Breast Cancer 9/09.......now brain mets

My daughter is 34 years old and had a mastectomy for a 3 cm lump in September 09.  She is ER/PR negative and if I remember correctly HER-2 unequivocal/positive.  Last week she had a biopsy for a lump at the incision site that came back "abnormal cells" so they are doing more testing on that biopsy.  Then the day after she was taken to the ER with sever headaches.  After a CAT scan, they said that they thought she had brain mets because there were 3 spots on the scan.  They confirmed that with an MRI the following day, which showed 2 tumors.......one in the front and one in the back of her brain.  The doctor described it by comparing her head to a watermelon and said that they were in the white part of the melon....one of the layers surrounding the brain.  She is home for the weekend and on anti-seizure meds, steroids and pain meds when necessary.  We see the radiation oncologist tomorrow, but I am limited in what I can ask in front of her as I don't want to upset her more than necessary.  Is WBRT the next step?  What type of timeline are we looking at for her.............she has a 4 1/2 year old little girl and we're trying to prepare for whatever is down the road for them and us.  Is her prognosis poorer because of the short time that it took to metastecize?  Is it likely for her to have other sites of mets even though she had scans back in March that were clear?  She needs to work in order to keep her benefits.........is it possible that she'll be able to work "some" while going thru the radiation?  She doesn't qualify for disability, so she is worried about all of that also.  Thank you so much for any help and info!

[cb3228]

I need to correct something in the above post..........she is triple negative.  So many things happening, I just had that wrong.

[Ma111]

I am so sorry to hear about your daughter. Most  of your questions I cannot answer.
She might be elgible for Social Sercuity Disability benefits.

[katarina777]

Hi, I am so sorry about your daughter and the whole situation, and for you, and...

Your daughter's situation is very serious. Triple negative is bad, and also, as you asked, the fact that the cancer has come back so soon after initial diagnosis also does not make for the best prognosis, not to mention that it has spread.

I feel confident about telling you some things I believe you are interested in hearing about because I am somewhat in the same situation as your daughter. after very aggressive initial diagnosis and treatment, my cancer also spread to the brain last fall. (09) Since then it has also spread to liver.

my mets were in the brain stem and non operable, so I had full brain radiation. did your doctor say your daughters was also non-operable?

I think your daughter should be able to work some while going through radiation. I felt better after starting radiation than before. I had to reduce the dose of the decadron (steroid) as it was making me insane and I could not sleep. It helps greatly with the pain though, although I did not have severe pain.

A couple of weeks after finishing radiation I felt my memory troubling me again and I felt the cancer also going to other places. (losing a lot of weight and nausea often means it went to the liver)

I had a repeat MRI but to this day I do not understand what it meant and I don't think anyone did. the lesion in the brain pretty much looked the same as before treatment. The way I understand it it is hard to distinguish between tumor and scar tissue, and I got no answer to my question if perhaps the tumor had gone away and then grown back. I was told the tumor would be wiped out. I do not know and that is because they do not know.

I was getting much sicker with the liver mets, and this is important for you to know, (for you to push the testing should your daughter start feeling sicker) but nobody seemed to be doing anything, and for a few months, even longer, it was not clear from the scans if these were actually liver mets or other. A PET scan finally proved it.

From what I have learned, it is not as crucial to act immediately after your cancer has spread than it is initially when you are first diagnosed. this means that had I been diagnosed with, and treated for, my mets sooner this would have not made a difference in the prognosis.

I started now Abraxane, a chemo agent very close to Taxol, about 6 weeks ago and I feel so much better, almost normal.

BTW, the decadron also helps a lot with nausea and brain tumors(mets) also cause nausea. I do think  your daughter will be able to work.

In terms of prognosis, I have now learned that you will not get an answer. If they tell you it's six months (which is what my radiation oncologist told me in Nov. 09) it's bad and traumatic, no matter if it's true or not. if they tell you it's nothing and you will live for  long time, it's also bad . (The radiation oncologist told me it was nothing that I had when I insisted it was in the beginning)  we then did a tumor marker test to decide who is right and I won. (I know it sounds like a joke) And then, a few weeks later she says I hace a few months?

