Bad News MRI Results

[Jwh]

Hi,

Unfortunately I've had a regrowth almost 6 years post op.  I'm so upset I can't believe I have to go through this again.  The size of the tumor is 10 mm.  Please pray for me to help me through this difficult time.  I need to be strong for my familly.  I have a newborn and have to focus on him and my daughter.

How can this happen when the doctor told me he had removed the whole tumor? 

Jen

[ceeceek]

Hi, and so sorry to hear about the bad news..but seeing that the regrowth is so small surely you must be a good candidate for CK or GK? and that will not interfere with your life..including enjoying your new son and daughter.
Hang in there, it is one of the things I am scared of in regards to my various upcoming treatments....I see so many people have growths recurr....AUAUUHHGGGG is the only response..not sure what treatment you had initially other than surgery, but things have come a long way in 6 yrs..do a little research, and hang tough,,maybe this time it won't be as bad this time around....after all, you lived through it once...and now you caught it way early...
Ceeceek

[cookiesecond]

Jen,
I am so sorry to hear this.You are definitely in my thoughts and prayers!!!!!
Take care,
Lynn

[amymeri]

Jen

I am so sorry to hear about your regrowth.  I hope that some of the non-surgical treatments can take care of it and let you continue life as usual.

Your case illustrates why we all need close follow-up.  I know some MDs advocate lengthening the time between MRIs after 5 years, but you are proof positive that we need to stay on course.  I am glad you found yours while it was small!  Can you imagine if you had stopped last year and not gotten another MRI for a few more years!

Best wishes

[jerseygirl]

Jen,

So sorry you have to deal with the regrowth. The good news is that your tumor is small and you most likely have all of the options open to you, meaning both surgery ( I know you don't want to hear this word, believe me, I am in the same boat) and radiation. There is an incredible amount of information and support here for you. I hope everything will work out just fine!

             Eve

[jerseygirl]

Jen,

Did the doctors tell you exactly where is the recurrence and what structures are involved? I am just trying to compare notes since I am further along into my regrowth. We were operated on at the same institution and share one doctor.

                                                  Eve

                   

[Jwh]

Eve,

I received the phone call late this afternoon from Dr. Cohen.  I was shocked that he was calling me since he has retired.  I didn't get any specifics.  I have to call Dr. Golfinos tomorrow and get all the details.  I'm just in total shock considering for the past 3 years, I was told it was scare tissue.  I truly don't understand how this happened.  I had a small tumor my first surgery and was told everything was removed.  I'm just trying to make sense out of this.

Jen

[Derek]

Hi there Jen...

So sorry to learn of your bad news especially after 6 years!!...but thankfully your regular MRI scans have found the regrowth at an early stage and hopefully you can have the 'little bugger' zapped into oblivion via CK or GK whereafter you can put all this behind you and look forward to a bright carefree future with your young family.

Very best of luck Jen.

Derek

[ppearl214]

Hi Jen,

I send huggles to you in hearing this news.... as we all know, this is the news we hope we never hear, but..... as you know, we are so so so very here for you and will help you get through this..... ceecee is right in noting that since the regrowth is small, you have options and maybe radio-surgery would be a very viable option for you.  The love of your children...  and your family and friends... and yes, even the Pirate Brigade, are going to help you through this.....

Phyl

[Dealy]

Hi Jen: Let me add my regrets for your bad news. As an NF2-I can relate. I just hope the best for you-and I reach across this Internet line and GIVE YOU A BIG HUG. Hang in there. Hoping for a swift resolution of your situation. Best WISHES-Ron

[kbh1950]

I am facing an MRI tomorrow to see if I have a regrowth.  What were your symptons?  How large was your first tumor?  My first tumor was 1.8cm almost 2cm on surgery day 12/11/00.  I am having numbness in my mouth, tongue, face and some headaches on the AN side.  My prayers are with you as you search out the plan for yourself.  Gather all the information you can.  Talk to others with the same history and pray that God will guide your decision.  Build you a support group of family and friends.  I am so glad that I found your message today.  Please keep in touch.  Philippians 4:13 "I can do all things through Christ who strengthens me".
Kay

[MLB57]

Hi Jen--I, too, have re-growth of the 1 cm rt AN I had removed via retrosigmoid/suboccipital in Jan of 2001. Last June (2006) it was determined indeed it was re-growtn (as first 3/4 years looked like scar tissue or variance in MRI films). Didn't tell my kids (grown kids, son age 35 and daughter age 29) until late August as son was getting engaged and didn't want to worry them)... Anyway I have seen two neurosurgeons, a neurotologist, two radiation specialists and soon to see another radaition specialist at Mass Gen Hospital (Boston, MA)as it is clear to me that surgery (per Dr Barker at Mass General) would present a 10% possibility of further damaging my already weakened facial nerve and no sense to wait and see as it's almost the size it was before, so radiation is my best option--now I have to decide what kind and how many sessions--I will see Dr Loeffler at Mass Gen March 21 to discuss this... This grows slowly (usually) so take your time to decide and be sure to ask about your facial nerve!

My heart goes out to you as I know we all had hoped once it was removed it would be gone forever, but there was a 5% chance of regrowth and so now we have to move forward.  I only have my two (wonderful I might add) grown kids and my son is getting married Juy 15 and this all weighs heavily on me but I am thankful that surgery is not my only optiuon!!!

Take care and hope all turns out wel!!!   Mary from MA

[flier58]

Hi Jen,
My heart and prayers go to you and your family. As a mom of 4-year old I really know how you feel regarding your family especially young kids.  It's the fear of how the kids are going to cope.  But they will and you will stay strong and courageous for them.
Flier58

[Jwh]

Mary,

It liooks like we're in the same boat.  I'm just learning about the impact of the facial nerve the second time around with surgery. 

Please give me some insight with the radiation.  What are the long term side effects?  Also anyone with Gamma Knife or radio therapy please help me understand the pros and cons.

Thank you in advance,
Jen

[tony]

I saw your note - not a happy time for sure
Re the gamma radio/approach - my suggestion is that you consult with 2 or 3
specialists in the field - then compare notes
Conventional "knife" surgeons tend not to like radio too much
(its a kind-of "company politics" thing)
so dont be too surprised at what they say
(truth is most of them dont seem to know too much about it)
In terms of your suitability - it does depend a bit where/how big and current
situation/symptoms and the above will know what to suggest
At the size you describe you would seem to have a good 12mths or so
(or more maybe) to arrive at a choice - so no panic required
Perhaps you can let us know your progress ?
Best regards
Tony