Possible brain mets? Need help for a friend.

[Gerri]

Hi everyone,

I am here on behalf of a friend at work. She was dx’d in January of 2008 with triple positive bc. She had neo-adjuvant chemo (TCH) and then surgery after about six months. No nodes were taken until her surgery even though the doctor said there was some swelling. After her surgery the surgeon told her that the first three nodes were “hard” (he thought due to the chemo) so he took more – they were clear. (If no nodes are taken prior to chemo how can they tell if there is node involvement and how is staging done?) She completed Herceptin earlier this year and is now on Arimidex.

Last week she mentioned having weird headaches and slight pain in one side of her head. She was scheduled for a follow-up appointment yesterday and I encouraged her to insist on a brain MRI, exaggerating her symptoms if need be. She is not very assertive and even though she was worried, she was not going to mention any of this at her appointment until I encouraged her to do so. She saw a PA (she has only seen her onc TWICE this entire time) who ordered an MRI and she had it done right away. The PA called her yesterday afternoon (the same day) to tell her that the MRI showed a “small” (1.6 cm!) lesion and referred her to a neurosurgeon. She was given a prescription for 4mg Dexamethasone due to slight swelling in her brain. The PA told her she didn’t think it was malignant but the neurosurgeon should be consulted. I can’t believe that a PA is telling her over the phone that her MRI came back with these results. Needless to say she is freaking out. I advised her to call the doctor’s office and insist on an appointment with her onc so the results can be explained to her by the doctor. She called the doctor’s office back and now has a PET scheduled for Tuesday, July 28, and an appointment with her onc on Aug 4, so she can go over all of the results with her. She also has an appointment with the neurosurgeon before her appointment with her onc. I was hoping I could get some ideas from all of you here before her appointments.

I would really appreciate hearing from our experts here on brain mets. Is there a chance that what is on the MRI is benign? If she does have brain mets what would be the best course of action? She has an HMO but so far has not had a problem getting treatment or tests approved. I don’t think she gets tumor markers done. Should she start?

She is so afraid that she is doomed and will die in a few months. I did my best to reassure her and told her of the many success stories here. I told her that I would ask questions of all you wonderful people on this board and see if I could get some ideas for her to take to her onc.

Thanks in advance for your help. I am so grateful for this support board and all of you wonderful people. You are the best!

[Darlene Denise]

Gerri: I think the first thing to do would be to request a copy of the MRI report. Have this PA fax it to her and read the impression from the radiologist. I am amazed the PA would say she doesn’t think it's malignant, how would she know?

This could be a menginoma which is typically begin, but can cause symptoms and may or may not need treatment. They are common in women with breast cancer. I have one along with brain mets. The fact that there is edema is concerning for it being metastases. The location of the lesion would be telling if it is a menginoma. Although possible, just mets to the brain is not as likely which is why a PET scan has been ordered. If there is no other mets in the body and since this is a singular lesion (breast cancer usually presents multiples) then it may be a primary brain tumor and the neurosurgeon is the key to making that determination. The information from the PET along with the brain MRI will paint the most accurate picture. The only way to know 100% what something is in the brain would involve biopsy or removal.

I don't think an appointment with the onc at this point would tell anything. Onc's don't like to take their limited time playing the "what if" game. They tend to want the scans and definitive issues to work with and then will explain what is really going on. I know it is hard to wait, but in this case, it is a necessary evil. They need both scans and the onc will rely on information developed from the neurosurgeon.

I know of what I speak, the anxiety in this issue is suffocating. See if that PA can script your friend a low dose of Xanx to get her through this time. The Decadron steroid that they gave for the edema is a very difficult drug to tolerate when taken daily and it has a long list of side effects. I encourage you to look them up so you friend won't think those side effects are something else to worry about with her cancer and will know it is the Decadron.

Be sure to let her know, that if she is dealing with brain mets, it is not likely she will die in months. Many women are sucessfully treated and as along as mets in the body are controlled she can expect some longevity. If she learns she has a brain met, visit www.brainmetsbc.org.


Stay strong...Darlene

[Barbara H.]

Please tell your friend that I had a three cm brain met five years ago. I am still here and working full time. You can search my posts. It is very scary, but there are many here who have survived brain mets for years. There is a lot that can done for brain mets these days, and this lesion may not even be that.

Best regards,
Barbara H.

[Bill]

Hi Gerri! Your friend is so lucky to have you on her side. I'm no expert, but I'm wondering why they referred her straight to the neurosurgeon. Wouldn't some sort of targeted radiation treatment be the first thing to try? Maybe I missed something in your post. Maybe the testing indicated that WBR wasn't necessary either. I would want that to "hit" any possible microscopic met. cells in the brain and the visible lesion, and then, if necessary a gamma or cyber knife treatment.

[Believe51]

Gerri, you did not mention how old she is, as we age we have changes occur in the brain that are not always mets. Personally, I have had brain issues in the past. There must be a good amount of edema to be on 4mg of Decadron but the good news is that they only see one. The words whole brain radiation should not even be mentioned at this point and never may. Cyber Knife might be mentioned and if so Brenda has a great video of the procedure that will help her, I will find the post if Brenda doesn't beat me to it. Have her ask the neurosurgeon if 2 mg would be provide the same results for her, Decadron is not always easy. I am with Darlene in saying the control of mets within the body is important and allows targeted therapy to take place in the brain, results...breast cancer as a cronic disease. I think you know I do not say this belittling to the matter at hand. Several doctors from different facilities have told Ed, "If only we could cut off your head, you would be all set." He has been fighting severe brain met situations for two years, it began with 'many numerous salted areas of the brain. WBR, 2 Gamma Knives and two years later, the same situation.

