Anybody NOT treat stage 2/3 astrocytoma...?

Ok so I have a question for all the awesome brain tumor warriors out there...

I was diagnosed back in December 2011 with an "unusual" stage 2/3 astrocytoma. The diagnosis came after a full resection of my 6x4cm tumor. The tumor on radiology reports was classified as high grade (3 or 4 they estimated). It was unusual per the pathology reports because it was majority stage two, had some findings consistent with stage 3 (mitosis) and some rare findings of stage 4/gbm (necrosis). Overall they staged it as the unusual 2/3 and none of the three pathologists I sent it too wanted to commit to a straight higher grade.

My team at Hopkins (neuro oncologist, neurosurgeon and radiation oncologist) have all agreed with a "watch and wait" approach in regards to further treatments. It was also presented to the tumor board which also agreed. My oncologist was the least optimistic of the group telling me it would for sure come back and be more aggressive but he still did not think chemo was/is appropriate at this time. Radiation onco was along the same lines saying immediate radiation after full resection vs radiation when it grows has not proved to have significant differences in overall survival (whatever that may be...).

After talking to other people in similar circumstances I am now worried that we are being too passive with this approach and maybe a more aggressive treatment, while sucky now, would be better in the long run.

I go in for my three month MRI soon and will hopefully be able to discuss this in more detail with my doc but my surgeon, whom I love and am thankful for every day that he was able to remove the tumor, is probably the most optimistic of them all (and I'm all for optimism but not if it puts me at risk) and he has almost no fears of a reoccurance (gotta love surgeons and their "god" complexes, if they fixed something then its fixed for good in their eyes!) and I am only following with my surgeon at this time...since I'm not doing chemo/radiation.

Sorry to ramble on and on but I would love to hear your thoughts/experiences.

Thanks!

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  • Hi! We are not in the exact same situation but pretty close. My husbands brain tumor was also a 2/3- but no signs of 4/gbm necrosis. It was only the very interior portion of the tumor that showed mitosis and I believe if it had not been removed 2 months after discovery there is no telling what it would look like now (we have confirmation on the post op MRI that there are some changes from the discovery MRI that may indicate it is worse than pathology originally confirmed.) We go April 17th to have the post radiation/initial chemo MRI and that's the one that scares the hell out of me because by then we will be able to tell if it's already coming back and if the bs we just went through even did anything.

    I can't speak for my husband (he is the one that has the brain tumor) but I think he would agree with me that it would be worth the suckiness to go ahead with chemo & radiation and see if you can't prevent anything else from coming back. I have multiple reasons to feel this way.

    First, if it comes back that means having to go through another resectioning surgery- i don't know how your surgery was, but my hubby would chose 30 days of radiation and 42 days of oral chemo ANY DAY over the surgery. It wasn't that he had a bad experience it's just that he feels so different after surgery and has side effects that we wonder if they will ever go away (his surgery was 1/26/12.)

    Second, I know from talking to both our medical oncologist (local and at the hospital out of state where we had surgery) and they have both told us that the way the fight brain tumors is with the strongest, hardest most likely to work strategy first in hopes that they can shrink/eliminate the tumor. They don't try the easy stuff first and wait for it to get bigger and bigger before they bring out the big guns. That leads me to believe that effective treatment should be started immediately and only stopped if it proves to be ineffective or if you can't handle the side effects.

    My last reason is not really medical but if I knew i had a brain tumor removed that even had the slighest chance of coming back, I'd want to dive head first into treating that bastard to ENSURE it didn't come back. After completing this initial treatment and waiting for the follow up MRI and to see what next is the hardest...the waiting is the hardest part of all of this for me! At least when R is being blasted with radiation and swallowing poision every day, we know that we are actively, physically doing everything we can to ensure this thing doesn't come back (or at least not right away, lets be realistic after all.)

    So...for what it's worth that is my 2 cents. I am also a firm believer that if you don't agree with your doctors you should get a 2nd opinion. I know from doing research that a lot of insurance companies will actually pay for a 2nd opinion- not just from a different kind of doctor (neurosurgeon, neurologist, medical/radiation oncologist, etc) but from a 2nd team of doctors completely. It might be worth the hassle just to see if they are in agreement with what your original team is suggesting.

    I wish you the best of luck- brain tumors suck that's for sure!

    Emily
  • My husband had surgery right away to save his life. Afterwards he had radiation to help with his almost daily seizures. They don't recommend chemo for what he has at grade 2 because it isn't shown to help. So the only real treatment he has left available is surgery, which is their suggestion anyways for treatment. After surgery they told us they couldn't get it all, so he lives with brain cancer. He's about 1 1/2 years from DX and we wait/watch with MRIs. From others I know going through this, this is common. They give chemo for higher grades. And not sure about trials etc. ??? We have really great Drs too and we never got a 2nd opinion. It does feel passive sometimes. But it is about quality of life as well for us. We are told it's "slow growing", so we will cross that bridge when we come to it.
  • Thank you both for your thoughts and sharing your experiences. I also had surgery pretty quickly after diagnosis (dx 11/28/11 surgery 12/6/11) and flew through it with no side effects apart from fatigue which I still deal with though it's only been 4 months.

    I initially got second opinions on the pathology but from someone within the same system. The neurologist who originally saw me, and who has no affiliation to the hospital I am treated at, told me to get an opinion from this guy who apparently is the "best" in the country. Of course he agreed with the initial patho of the grade 2/3 and wouldn't commit to a firm 3. He told me he would be concerned if I hadn't had a full resection and that he was going to talk with my surgeon. Nothing ever came out of that though (and I did have a complete resection, of course we all know there are cells to small for the eye to see and be completely removed during surgery). I think back to 4 months ago when this all started and I remember being so relieved that I didn't need chemo or radiation and I felt complete trust in my doctors that I decided against getting a second opinion. I am starting to think now that maybe I should, just to be completely sure I am going about this the right way. I don't know how long they keep patho slides for though so I hope this is possible.

    Opening a whole other can of worms of course is that if my second opinions suggested treatment, I don't live anywhere near my family. I had my surgery near where I live now because there is a great hospital near me and that is where I have continued to follow up (my fam came to stay with me during surgery and I moved back home for two months after). If I needed to start treatment though I'm sure my family would make me move home, and then would I have to completely change hospitals/care teams or could I be treated from a distance? And then theres the fact that I really don't want to leave my job, great apartment and move home. But like I said, jumping the gun here, whole other can of worms. I think I may try to start with getting that second opinion though.

    On top of all this worrying I've been doing lately too, my MRI, which was supposed to be this month, I was just told couldn't be scheduled until May 24th! I have been hounding my surgeon's PA ever since trying to get it moved up, I just can't take waiting that long for my FIRST MRI since surgery. Ugh!

    Thanks for the advice & support! It helps having a place to vent where people "get it"
  • Well, my patho is on it's way to two more hospitals and my MRI was moved up to this Saturday so I guess I'll find out one way or another if this passive "treatment" is an ok path to follow...fingers crossed for a clean MRI!

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