Brain Mets - Add me to the list

[StephN]

I have begun the new year by learning that I have another hurdle to get over.
I have annual brain MRIs and good thing, as my 2 lesions were caught before I have symptoms and we have the best chance at control without much chance of complications.
Before I launch off with my story, I want to THANK all those caring and sharing women who have posted in such detail their experiences with Gamma Knife, WBR, etc. over the past year or so. This knowledge has given me power to keep my fear and worry under control so that I can do what I need to do in a calm manner and not upset my family any more than necessary.
My med onc and I decided that checking 2 markers would not be a bad idea, so that was started over a year ago. We added CEA to CA27-29. CEA has been well under normal range until Oct, when I went up to 4 (5 being the cutoff for normal). In Nov, it rose to 6.3 and in Dec. to 9. 27-29 has been in my normal range of 17-24. A PET was scheduled to catch from my earlobes on down to my thighs (looking for a lymph node or something).
My PET scan on the 23rd was "probably negative." I had a chest/abdoman CT to get a better look at an area above my lumpectomy and below my collar bone. That showed all clear - most likely what they call "radiation flare." So, nothing there to account for my CEA marker going up past the normal range. Herceptin is still doing its job where it can get to - NED for 30 months now below my neck.
But, the brain MRI on Tuesday afternoon came up with 2 lesions in my lower brain or cerebellum. One is medium size at 3 cm (a little over an inch) and I have some swelling associated with that. The other is tiny at 5mm and farther away as a separate met. I have already had a full consultation today with the Gamma Knife specialists associated with the U of W. They convened a Tumor Board with all the neurosurgeons and rad oncs to discuss my case. It turned out that it is very operable, but they are recommending the Gamma Knife. This facility will do GK on lesions at 4cm and even more "with caveats." They are perfectly happy with the size and location of my brain tumors for their procedure.
I feel totally comfortable with this, and liked the team that I met (hubby agrees and was complimenting me on my expertise with the docs!). I was able to converse freely with them and once they understood that I was not a complete novice about this, they came up a level and let me ask many questions or interrupt as they went along.
They want to get me in ASAP, within 10 days. The wonder of this is that I am showing NO symptoms. I was given the standard neuro coordination/strength test by 2 different docs and they were both surprised at how well I did. No Karnofsky Performance Scale needed.
I am allowed to drive, but will try to keep this to a minimum, as there is a very slight risk of seizure. But I am already on the Dexamethasone for the swelling so they feel this is not much of a danger.
My main tumor is in the area behind my left ear, and even though I know where this demon is, I can't detect a thing.
I will have a consult on Tues. with the other local Gamma specialist - a woman who has the longest track record in this area. My GP likes her a lot. She is in my general medical group and not my cancer center group. I probably will stay with who I saw today, but maybe not. Just think it is a good idea to check them both out.
Both centers have the latest version of the Gamma Knife - C, installed this summer. They use the latest contrast solutions and improved helmet so this gives me a lot of confidence. Cyberknife is not available here yet, but these rad oncs are very skilled at the GK and mention cyberknife as a better use for other parts of the body where very controlled pinpoint radiation is in order.
Tomorrow (Friday) morning I will have my regular 3-month visit with my med onc. We will go over all this and we will also discuss other things, such as I want to see a lymphedema specialist just for educating myself better on this subject, even though I don't have this problem.
Any comments, suggestions, questions are welcome. My mind is like a sponge these days! Info going in - not wringing out!

[*_Janet M_*]

Steph, I am sorry to hear about the brain mets. If you don't mind me asking what was your history of diagnosis. nodes etc. Why were you having an annual brain scan - any reason why you have one each year. Also what is gamma knife - i have no idea. Also why were the other tumour markers recommended. I only have ca 15-3. Janet M

[Sheila]

Steph
So sorry to hear of your news of brain mets...seems like that is something many of us will have to deal with. You show us all the importance of those MRI's.....my prayers are with you and with your strength you WILL overcome this setback.
Hugs
Sheila

[*_Sandy H._*]

Steph: I am so sorry to hear of your brain mets. I know you will over come this like you did the other. You have been and will continue to be in my prayers. This shows the rest how important it is to be pro active and we need to stay on top of this disease. I am working with a young girl regarding this issue. She is beginning to see what can happen if we don't. You are so correct in saying this board helps us so much. I am certainly following the posts on brain mets just in case I have to join the list. Sounds like you are in good hands and I know Christine will be there if you need her. For some reason I can not respond to my e-mail this morning but I did get it. Will reply as soon as I can. Sending you well wishes and big hugs today. Sandy

[Lolly]

Steph, I'm so, so glad you are proactive in your follow up care...what a difference it's going to make for you in surmounting this obstacle. I'm amazed at your fortitude.
I am keeping you in my thoughts and prayers.