I would surely call her oncologist and ask if he has a neurosurgeon he trusts so she has a choice for later options if need be, always better to have more than one recommendation and an endorsement from an oncologist is more sound IMO. The important thing is she already has an appointment with one and when she sees her doctor she will have an idea of what the neurosurgeon suggests. She will need to have a specialist involved in her care other than her oncologist now and it is vital that she is comfortable with that specialist. Have her ask about the later use of Temodar for brain mets. This drug is not for everyone and there is a window of when you can use is. Keep this drug in her list of options in case she ever can use this.

Of course the pet will help see what is happening in the body. If her body has remained cleaned then the brain can be her focus. This is enough too, this is a frigtening thing to experience but please remind her of our Heros here at our Her2 home. Look at our awesome Warriors, one of the greatest is our Founder Christine. If your friend is in need of a personal journey (and she sounds shy), I would strongly advise to please have her e-mail Joe for their words. Remind your sweet friend that this is just a different part of her journey that you will guide her through all the unknown she faces. She will not be left to perish and as time goes on she will gain the confidence that the brain can be kept controlled if strongly maintained. If the body is not clean then I would look for a more targeted chemotherapy regime (Tykerb/Xeloda), but that it neither here nor there right now. Besides, there are chemo drugs in the works that will be passing the BBB and can be options for others in the near future. Either way I would ask how the oncologist felt about adding Herceptin again. Breast cancer that enters the brain has been known to play hide and seek from brain to body to brain, etc. Then sometimes it leaves the brain never to return. Please urge her of the importance of becoming more assertive.

I send love to you Gerri, you are such a wonderful support to us all. I feel that with you as her friend and part of her support, she will do fine. Again Sweetheart, I do not say this lightly, we know the seriousness of breast cancer mets. I will be following her journey now so please update us as she goes. I will keep her in my prayers as she faces appointments, scans and the waiting......Uggh! Maybe you can teach her to breathe, it is a frightening time for her and we all know how important this is. I hope some of this post can help, I have been so sad myself and my mind has been jumbled lately. One thing I do know is that I love you and wish you strength for helping yet another Warrior through the winding roads of bc.>>Believe51

[Gerri]

Thank you everyone for your thoughtful replies. Darlene and Marie you have given me a lot of information to pass on to my friend. Barbara, I have already passed on your message; I knew she would need to hear something like that right now. Bill, I appreciate your thoughts as well. I am going to pass all of your words of hope and wisdom on to her.

Marie, I believe she is about 53 years old, give or take a year or two. At the beginning of her journey, her onc told her she was either a stage 1 or 2. Her tumor was estimated to be at least 4cm. From what I understand, that would make her at least a stage 2A, and the fact that her onc had said she had swollen nodes prior to chemo makes me wonder if she had any node involvement. That is the part that has always confused me. If she had possible node involvement, but after chemo the first three nodes were hardened, is there any way to tell if there was node involvement? How is staging done with neo-adjuvant chemo?

I'm glad that she followed my advice and called for an appointment with her onc, at least that got her a referral for a PET scan. I agree that she should seek more than one opinion, but I don't know if she will feel comfortable doing so. Plus, with an HMO, your options are limited to the doctors within your group. (I love my PPO!!!) I will check with her to see how she is doing on the Decadron. I remember the days/nights when I was bouncing off the walls - not fun.

Thanks again everyone, I really do appreciate all of your advice and encouragement. When I wrote asking for the experts to weigh in, I did so knowing that your expertise comes from personal experience, something none of us want. It makes me so sad that so many of you are fighting so hard for your life - or in Marie's case, for the life of the love of your life.

I will keep you posted. My love to you all.

[Joan M]

Gerri.

You've been really supportive of your friend in helping her to be more assertive.

My brain tumor was close to 3 cms and therefore too large for good control via stereotatic radiosurgery (SRS) alone, which is one dose of radiation to the tumor. As a result I had surgery followed by stereotatic radiotherapy (SRT), which was five doses of radiation over the course of a week.

Although it can be difficult to tell whether a brain tumor is a bc met rather than a primary cancer, many bc brain mets are cystic, and your friend's report should say whether her tumor is cystic.

All primary brain tumors are solids and many brain mets are also solids. Bc brain mets however can be either solid or cystic. That is, they can be sacs of fluid rather than solid masses. Mine was.

This distinction in the report might help in determining whether the tumor is primary or a met.

I had my surgery last October and my SRT in December, and a recent brain MRI shows that all is doing well.

Joan

[Gerri]

Joan,

Thank you so much for responding to my post. That is very interesting information about the differences in tumors. I am so happy that you have had good results and will pass this on to my friend.

[juanita]

just wanted to add some prayers for your friend!

[CourtneyL]

Adding prayers for your friend too.

Please let your friend know that brain mets are not an automatic death sentence. There are so many things that can be done to fight them. I had all 10 of mine Gamma Knifed in April and am doing well today.

Please make sure your friend gets in to see a radiation oncologist who can advise her as to whether WBR or stereotactic radiation are options. There are also quite a number of drugs that cross into the Blood Brain Barrier that can work to shrink tumors and prevent new ones from forming. I take Tykerb/Xeloda for this purpose in addition to Herceptin.

Sending hugs and prayers your way and to your friend. She is lucky to have a friend like you!

[Gerri]

Hi Courtney,

I actually told my friend all about you since you have had such amazing results. She needs to hear stories like yours to give her hope (just in case it is mets). I'm still hoping that this is all just a scare and she will be declared disease free - something we all wish for everyday.

Thanks so much for your input. I am so happy that you are doing so well.

Take care,