Stage IV breast cancer that spread to the brain

Hi Hander,

So sorry for your mom. I really am. The suddenness of this diagnosis must be very hard on you. I don't have direct experience of what your mom's going through, but I wanted someone to reply to you. My own mother has terminal breast cancer with mets to spine and pelvis. We just found out two weeks ago that that cancer of 13 years ago is back for good. It was a huge, huge shock. Although our mothers do not have exactly the same symptoms, I share in your shock. We had been repeatedly told all of this year that there was no cancer, just osteoporosis. So Dec 20th 2012 was probably the worst day of my life, and the shock was indescribable.

I have done a lot of thinking since then, nad a lot of research. Can your mom's illness have spread so fast, you ask? Hmm, well if your mom had the bad luck to have a really aggressive type, I believe that it's possible; however from my research I gather that it's probably more likely that the clean mammogram missed it. I've read a lot in the past two weeks about how imperfect mammograms are, something like only 80% accurate. The reason for this is that some women have very dense breast tissue, which makes it hard for a mammogram to spot the cancer. And yes, it can easily take 4 weeks for the treatment to start, with all the tests and the waiting for those tests that needs to be done.

Positive tips? Well, I've read that when someone has a terminal diagnosis, it can be stressful for them to hear talk of "fighting it" because, after all, the diagnosis is terminal and they can't help it or change it. No matter how hard they fight. So sometimes if theere's too much fighting talk, they can feel like they're letting their loved ones down since their disease is not curable. That's only what I read. Some people are all fighty, I'm sure. My own mother is gentle and quite down, and I know fighting talk would stress her out.

I've also read that when the initial shock has worn off, relatives with terminal illnesses still like to chat about everyday, light, fun things sometimes.

As for my own feelings, this diagnosis is forcing me to live in the present. Maybe Mom won't live to be very old, and maybe I'll only have her another 18 months, I have no idea at this point. Tests are still going on. But she's not dead today. She's here, and I can pick up the phone and hear her voice. It made me realise that all we have is the present. Then I realised that the present is all any of us have, anyway. I know of at least two people who died very suddenly with no warning. So although I was in utter shock, and have found it hard to do anything in the last two weeks, things could actually be worse. Each day, she is still here. And today is all that any of us have.

Soft and gentle hugs to you xxx

Hi, Handerhan43.

Sorry to hear about your mother's recent diagnosis.  The good news is that they have discovered the potential source of the numerous symptoms that she has been battling over the past several weeks.  In addition, within the next couple of days, the doctors should have the results in order to confirm their initial diagnosis or to determine if the original origin is somewhere other than the breast.  For certain forms of breast cancer, mammorgrams are not the most effective tool available for detection at any stage.  Triple Negative BC and Inflammatory BC are two that come to mind.  However, whether or not the mammorgram that your mom had was effective or not is now a moot point since they discovered the tumor in her brain, which has been successfully removed.

At this stage, it is very important that you and other family members help care for your mother and help her with the recovery process following the surgery.  Then, within the next several days when you get the biopsy results, you can talk with the medical oncology team to determine what treatment options are available, as well as what the prognosis is.  Once you and your mother have this important information, then, you can get into the timing as to how soon the treatments can actually begin.  Some of the delays may be due to the need to get approvals from the insurance company, as well as the time that your mother will need to recover from the recent brain surgery.  

Once you get the prognosis, be sure to get clarification as to:

a) the underlying disease (specific form of cancer);

b) treatment options;

c) timing for recovery from recent surgery as well as with the start of subsequent treatments;

d) when the next MRI brain scan will be done in order to confirm that the original tumor bed is clean following the surgery as well as looking for signs of any new lesions or tumors in the brain;

e) will there be a need to your mother to use the services of physical therapy as a result of the recent surgery to assist with her recovery process;

f) what meds, if any, will she need to minimize swelling in her brain following surgery including dexamethasone (steroids) to help reduce any possible swelling in her brain which can result in some of the symptoms similar to what your mother was experiencing prior to the surgery; and

g) once you know what the available treatment options are, you can get them to provide additional information to clarify the treatment objectives based upon the prognosis (i.e. surgery, chemo, radiation, etc.).

The above is a short list of areas that you and your family members can look into while your mother focuses most of her attention on her recovery.  How is she doing since the surgery?  Any symptoms?  How is she doing emotionally and physically?  

At this critical stage (when you discover cancer to be present at Stage IV), it may be helpful to seek the assistance of the oncology social worker who may be part of the medical oncology department or medical group.  Things can be overwhelming and speaking to an unrelated third party may help sort out the pertinent issues so that you all can determine the best approach to assisting your mother.  Until you are given dire news from the medical oncologist and, if necessary, get a 2nd opinion, try not to think about the 'what if' involving serious complications, etc.

Take one day at a time and look to help your mother with her recovery process.  Try not to focus on the "why" issues as they can certainly become very counterproductive.  It is important for all family members to try to get on the same page and remain as positive and hopeful as possible for your mother's sake.  She just endured a pretty serious surgery, so the less worries that she has the better.

Handerhan43, I have been a caregiver for a number of seriously-ill loved ones for over 20 years, including most recently for my spouse of 28 years.  There have been and continue to be some great advances made in the treatment of most forms of breast cancer.  Focus on getting the facts as to your mother's condition, first, before assumptions are made as to what lies ahead.

I wish your mother the best in her speedy recovery from the recent surgery, as well as with her subsequent treatments.  Take care in the meantime, Handerhan43, and be sure to get plenty of rest as well.  

Sincerely,

David

Stephanie,

Sorry for the recent diagnosis.  My wife has been battling brain mets since last march when she had a seizure.  She did GammaKnife,  Whole brain radiation when there were more metastases found at her followup, and in four weeks will be having a craniotomy to get the largest mass still elft in her brain.  It is a long road but just be as positive as possible while staying realistic as well.

As far as the doctors answering questions try and write questions down prior to appointments and take the list with you.. Go down the list until the questions are answered. 

Bryan