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It's A Brain Thing


Margaret

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I have been dealing with a bump on my forehead for a while and it has finally been determined through a recent brain MRI to be a brain met, rather than a bone met. The MRI also indicates that there may be the threat of more developing (hints of small blood vessels forming).

I met with the radiation oncologist on Thursday and he seems intent on whole brain radiation. Thus far, I have had no radiation whatsoever. He seemed unenthusiastic about Gamma Knife or as the procedure at UCSD is called stereotactic radiosurgery. I had hoped for that rather than WBR, but he said he wouldn't be comfortable without WBR.

I plan to ask my former medical oncologist at Cedars Siani for a referral there to a radiation doctor, just to feel more comfortable about whatever my decision. I know, Karen, that you declined WBR, but then that was after surgery. I'm wondering if others have opted for stereotactic radiosurgery because of one or two mets and then not had the whole brain radiation. As I told this doctor, I would like the most conservative approach on this...trying to protect what thinking abilities I have left!

Margaret

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Margaret,

Am so sorry about this turn of events. Earl has had a recurrence of brain mets and had already had WBR in Nov 02.

We met with the radiation oncologist. He talked risk/benefit on both WBR and the stereotatic. I got the impression that for just a few tumors that he preferred the stereo. but said that there is a 5% risk of edema for each tumor treated. He said he was a little nervous about WBR being done for a second time but it could be a consideration.

Unfortunately, Earl has had no treatments because it now appears he has hundreds of very small brain tumors.

I would definitely discuss all options with the rad onc.

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Oh Margaret, so sorry to hear the latest development. Ginny said basically what I would say as far as WBR vs stereotactic. As you know every case differ. I do agree with you that it is not a decision to take lightly. I wish you peace and the wisdom to make the decision.

love

elaine

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Dear Margaret,

I'm so sorry to hear your news. :( Things have been so so for you for a little while now, and I sure wish it would continue that way for you.

I also have a little bump on my forehead on the right side of it. They tell me it's nothing to worry about ! :roll::shock:

My prayers are coming your way my friend. Please keep us posted.

((((((((((((((((((((MARGARET)))))))))))))))))))))

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Margaret,

I would definitely recommend the Gamma Knife or similar procedure. When I was first diagnosed, a small brain met was identified with a little edema. It was treated with the Gamma Knife in Nov. 02 and the follow up scans now refer to it as an old burnt out met. In May 04, I was treated again because two addl. mets were found (1 < .5mm and the other .6mm). In both cases, I went shopping the following day after treatment (for most of the day) and travelled for a long weekend to visit some relatives (2.5 hours away from my home).

The radiologists will tell that the WBR procedure gives you more of a guarantee in that it kills all cells existing rather than just the tumor identified. I have been told that it is only good once. If there is reoccurence other measures will have to be taken. I have also found out that it typically only lasts about two years.

I really felt that I did not want to use the once and only once alternative so early in my treatment. I did not like the thought of possible permanet (sp?) hair loss and loss of short term memory. I am a mother to an eight year old juggling many other things so short term memory issues already exist for me. From this board, I have found that these side effects seem to go away in time. In my local support group, we had a member with reoccurence of brain mets not even 18 months out of WBR.

TBone wrote a post awhile back describing his experience with WBR which I found very informative.

I know that WBR will be in my future but I am hoping that is still far out since I know that it will impact the quality of my life. I will do it when I need to. I am waiting on results from my most recent brain MRI which will tell me if the last Gamma Knife did its job and hopefully no new mets have appeared.

I am sorry for the long post. If you have any specific questions to the Gamma Knife, please do not hesitate to email me directly.

I wish you the best with whatever treatment path that you choose.

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Margaret,

I would definitely recommend the Gamma Knife or similar procedure. When I was first diagnosed, a small brain met was identified with a little edema. It was treated with the Gamma Knife in Nov. 02 and the follow up scans now refer to it as an old burnt out met. In May 04, I was treated again because two addl. mets were found (1 < .5mm and the other .6mm). In both cases, I went shopping the following day after treatment (for most of the day) and travelled for a long weekend to visit some relatives (2.5 hours away from my home).

The radiologists will tell that the WBR procedure gives you more of a guarantee in that it kills all cells existing rather than just the tumor identified. I have been told that it is only good once. If there is reoccurence other measures will have to be taken. I have also found out that it typically only lasts about two years.

I really felt that I did not want to use the once and only once alternative so early in my treatment. I did not like the thought of possible permanet (sp?) hair loss and loss of short term memory. I am a mother to an eight year old juggling many other things so short term memory issues already exist for me. From this board, I have found that these side effects seem to go away in time. In my local support group, we had a member with reoccurence of brain mets not even 18 months out of WBR.

TBone wrote a post awhile back describing his experience with WBR which I found very informative.

I know that WBR will be in my future but I am hoping that is still far out since I know that it will impact the quality of my life. I will do it when I need to. I am waiting on results from my most recent brain MRI which will tell me if the last Gamma Knife did its job and hopefully no new mets have appeared.

I am sorry for the long post. If you have any specific questions to the Gamma Knife, please do not hesitate to email me directly.

