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Confused, Do any of you understand this?

AshleyWF's picture
AshleyWF
Posts: 43
Joined: Aug 2011

Feeling very confused since Tuesday. Let me start from Friday, the results from our first follow up MRI since surgery in August.

We walk into the cancer clinic and sit to wait for our appointment. I notice people stare at us when we walk in. It is mostly people over the age of 50 every time we are in there. It’s almost as though they want to ask, but they just stare instead. I’d almost rather them ask. Anyways….
The doctor comes in and tell us that the MRI looks good. He asks Jordan how he’s feeling and so on, everything is fine and normal and he tells us that because this is the first follow up MRI and only a CT scan was done after surgery, there really is no news other than things look clear and he will see us again in four months’ time. Previous to that appointment after surgery h e had told us about the remaining tumor, how Jordan is a special case, how the location is inoperable and drew a small picture that looked like a small round circle with the shape of the inside of a bean attached to it. The bean was the remaining tumor.

Tuesday we go into see the neurosurgeon for a follow up visit. He pulls up the MRI scan and reads a report. He shows Jordan on the screen how spinal fluid has filled the hole where the tumor was and explains how that is good and he is healing very well. He does a check up and asks health questions and like before he is great and everything is fine. No one is saying anything so I pipe up and ask “that’s great that he is healing well where the tumor was removed, but what about the remaining tumor” he says exactly this “WHAT?” … he looks again and says no, what is left is called a margin. There could be something underneath there we can’t see, but it could just be scar tissue… then he repeats margin a few more times. Still not understanding and seeing the frustration in the doctors eyes (lack of English and bedside manor) Jordan just shrugs and takes it as good news and we leave.

As we are walking to the car I ask him “did he really just tell us you do not have a remaining tumor? Or am I hearing things, why did you not ask more questions” he says to me “I can never understand anything. . . I’ll make an appointment at the cancer clinic and find out who is making the mistake”

Has anyone had this “margin” discussion? I am feeling very frustrated and lost. He never seems to care to much about what they say or what is going on. Makes it to real I guess?

Ashley

websterbr's picture
websterbr
Posts: 20
Joined: Oct 2011

Hi Ashley,

I would like to discuss our situations more but I have trouble getting on this site. If you would like you can email me at bmacmillan15@hotmail.com

I had my first post-op follow up MRI and second psot-op visit at the cancer centre last month. The oncologist said that there is too much swelling to tell for sure if all of the tumor was removed. I will have another MRI and follow up next month. I saw the surgeon as well and he showed me the MRI. It looked like he removed it all but there was still a spot that I was questioning. He was very confident that he removed everything that he could see. I am hoping to have more answers next month.

At my first post-op visit the oncologist came into the room very positive and said " you are in the best situation you can be in for having a tumor and it will be a long time until it comes back". At the second appointment he said he cannot tell for sure if it was all removed and was more serious and concerned.

I am wondering if what they really saw on Jordan's MRI could have been some swelling left from the surgery. The oncologist told me that they cannot differentiate between the swelling and the tumor at this point so they didn't want to say for sure one way or the other. When they were first investigating me they saw what they called "swelling" on my MRIs and after 3 MRIs over 5 months the "swelling" had increased and they finally said it was a tumor. Now they are telling me that there is swelling from the surgery. I told the oncologist flat out with all due respect this is what I was told from the beginning and it turned out to be a tumor so I do not trust that this is simply "swelling".

I think sometimes in order to get your answers and be treated with respect as a patient or supporter of a patient you need to be assertive. Not pushy but speak your mind in a politically correct manner. I work for doctors and I found that once I stood up for myself they started speaking to me like a human not just another case. I'm not sure if any of this helps...

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

I have heard a doctor refer to margins in regards to my friend's daughter. The doctor removed tumor from her lungs, and he took some healthy tissue around the edges of where the tumor was located, just to be safe and make sure that he got all of the tumor. Also I have another friend who had a malignant melanoma removed, and they took extra healthy tissue around the tumor and called it a margin. I've never heard of being able to see a margin after a surgery....

The doctor who said, "What?" and who is saying that there might be something underneath that they don't see....is he the doctor who originally told you that there was some tumor left after the surgery?

I sure can see why you would be frustrated. Does the doctor with the accent have an associate or anyone who could also be in with you during the meetings and maybe explain things too? I know it would be hard, but I would push and insist on answers. I'm done with being intimidated by the doctors and I'm asking questions now, over and over and over if I have to, until I get a satisfactory, understandable answer. I don't feel like it's my fault that I can't understand them or that they are not answering my questions. It's MY son with the brain tumor, and they owe it to us to explain things clearly and in a way we can understand. How dare they be annoyed or frustrated with us, especially when we can't understand their accent? I've run into this same issue and at first I was all nice and polite...now when I can't understand what a doctor is saying, I act frustrated and I say, "I can't understand you! Is there someone else I can talk to?" It might seem rude, but sorry, I need to know and I can't worry about someone's feelings. Anyway, most of the time, I don't feel like they worry about MY feelings....

