Question on brain mets

I have a question. I had a single brain mets, near the surface, removed the old fashioned way the beginning of June. Recovery has been pretty speedy and I've been pretty much normal since 2-3 weeks post-surgery. That leaves about 1 week I've been more or less normal.

So I have one day where I can FEEL the swelling and I tend towards keloids anyway so I am aware there must be a darn good reason for the itch. What about the intermittent swelling? I know it must be normal post-op but it's 4 weeks post-op and I haven't 'felt' it in over a week. If it were any worse I'd or if I wake up with it tomorrow I'd wouldnt' hesitate to call the doctor -- I don't feel like it's serious -- but I'm curious as to the normalcy of this.

I'm also ready to see if any others would help me out weighing in on the radiation issue -- they took out a single mets and the neuro-surgeon says we can radiate any time after this past Monday, the onco says nah we think we got it all but it's up to you -- what does anyone think who has or has not had spot radiation after removal? 10 treatments Granted, my doctor used to pretty much say I'm dying live with it (that's an exageration) but he now says we wouldn't have bothered to take it out and then let you die, he agrees with me that we approach this cancer from a new angle. For the record, I just started chemo (alimta) for mets to the liver and adrendals.

I appreciate any help.

(I do wish I knew how to write shorter posts lol)

Laurie

By cuddles53
Posted July 2, 2009 at 10:58 am
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Dear Grannie alias Laurie,
I am so sorry about all you are facing. I am saying my prayers with you included. I don't have the answers you seek, just to trust in your own instincts, you have done so far and made out good, so I am just letting you know, I am here for you emotionlly. I can't even imagine how difficult this is on you. I have read your posts, and read your comments, and envy you with such a great knowlwedge, and you use it wisely. You help so many others on this site, you never seem to be afraid ,yet I know you must ber. I want you to know you can let it all hang out, and cry your eyes out, and I am here to listen and comfort you. Again you are in my prayers, and I am praying you get a full recovery. I think the doctors would not have done your surgery if they didn't hink it would work. I am wondering about this spot radiation myself. It would seem to me good, if there are microscopic particles of cancer seeds, this may be the insurance coverage you need to ensure nothing further develops, however why they are asking you is because they think you make intelligent choices. I really think the way you carry yourself, and your expressions, and total calm attitude in regards to to your illness, allows these doctors to actully have faith in your decision. this is a very hard one, but honstly do what you believe your gut feeling tells you.
Take care and of course
God bless Sandy

By misself
Posted July 2, 2009 at 6:00 pm
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Ddear Grannie or Laurie,Sandy says it very well.Follow your heart&head.You have much wisdom and it sounds like your Dr.has learned from you over your time&teamwork.I will say prayers for you.Andi B

By sheilake
Posted July 2, 2009 at 6:16 pm
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I probably shouldn't be offering an opinion since I haven't had radiation, but here goes. Several people in my lung cancer support group have had brain surgery , radiation, Whole brain radiation and gamma knife. The people who have suffered the fewest "after effects" have been those with the most targeted radiation (Gamma knife). I'm really not sure why they are talking radiation for you if they think they got all the cancer with the surgery.

Hope you both have access to Gamma Knife if you need it and have access to second and third opinions. Wish you had a doctor who was more enthusiastic about keeping such a wonderful woman alive.

Sheila

By cards7up
Posted July 2, 2009 at 8:05 pm
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My question is why aren't the doctor and radiologist talking to you together? It doesn't make any sense for you to get two different opinions. You also shouldn't have to go back and forth between them. What a pain in the you know what. Good luck!

By Granny888
Posted July 2, 2009 at 10:44 pm
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Sheila, thanks so much for the input. My doctor has enthusiasm he just tempers it with a large dose of what he considers reality -- while knowing that I'm not a statistic that still is (plus experience) what he has to go on. I consider all opinions quite intimately -- in the older days especially when it came to brain cancer or a single brains mets and not necessarily stage IV they would cut it out and then spot radiate the whole area to be sure they got all the seeder cells. He's pretty sure he got it all so I don't feel pressed.