Love and Hugs,
Lolly

[Jackie]

Steph, I know it's a scarey ordeal (went thru it myself last summer) but you sound informed and really to accept the challenge. Cyber knife might be prefereable from a patient comfort point of view, but like you, it is not performed in my area and I decided in favor of dealing with local drs I liked and trusted. Only word of advice (from a needle phobic person as I am) I would recomment having a couple of Ativan up front to help ease you thru the halo attachment process. That spooked me a bit and having something take the edge off helps. Your spots sound very similar in size and location to mine, 1 of which is gone now and the other almost gone. I think stereotactic surgery is a wonderful option, but we must be vigilant and catch these lesions early enough for it to be appropriate.
Good luck to you...you'll be glad you did it after it's over!
Jackie

[Lisa]

What a surprise, Steph! But welcome to my boat. Unfortunately, there's room for many more.

Like you and others, I had NO SYMPTOMS. I was scheduled for my 3 month CT scan and requested an MRI for the brain since I knew they were more sensitive. I ended up with from 7-20 small tumors and had to have WBR as you probably remember. I wanted Cyberknife, but the size/amount made me a candidate for the very thing that is demonizing Mary, a tumor sliding down the spinal cord.

You sound right on target about everything. This will be easy for you, I'm sure. You know, interesting about your tumor markers. Mine actually declined around the time the brain mets were discovered. Right in the normal range. But they started going up after treatment, which can happen with radiation. Of course, I also came up with the lymph node mets shortly thereafter.

I wish you the best for your treatments and do keep us posted.

Love and healing light,

Lisa

[AlaskaAngel]

I can't put it in words, Stephanie. All I can think of is how unfair it is. As if that makes any difference.

I want to thank you for sitting down and writing so clearly about all of this for the rest of us, knowing now yourself what it is like and especially knowing firsthand that you have no symptoms.

I hope the strength of your abilities to move forward in an intelligent and realistic way stays with you through it all.

Recently in my work I ran across a case in which a woman had surgery for something entirely unrelated to cancer. She'd had a mastectomy about 5 years ago for bc, and her cancer at that time was such that no chemo or rads were recommended. In spite of that, she now has had recurrence. There is no "cure" and each of us has to find our way through it all, but thank you for holding the light up so that we can follow along with you as you go.

AlaskaAngel

[jojo]

Hi Steph,

We both have brain mets in the same location behind our left ears. Please consult with your rad doc about your head position while doing gamma knife, because in my case, it just so happened that gamma knife people had a little trouble putting my head onto the machine, due to my short neck. Eventually, they had to reposition my head manually, not electronically.

I also don't feel any symptoms from my brain met. The location of our tumors should not affect any of our bodily functions. Do double-check, though.

Good luck!

[lolam]

I am sorry that you are faced with this. Is it just this board, it seems like brain mets are wayyyy too common now. I was toying with the idea of not asking for an MRI this year as I feel kind of paranoid for asking for one. But you and all the others have laid that to rest. My onc will go along with it so that helps, even if we make up reasons for the insurance co. I really hope someone does something about that so that we can have that scan along with so many others that they DO approve just for scanning purposes.
I will be praying that you will have all the wisdom and peace that you need to get through this. I am happy to hear that you have found doctors you can trust and machines to do the job. Over here in Spokane we also have all we need to get the job done. That gives me relief even though I may never need it.
Some day in the future we will have statistics of how many of us get brain mets. I know we get them because we live longer now because of herceptin. But if the percentages are extremely high for us with her2neu and brain mets, maybe they will step up serious research to help us prevent them.
Some of you gals just end up being pioneers but that is the nature of the game we play with the powers that be. So I pray that so much grace and healing will come to you for your sacrafice for those of us who follow!! I hope someone is listening to our pleas!!!
Hugs, Lola

[StephN]

Hi dear ones -
I will try to answer all the questions, but first want to thank you all from the bottom of my heart for all the love and support.