Good luck with getting the answers you want, need, and deserve. Please keep pressing in! And let us know what the doctors say.

Love and blessings,
Cindy

ForHope
Posts: 16
Joined: Jan 2012

My brother w/ GBM IV. The second MRI post surgery had shown a lot of Residual?/margin that the NO called pseudoprogression. We all thought that 100% of the Tumor was removed so to hear about a potential regrowth was devastating. But NO said it cannot be confirmed as some people can have this happen to and doesn't necessarily mean regrowth and to wait and see with subsequent MRIs. But my brother just wants to do Temodar for two years,( just finished a year) without having to go through w/ the torture of getting an MRI and not even know the real answer from that. So now we just wait for nxt year to do another MRI. But I researched pseudoprogression it sounds like a real phenomena.

Much luck

ForHope
Posts: 16
Joined: Jan 2012

Check these wesites on pseudoprogression...

http://www.medscape.com/viewarticle/738826

http://www.ncbi.nlm.nih.gov/m/pubmed/18484594

Hope it helps
Much luck
ForHope

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

Hi
I work for doctors/surgeons. When they remove an area that is cancerous they take extra tissue so when they send the specimen to pathology, the pathologist can see if they got it all by seeing clear margins around the the infected tissue. So they need to remove some healthy tissue in order to make sure they got it all. I have asked my daughters neurosurgeon about that and he said that when it comes to the brain, you cannot take extra tissue and most likely a clear margin does not mean that they got it all when it comes to brain cancer. They are being truthful about not being able to tell about the mri results. The scar tissue looks like cancer on an mri. Same thing happened with my daughter. The mri after that one showed less scar tissue and more healing. The brain needs alot of time to heal. My daughter was cancer free for alittle over 1 year and each mri looked better and better. Good luck and God bless

DellaMarie
Posts: 9
Joined: Jan 2012

Hi Ashley,
You are dealing with a situation that causes those same feelings in all of us who are dealing with a GBM, either as patient or caregiver or close family member. If you leave feeling uncertain about what exactly the doctor was communicating to you, there is much you can do to get answers. When I accompany my husband on his doctor visits, MRI's etc., we always request a copy of the MRI scan, a copy of the written report evaluating the MRI scan and a copy of the doctor's notes/report of your visit. Jordan is entitled to receive copies of all tests, reports and records, that is his right as a patient. Reading through and reviewing this information may be very helpful to you so if you haven't gotten all his records, I would request them. If I leave the doctor's office and realize later I needed to ask more questions, I send the doctor an email and I always get a timely response back, sometimes written by the doctor's assistant but I'm not satisfied until I have clearly understood what the doctor feels they know or don't know. I am the one who ultimately is responsible for decisions that affect my husbands's life and it sounds like you are in that same role. Doctors seem give the least amount of information they feel they have to, they don't volunteer any information unless they are forced to when a direct question is asked. I am not an assertive/confrontational person by nature but I have developed my ability to be direct and ask questions I know doctors don't feel comfortable answering, but this is your loved one's life and the doctors feelings, discomfort etc. don't matter. I will review your posts/history and see if I can offer anything that may be of use to you, I'm here to help if you feel I could be of assistance or even just support, you are not alone in this-
Best,
DellaMarie

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

What an outstanding reply, DellaMarie! Great advice...this is how I try to operate with the doctors etc., but I get flustered and I've always had to fight a feeling of intimidation that I have regarding the "experts." Over the course of these 2 1/2 years, I've gotten a little better. Like I said, I'm finally growing a spine. If David's mom isn't going to fight for him...then who will?

One huge benefit of doing these things that you've recommended....it's helped me not to feel quite so helpless. It helps strengthen my resolve and makes me feel like I am doing something to help David. I too feel ultimately responsible for the care David gets and the decisions that are made, because David trusts me and values my opinion. A huge responsibility.....David always makes the final decision but I know that he is influenced by me.

This situation has changed me forever. I will never be the same. But there are some positives.....I feel more empowered than I have ever before in my life. I can do things and stand strong in ways that I never thought I could before. I totally believe that it's God who is helping me to face what I have to face....not just the major things but even the small things, like giving David a shot in his stomach twice a day....

We all can find hidden pools of strength within us.....

Love and blessings,
Cindy

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