I wish you the best with whatever treatment path that you choose.

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Margaret,

I too am so sorry to hear this latest update. I know that you will beat this bump in the road, just as you have beaten all the others. Whatever plan of action you and your team decide on, remember to stay healthy and strong both mentally and physically. You are on my mind...

Jamie

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OH Margaret, I'm sorry. SOunds like you have a good team, gather your options and I'm praying for a successful treatment path to remedy the met.

God Bless~ We love you.

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I'm so sorry about the bad news Margaret :-(.

As for me, it was pretty much decided for me as I was in shock after revelation of cancer being back. I underwent WBR followed up by radistatctic surgery.

It all turned out alright, but I must say, if I had been informed of such a short lapse of time before recurrance I might had changed my mind.

Again, I was in shock. Anyway, I want very much to say that my prayers are with you day and night.

God Bless us All,

Francine

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Hi Margaret,

I had both WBR & Stereotactic 2 weeks after WBR. On occaision I have a blackout where I don't remember a phone conversation from the day before. I write everything down now.

The MRI following the WBR showed it to be clean & we went ahead & still did the stereotactic. Hope all goes well for you. Rachel

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Hi Margaret,

I am so sorry to hear this news. Think positive, this is curable. How large is the met? Did they say if it is operable? I can refer you to my nuerosurgeon (the best in the Inland Empire, surgeon at Loma Linda for adult and pediatric and he is a teaching professor) and also the radiation oncologist (he is at City of Hope director of the department, specialist in stereotactic radiation) if you want a second opinion. Both of these men are phenominal. Don't rush into treatment without a 2nd opinion. I will call you tomorrow and I can give you all the information. You are always in my prayers and I'm here for you...

God Bless and gentle hugs,

With Affection and love,

Karen

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Guest bean_si (Not Active)

I would probably opt for stereotactic but I have no idea if that's the best decision. I'm kinda surprised that the doc opted for WBR. My rad onc said stereotactic is used whenever there is just a couple mets. But then some docs believe wholeheartedly that WBR is of great importance in preventing other mets.

Wow. What a tough decision. I'll pray and send positive energy your way.

I'm trying to remember what I was told about WBR vs. SR. WBR is a much milder dosage. Supposedly it only causes swelling of the brain in the area of mets. SR is a higher dosage and targeted. It is more likely to fry the met. It often causes swelling but pre-treatment of cortisone helps with that.

Only so much radiation is allowed to the brain so if you have WBR and later develop mets it is less likely that they will give you a second dosage of WBR. Selective stereotactic radiation could still be used on individual tumors but if there are a great deal and you've already had WBR, chances are neither SR nor WBR will be available or the best treatment for you.

I'm thinking out loud. Your doctors should have more facts available and should help you make the decision. Here's hoping.

Cat

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Margaret,

I see you are in Carlsbad, if you want some names at Hoag which is a bit closer than Cedars, PM me. They are absolutely wonderful there. Cedars is awesome too, we had her surgery there, just a bit further to drive.

Good luck!

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I have been reading a lot about whole brain radiation treatment (WBRT) and Gamma Knife. The www.irsa.org website is the most comprehensive website about brain tumors.

The rationale behind WBRT seems logical - eradicate the microscopic cancer cells circulating in the brain. Kill those cancer cells before they make more tumors. The possible long term and irreversible side affects are very disturbing - but what are the alternatives?

Then I read a few research papers which debate WBRT plus Gamma Knife vs. Gamma Knife alone. They state that there does not appear to be any advantage to doing WBRT, even for those with multiple tumors.

So what does this all mean? At the very least, I can conclude that there is serious controversy regarding the value/need for WBRT. Because of that controversy, I would hope doctors would (1) inform patients of the serious side effects of WBRT and (2) inform them of alternatives.

There are many ongoing clinical trials which are addressing this very issue – is WBRT really advantageous?

If my memory serves me well, I don't think anyone here who has had Gamma Knife regrets it. On the other hand, these seems to be some posts from people here who are doubtful about their WBR, including me and my husband.

I second Maureen's philosophy. Go with the least invasive procedure. You can still choose the WBR later if needed.

Terry

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Thank you all very much for your thoughts and for the much needed information and excellent web sites. I am going to Cedars for a second opinion on this matter as soon as they can coordinate an appointment with my former medical oncologist (who also wants to see me) and the radiation oncologist that he is having me see on the same day...as it is a hundred mile trip up there for me. After two years plus of fighting this disease, I don't rush into anything and I sure like to know as many of the side effects as possible. You all for just the very best and I appreciate your input.

Margaret

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Margaret,

I am sorry that this has happened. I've been dealing with what I'm told is a benign brain tumor for a long time (meningioma), but it has given me the opportunity to look into a number of different treatments. I've decided that if and when I develop brain mets I'll be going with intrathecal chemotherapy in lieu of whole brain radiation treatments. The damage to congnitive functions appear to me to be less, both short and long term. Just my 10 cents on the subject.

(((((Margaret)))))) just wanted to send the hug along, too.

Much Affection,

Fay A.

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