Married immediately after low-grade glioma diagnosis, new to forum

Hi everyone,

I wanted to give a quick introduction.  I found this site last week and officially joined as a "caregiver".  Here's a brief synopsis of my husband and my journey so far:

March 16, 2012 My then-fiance John had a grand mal seizure at work.  Was admitted to the ER at a nearby hospital and went through the regular CT and MRI workup...were told he had a lesion in left parietal lobe that could be scar tissue or a low-grade glioma.

March 28, 2012 Follow ups with neurologist and neurosurgeon after functional MRI and MR spectroscopy

April 9, 2012 Finally told dx of low-grade glioma.  Docs had suspected this all along but we finally got an old MRI (circa 2008) sent over from a different hospital and the docs were able to confirm that the lesion had grown so it was not scar tissue as we had hoped.

April 10, 2012 We had just begun coming to terms with the diagnosis and decided to move our traditional 200+ person 6/23 wedding up to 4/20 (the following Friday so that family could come into town).

April 20, 2012 We were married in an intimate ceremony and then celebrated with all of our immediate family, some extended family, and a handful of friends at a restaurant.  We enjoyed the weekend with our families and then went back to work on Monday.

We live in Chicago, IL USA and today John traveled to NYC to do a bit of work for the next 2 days.  I will join him in NYC tomorrow evening. (I have mixed feelings about our first night apart as a married couple!!  I'm meeting up with a friend after work today and will be busy packing later tonight so hopefully I won't miss John too much.)  We are looking forward to enjoying a mini-honeymoon this weekend and then we are scheduled to meet with Memorial Sloan-Kettering neurosurgeons next Tuesday.  We are still trying to get a consultation at Johns Hopkins but don't have anything scheduled yet.

Due to the tumor's location, everyone we've spoken to has recommended surgery.  Biopsy was not recommended.  Now we are trying to figure out the team/facility in which John has the most confidence.

So far reading others' stories has given me hope and strength.  My best wishes to all of you and your families.  Please feel free to add me as a friend!

Sincerely,

Allyson M (formerly C)

Allyson, First of all, congratulations on your marriage. May it be a long and happy one! We live in the Chicago suburbs now but last year when my husband was diagnosed with a tumor we lived elsewhere and we researched for the best surgeon & oncologist around. The neurologist that we visited at Hopkins recommended someone at university of Chicago and so we went there, met up with the neurosurgeon & neuro-oncologist there and booked surgery. We also went to the NIH to consult with dr. Fine who is head of neuro-oncology at the NCI. He recommended Dr. Park at the NIH for surgery & follow up at northwestern for neuro-oncology. We have felt very comfortable with all that we did. Also, if you are in Chicago you should come to the northwestern brain tumor support group which meets the third Monday of every month. It helps both of us a lot. Take care, Annie

AllysonM:  So sorry to hear that you and your husband are now dealing with a low grade Glioma.  You didn't say how old he is...but I can tell you that the prognosis for a Grade II low grade glioma is not so bad... likely many years of time together following surgery, and maybe radiation.  My husband was 54 when he was diagnosed - right frontal lobe, didn't have surgery until 4 years later, and all told lived for 12 years following diagnosis. (With low grade, if or when it comes back it tends to be a higher grade)  I also wanted to say that he had his surgery at Memorial Sloan Kettering, and I would highly recommend Dr. Gutten - who was chief neuro surgeon when my husband was operated on...I think he is still there.  I am sure Hopkins is excellent also, but I wouldn't hesitate to use MSK if you like the doctors you meet.

He is very lucky to have you as his new bride...you sound very loving and caring.  Good luck to both of you.

Carol

 

 

 

 

Thanks Annie!  We are so happy to be married if not exactly in the way we planned, we both think the wedding turned out even better.  Emotions ran high and it was a memorable time for us and for our families.

I think John and I were starting to research a little bit too much and were afraid of getting into analysis paralysis with choosing a treatment team.  We relied on a lot of word of mouth references and a few random rankings to narrow our search down to MSKCC and Johns Hopkins.  We hope and expect his surgery to go fine but I do fear what comes next.

We will most likely come to the June brain tumor support group meeting.  Thanks for the advice!  I think it will be a help to us as well.  Maybe we will see you and your husband there!  I didn't mention this in my earlier post but Northwestern is where John was taken by ambulance after his seizure.  He has been seeing Dr. Sean Grimm.

Thank you for your kind words Carol!  I am so sorry to hear of your husband's passing, but I am glad that you had many happy years together.

John is 29 now and will be 30 in June.  It's funny because the neurology team that we met with initially said that he was lucky that he was so young because he should have a decent prognosis.  John caught on to the sad irony of that statement though and mentioned to the team that while that may be true, if he had been older he would have at least have had the chance to live to a certain age prior to the diagnosis.  That shut them right up!