As for why they don't talk to me together, the neurosurgeon and the oncologist don't share an office! Plus if you've ever worked in a hospital even when I was in there they had varying schedules. They do talk. And whoever sees me next talks to me.

My doctor has told me 'palliative care' all along, we joke about it. He knows how I feel. He knows what he's seen.

Of course I'm the one who makes the decision. If either doctor felt really strongly I'd listen. Well, I do listen anyway.

It's a 'just to be sure' measure (the radiation) and I'm already stage IV, I think I'll worry about the mets and worry about the brain if/when it becomes involved again. That is what my doctor recommends (while telling me after removing a brain mets he intends to keep me alive).

I really do appreciate those opinions.

And I do have an excellent second opinion doctor, at John Hopkins, at my own doctors insistence I might add -- and they actually talk on the phone. So I might even call him next week. So far I am pretty sure I don't want follow-up radiation.

I thought about this in the hospital -- did I want to take the extra time, money, travel, to have it taken out by radiation (gamma knife)? I thought at the time if it was an option where I was (a small but top 100 hospital) I think the doctors would have mentioned it.

Because of the location (of myself and the mets), was it the best choice -- just to have it cut out. I went with taking it out, because this thing was just sitting at the base of my skull causing me intermittent problems for years. I was just happy they finally found it. It didn't show up on any mri or ct of the brain for over a year that I "knew" something was there, longer since I had symptoms.

Maybe it's because I'm old, I dunno, I trust a knife more than I do radiation??? Not completely true. I've seen some bad things with radiation. I'm sure gamma knife is awesome -- anything deeper and it would either happen or I'd be going somewhere where it would happen.

Thanks -- any more stories and I'd still like to hear them, especially from prior cut-away patients -- how long it took to recover. I take it no one has heard from Toddy? I don't like not hearing I know she was having a hard time.

By Pat-M
Posted July 3, 2009 at 8:29 am
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Hi Laurie, maybe I'm not getting the story right, but if you are having swelling, do they not have you on steriods? I was on 18 mg of dexamethasone for 2 months following my sterotactic (gamma knife) treatment for 2 brain mets. I was told specifically it was to keep down any swelling. (hated the side effects of steroids, but they did do the trick) And I've been on Kepra ever since as a buffer against any seizures that could crop up. If what your are referring to is whole brain radiation, I've read several posts here about it. I'm leaning against it. Even the gamma knife, which was targeted radiation to the two small tumors, left me with cognitive problems, in particular short term memory issues. As I understand it, the long term effects of whole brain radiation can be pretty severe. Many doctors are moving away from that and just using newer technologies to spot-treat tumors as they pop up.

By Granny888
Posted July 3, 2009 at 12:23 pm
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No I don't think I'll ever do WBR.

And I have a really hard time with steroids, harder than most -- 2-3 days I'm hyped then I sleep off and on for an indefinite period of time. So I was off steroids within a few days of surgery, they only give them to me when they absolutely have to. It was just that one day so I think it was just part of the process, it wasn't bad just noticable. I took 4 mg 4 times a day very quickly went down to 3 x a day (within a day) until surgery, then was weaned off watching my symptoms. A lot of people hate them, I do a little more than hate them. In fact, very little more :)

By gpawelski
Posted August 20, 2009 at 9:23 am
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Laurie

Sometimes necrotic tissue (which has a mind of its own) forms from surgery as well as radiation treatments (even chemotherapy) which can affect the patient.

Focal necrotic tissue around the excised tumor bed can develop after surgery. Some of the side effects are very similar to Chemobrain/Cognitive Dysfunction. Long-term effects can be initially managed to some degree with corticosteroids and surgery to remove necrotic tissue.

The neuro-surgeon was inside the brain. He/she is the one who knows what margins that were obtainable. If there is a recommendation for radiation treatment it is usually "focal" radiation to the local tumor bed, which is 2cm beyond the excised tumor.

Welcome to Inspire!

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