had surgery with Dr. Nedzelski on Oct 26th. He called me here at home a few days after the surgery. I was so excited to talk to him. He did really well too.
Nikki
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Sorry I'm posting late on this one, my lap top has been in the fritz the last couple weeks. I just wanted to acknowledge the huge decision you made, and as a veteran AN'er I'm sure you feel relieved and have a sense of calm with your decision to have surgery. Please let us know when you are scheduled! Don't forget the lip balm (chapstick is very important!)
Take care,
Liz
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It does seem that after all I will be joining the select club of the few who are both radiation and surgery veterans. I don't think anything will happen though at least for a few months with the slow pace of consultations. Dr. Akagami's secretary phone today to tell me that he is willing to see me and they will be scheduling a consult. I am very excited about this.
And yes, I have read about the chapstick and I know that it is the most important thing to bring.
Thank you all.
Marianna
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Marianna ~
On a lighter note: perhaps I'm an anomaly but I didn't need Chapstick during my post-op stay in the hospital (5 days, 4 in ICU). Still, it can't hurt to pack it...just in case you have a severe case of chapped lips. :)
Jim