Yes, Dr. G is still at MSKCC and came as 1 of 3 recommended neurosurgeons there.  I am hoping John feels comfortable with the team at MSKCC because they are able to see him sooner than Hopkins.  Thanks for the input on your experience there.  It gives me a sense of relief that we would be in good hands.

Since John didn't have a biopsy, we're not exactly sure what the pathology of the tumor is so I'm fearing maybe they misgraded it.  I hope that technology catches up quickly so that everyone facing this disease has many more effective treatment options in the future.

AllysonM:  To think that your husband is not even 30 yet, makes your battle all the more poignant.  It is not fair that you and he should have to deal with a brain tumor of any kind.  My heart goes out to both of you.  I know how frightening these early days and choices of treatment are.

However, I am hopeful that even without a biopsy, the likelihood that John has a low grade tumor at this point is strong.  He fits the low end of the age profile, and presenting with a seizure is one of the symptoms of low grade gliomas, even more than GBMs.

His tumor is in a different lobe than my husband's was, so many of the longer term challenges we faced could well be very different for you.  I imagine you have already looked on-line as to what the Parietal lobe controls.  Those functions are where to expect potential issues.  The surgeon will only take out tissue that is not critical, especially in such a young person, and depending on how much they can resect, they may want him to go through radiation soon after surgery to address remaining cancer cells.  But, radiation has its own longer term gradually developing side effects, so they may want to wait for any new changes in remaining tumor to keep his quality of life good.

I no longer come on this board all the time, as it has been 3 1/2 years since my husband passed.  But, when I do come on and see questions especially about low grade tumors I feel like I want to help with any perspective I may be able to provide.  So don't hesitate to ask if you think I can be of assistance.  Many more of the posts on this board have to do with GBMs and understandably so, as GBMs are more immediately critical, and common for brain tumors than low grade ones.

Once again, I hope you and John get through this initial phase well, and that you enjoy symptom free years of happiness together.

Carol

Allyson, my husband was diagnosed with a low grade glioma in Jan, 2011.  He presented with a partial seizure.  They could only do biopsy and not surgery.  He did 6 weeks of radiation and temodar and now will be completing is 12 cycle of temodar. He has had shrinkage of his tumor and what they do see they think might be scar tissue. My husband is in his 60's so the radiation and temodar does make him very fatigued for at least a week after chemo,  but physically he is doing well. He walks 1-2 miles a day. My suggestion to you would be to get

David Sevan-Schreiber MD book "Anti-Cancer a New Way of Life" - the updated edition.  He was diagnosed with a brain tumor at 30.  He doesn't say which grade of tumor he had but he does say that it was not the most malignant so I am assuming it was not a GBM.  He passed away last year at the age of 50.  When he had a recurrence of his tumor he decided to change his diet.  He references almost everything he says.  After reading his book I made my husband change his diet.  My husband ate mostly red meat, sugary snacks etc.  Now his diet is mostly fish, vegetables and fruits, oatmeal etc.  I don't know for how long his tumor will stay stable but eating a healthy diet and exercising  has been shown to prevent recurrences in breast cancer. The longer a person can stay stable the greater the chance a vaccine or new treatment will be developed.   Hope this helps.

I should also mention that he was first diagnosed with a grade III anaplastic astrocytoma because there were some cells that were mitotic.  But our oncologist says that it is probably a mixed cell tumor and since his tumor never enhanced on MRI and appears to have been a very slow growing tumor than he believes it is more a low grade between a 2/3.

Carol, thanks for your reply!  Although our situations at the early stage of diagnosis were different, as you mentioned, I do feel frightened all the same and am really worried about making the right choices.  My main concern is not doing anything that could harm John or make him ineligible for future treatment options.  It is going to be tough to decide what to do as I'm sure it was for you.

Your words are really comforting and I really appreciate you taking the time to write even though you don't come onto the board often.  I am feeling better about the chances that the tumor is low grade after your words of validation.  We ended up getting a consultation at Johns Hopkins this Thursday so we'll be going to MSKCC on Tuesday and then over to Baltimore on Thursday.  I hope the doctors can answer some of our questions and give us a better sense of what to expect with surgery and perhaps future radiation treatments.

Thanks again for everything!

Allyson

Mollie, thanks for the information!  I am glad to hear that your husband is physically well and I wish you both the best.  I will check out the book that you recommended.  I have been encouraging John to eat healthier and exercise more...we both enjoy food a lot and eat everything, but with John's health we may try vegetarianism and see how that works.

Exercise is also a wonderful idea for both of us.  We had been doing very well with exercise prior to John's diagnosis but have fallen off the wagon a bit and need to start exercising regularly again.  We are willing to do anything that helps as it sounds like you and your husband are doing as well!  I appreciate your suggestions.