I don't know how long I have, it feels differently every day. my oncologist(medical) and his nurse, also told me they don't know. My tumor markers are way down.

I hope you will find something useful among my words?(unedited)

I wish you the best that can be. Katrin

[cb3228]

First thank you for the kind words and I too wish you the best that can be and let it be filled with love and support from your family and friends.  We go today to the radiation oncologist, so I'm sure we will start to get some answers today as far as treatment.......WBR or the gamma knife type or surgery.  Then tomorrow with the regular oncologist and Wednesday with the breast surgeon regarding the lump they biopsied last week that was "abnormal".  I am going to look into the SS disability, but I do know that you have to be disabled for 6 months before your first payment and that the docs have to state that you will be disabled for at least one year.  It's all very overwhelming and as much as I want to get this information for her so she can do what's best for her and her daughter........I'm not sure how ready she will be to hear any of this.  Day by day I guess............That's what my husband always says and how he says he handled it when Sandi's bio mom/his first wife was stricken with breast cancer when she was 30 and then passed away at 35.  So he is living alot of deja vue moments and having a hard time too.  Positive thoughts today though for news that can be the best it can be........!!!

[katarina777]

Hi again,

  Bluebutterfly2222, a member here, sent me this link today and it should be great for you to have. (both of us) It's all about the journey of brain mets, and really well written. KATRIN

http://www.brainmetsbc.org/content/if-you-are-newly-diagnosed

[cb3228]

I just wanted to update everyone here.  When we went Monday to the radiation oncologist and got to look at the MRI report we saw that there were actually 4 measureable tumors (5x5x4cms, 3x3x4cms, 1.5x2cms and 1.5x1cm) as well as numerous non measureable ones.  My daughter pressed for answers and prognosis........the doctor told us that it was obviously not cureable, but was treatalbe.  He also said that the average survival is 8-12 months from diagnosis!  It's all been alot to absorb for her and she doesn't want to talk to anyone about it, so I've been playing the relay to give others that are concerned updates.  She also did find out that she can do FMLA for 6 months and have LONG term disability during this time and then after that Social Security disability will kick in.  The general oncologists office is helping with that paperwork.  

Can anyone tell me if this Doctor's prognosis sounds realistic?  She will also have scans of everything this week to ascertain whether it is anywhere else.  The doc seems to think it would be unusal for it to not be somewhere else too.   I am praying that it is not anywhere else and especially not the liver.  The fact that she was just diagnosed with BC in September (and had mamo's 2x a year because of her bio mom's BC at an early age, yet she tested negative for the BRCA gene!) had alot of scans done in March that were all negative and now suddenly all of this tells me that it is a very agressive cancer.  So now more waiting fo rthe results from these scans.............Thank you all for the kind words and info!!  

[bluebutterfly2222]

Thanks for updating us regarding your daughter.

I am glad you and your daughter were able to have a straight-forward discussion with the doctor, but sorry it was not better news... I don't believe anyone over the Internet could offer you better information regarding prognosis than her own doctor, who has examined her and has all the details of her case.  But keep in mind, any statistics provided by a doctor or found through research are only averages--NO ONE can actually know what the future holds for a specific individual.

It sounds as though your daughter is very fortunate to have you available to help her with all the medical, practical, and emotional aspects of  her otherwise very unfortunate situation.  Handling all of this, esp. since your husband is having such a difficult time, puts a lot of pressure on you "to be the strong one," so don't forget that we are here to offer you support, too.

Our thoughts and prayers will be with you all...

[SueYoung55]

Please check with your Doctor's office to get an appointment with a social worker. They can help her and you arrange for help from different cancer groups. Key point in all of this is they will only help while she is in active treatment. One may give her gas cards, another one may give financial aid. You may also be able to work out a financial deal with her doctors to dismiss any co-pays since she will have a financial need. You never know what is available until you try. Lots of paperwork but... help is help and she needs help and I know you would feel better too.

Prayers for you and your family.

[Ma111]

Thanks for the update. It is recomended that there is a family spokeperson. Sorry you are the one, that has to be very hard on you.
I'm not qualified to comment on the prognosis, however keep in mind it is not written in stone, eveyone is different.
Hang in there and I will pray for you and your family.