First, Janet, briefly on my history. (My story of survival is on this site under Community/Member Stories if you want more detail.)
Dx Oct of 2000. Lumpectomy - lower axilla excised - 8 of 18 nodes positive.
Her2+++, tumor high grade.
12 weekly Adriamycin, 4 week break, 4 taxotere, rads x36
Put on 3-month followup with labs and markers, as identified as a high risk patient.
Liver & bone mets within 6 months of first chemos. Trial with Taxol, Navelbine and herceptin. Was clear of mets after 27 weekly treatments. Been clear since July of 2002. Annual brain MRI as a precaution - I made up some symptoms so the doc could put it in his report so the insurance would pay. But med onc and I both knew the brain was perhaps the next likely place since I had responded completely to the trial for liver mets.
There are some links to Gamma Knife in this site that will explain it more detail. It is noninvasive (no actual "knife"), but a blast of gamma rays that kills the tumors.

Jackie - Your detailed post after your GK treatment really made an impression on me those many months back, and the fact that you posted immediately after the procedure took most of the scare away. The fact that we have to "wait and see" does not bother me as I have now heard from so many on this board who took the GK route successfully. Sorry you have a new problem, but seems there is a good treatment. Again on the forefront, so we will be wanting to hear about it. ;)
I am not needlephobic, but have a concern about staying so still (under pressure) for so long, as the Dexamethsone is making me a little restless. They will give some mild sedative, but not sure what. The neurosurgeon already told me about the little ball point pen points that will be used to hold the headpiece in place. I said after all I have been through I an not worried.

JoJo -
Fortunately my neck is not short - not a lithe swan neck either, but adequate and not deemed to be any problem. The team only mentioned that if they find more spots on the fine cut MRI on treament day, they may have to reposition things to get those, as they will be positoning to get what they currently know about.

Lisa -
I posted about the tumor markers in answer to Rozebud's poll above.

I will print out all the well wishes and put them in my "basket of love" that I have kept all the cards and emails in since I began this whole fight over 4 years ago. That basket sits on a shelf in my office right behind the wall where I lay my head every night. I am now needing a bigger basket!!

[Celina]

Gosh, Steph, I was surprised to hear this...given that you've been so well. I think that it is encouraging to know that you caught them early enough and it sounds like your "plan of action" has been well thought out. This has been such a success treatment for many and it will be for you too. Keep well..your in my thoughts,
Celina

[al from canada]

Dear Steph,
I was very distressed to hear about your mets. I'm sure you've taken courage from Mary, Lisa. Janelle, Hope and the others, who have lost NED, and you are an inspiration to us all. Your resolve to beat this and your "kick-ass" attitude leaves no question who will be the winner! Please keep-up the fight!
Al

[mastewa]

I had 4 small brain mets in April of 2004, which they treated with stereotactic radiosurgery, which I believe is similar to gamma knife. They put a ring on your head and it's a one-day treatment. I have regular "fusion MRI's" every 3 months (they are smaller slices, so they can find smaller tumors). Up to September of 2004, they were clean and getting almost "normal." But in December of 2004, we were shocked to learn of 3 new tumors. We could have done stereotactic on these, except the smallest one (2-3 mm) was in the brain stem, so I'm undergoing WBR for all three. I've already had 2 of my 15 treatments and so far so good. The doctor expects these 3 tumors to disappear so I'm hoping. I also had bone mets, which are now in remission and no other organs are affected. I'm on arimidex, herceptin and zometa (h & Z every 3 weeks). And now the WBR for 13 more treatments.

I would think since you've had brain mets now, you should have these brain MRI's every 3 months because anything that shows up in that time frame would be small and treatable with gamma or stereotactic (unless you're like me and have the darn thing in the brain stem!!).

Take care. And if anyone has good things to email me about WBR, please do so, because I'm nervous about how I'm going to be when I'm done with all this. I'm 38 years old and still work full time as a paralegal (I took medical leave for the WBR and will be back in late Feb.) and hope I'm still able to function OK after WBR. The doctor assures me that I'll be OK, but I'm still nervous about it all. Thanks.

Mary in Cincinnati
smarycinc@aol.com

[*_Esther_*]

wow Steph, you are an inspiration in the way you are handling this. I know that after hearing other's stories of dealing with brain mets, i feel alot calmer and better prepared to deal with it if I should be diagnosed with brain mets in the future

In Feb it will be 1 year since my last brain mri, and your story will ensure that i follow through and have another one right on time.

Keep us posted Steph. I'm sure everything will go well for you and we will have another example of us Her2+++ ladies kicking cancer down.