Rapid Regrowth

[chrisabbott]

Yesterday I had an MRI - 6 months post translab surgery.  They left some tumor behind because it was sticky and lying along my facial nerve.  The report shows increase of 8 mm, 2 mm, and 7 mm in the size of the tumor compared to the post op MRI.  I didn't think they could grow that fast.  My appointment with my neurosurgeon is Tuesday (17th Dec) and I emailed him to be sure he knows I've seen the report and I'm shocked.

Has anyone else had a rapid regrowth of their tumor after surgery?  I'd like to know how you addressed this situation and how you're doing?

Thanks everyone.

[jami]

hi Chris,

Sorry to hear about this. At my 6 months, the growth was small but it was there:
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm

They told me that the tumor can 'puff' a bit initially (?) but strongly recommended action. I was shocked, as well, but not too surprised because i was experiencing increased facial numbness again. I ended up doing Cyberknife - after a consult with the neurosurgeon, the ENT surgeon (I always forget the formal term for that guy) and then the radiation oncology specialist.

The Cyberknife treatment was about 6 weeks after the 6 month MRI, and amazingly easy (although i took the week off work). I had my 6 month post CK MRI at the end of October, and the tumor had actually shrunk a tiny tiny tiny bit, it was SUCH a relief.

I am now waiting 12 months for my next MRI (per my request of the medical team, with a promise to call them if i get new symptoms).

Jami

[chrisabbott]

Thanks Jami,

Glad to hear you have promising results at this time.

[chrisabbott]

Well I met with one neurosurgeon, and he wants me to have another surgery asap (January) followed with radiation.  He says since my residual tumor is growing fast, we need to reduce the size as much as possible, then radiation to minimize risk of regrowth. 

I actually don't mind the prospect of surgery as much as radiation - I didn't anticipate needing it 6 months after the first go round, but when I had my first MRI the tumor was already 3.1 cm, and there's really no way of telling how long I had it.

One of my surgeons completed his fellowship at House, the other's career is all skull base surgery with a string of awards for his skills and teaching - I felt like my first surgery with them was conducted very well.  I was so comfortable post op, my stitches were a work of art, and from start to end, the surgeons were available to me.  I think they might have been a little more aggressive in the tumor removal, but then I already had facial nerve damage and they were trying to avoid more.  I probably would've felt they should have been less aggressive if I had more side effects.  Currently, I have recovered some of the sensation I lost prior to surgery and only gained fullness around my AN side ear as a new side effect.

Sooo, I'm wondering who else has had a second op followed with radiation?  I seem to recover very well from surgery and am in good shape right now but the radiation thing is a completely new and scary prospect.

I have a meeting with the other surgeon (the Otolaryngologist) Monday am and trying to think of questions I should ask this time.

[ColleenS]

I am in the same situation as you Chris. I had my first surgery in 2017. Radiation for regrowth in 2019 and now regrowth again. Waiting until April to see if it stabilizes. If not, surgery again. This time I will do radiation on the fragment left right away. When I had the radiation the tumor was almost to the original size in just 14 months post-surgery.

[chrisabbott]

I updated my signature - running out of room!

My residual this time is being reported in mm vs cm - I was relieved to see the post op MRI since the report is confusing.  I now have two little blobs with a very thin sliver of tumor connecting them.  My brain stem is not being pushed around anymore, and despite the fact that tapering off the steroids has me up at 3 in the morning nursing a sore head, I feel so much better for it.

Unfortunately, I seem to be a magnet for complications - forgive me if this is a repeat, but here's how my treatment has gone thus far:

June 2019 had the tumor reduced via translab - I had a bad hematoma from the abdominal fat transplant, but otherwise healed well.  They left quite a bit behind - stuck to my facial nerve and brain stem, and I already had facial numbness/no tear or saliva production on the AN side. 
By September, I had a CROS hearing aid set up and hearing better than I have in decades - some improvements in facial nerve showing up especially by November so I was pretty happy.
Dec MRI showed my residual tumor is growing fast. Plan is to revise the surgery - they expect to be able to get more tumor this time and will follow up with GK. 
Second surgery left me with a little blob of tumor at each end of a very skinny sliver.  Tummy tried to act up again but they fixed that before I even got to ICU.  Unfortunately, I reacted to a post op pain killer and threw up for 24 hours, I also experienced a sudden onset of head noise (I can't call it tinnitus, I've been plunged into an emergency generator) and my non tumor side hearing disappeared.  I'm profoundly deaf. 
By second evening, we realized I had a CSF leak they fixed that first thing next morning - definitely more sore than the tumor surgery.

A week before I found out my tumor was regrowing, I sadly realized that my 28 year marriage could not be salvaged.  My January 13th surgery was on my 28th wedding anniversary, and my divorce was finalized 28th January - I can't imagine what everyone in court must have thought since I was still pretty bruised!  At first it was like a cruel joke, but I had the amazing support an love of my son, my local friends, and my sister flew from England to join me.  Interestingly, this experience has resolved what I dreaded:  wondering if I'd never know if I did the right thing.  Let me tell you - do not go through brain surgery twice with the wrong person.  I did the right thing.

Monday I meet my neurosurgeon to discuss GK, and February 24th I'll be receiving a cochlear implant for the hearing loss on the non tumor side.  April, I will be meeting a bunch of girlfriends from around the US at major fiber festival - we knit, weave, take classes etc.  I've put the organizers on notice that I will be exploring all avenues for accommodating hearing impairment, to get the most out of my return to my real world.  Life is good.

[Maria Odete]

Dear Chris,

I'm so sorry for what you had gone through lately - your AN surgery, divorce and loss of hearing. So much to experience in a short period of time. I feel for you.

I wish you success on your upcoming cochlear implant surgery. Please let us know how it went.

If you need to talk, please leave me a private message here on the forum.

Sincerely, Maria Odete

[chrisabbott]

Thanks so much - "Complicated Chris" will be back to provide updates )