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Spine mets & brain mets - how much time is left?

BBLady
Posts: 2
Joined: Aug 2012

My sister was dx with Stage 4 colon cancer 3 years ago. She's done numerous rounds of chemo and last spring was given a "break" because she was doing so well. In June she started having trouble walking and they discovered a met to her spine. She had 21 rads and was scheduled for follow up PET scan next week. Last Friday, she collapsed at her house and was unable to speak clearly. They did a CT scan and found that she has a cyst on her brain that is also filled with tumors. She just called (we live on the other side of the country) and told us that they are sending her home tomorrow and are calling in hospice. We can't get any information from the docs even though they promised to call my other sister (who lives closer) before any type of decisions were made. If tumors are in a cyst, doesn't that mean they are encapsulated? She was told that once on hospice there's no more dr visits, er visits, etc. So we don't even know what the rads did, if anything. I don't understand how they have just written her off. Does anyone have any experience with anything like this? Good, or bad? We don't know what to expect, and don't know whether she has any time left. Would appreciate any advice anyone might have!

Patteee's picture
Patteee
Posts: 948
Joined: Jul 2009

Hi
I am so sorry about your sister. This is such a vicious, ugly beast! In the years I have been on this board, it is rare to see brain mets. Unfortunately those who have had the spread, that the remaining time is short and very little if anything can be done. That being said, I am not a doctor, nor the lord almighty :) and do not have the ability to know how much time your sister has left. The cancer has spread to her brain, they are sending her home on hospice. They are telling you through just this, that they have done everything they can do and now is the time for rest and peace. If she were my sister, I would be on a plane tomorrow. It just seems like now is the time.

Again, I am sorry. I am sure others will chime in here, we tend to be more active during the day.

Hugs from Minnesota,
Patty

herdizziness's picture
herdizziness
Posts: 3395
Joined: Apr 2010

I don't want to repeat what Pattee said but, I if it were my sister.i would be on that airplane to spend some quality time with her. I am so sorry for what this cancer has done to your sister. Our thoughts are with you.
Winter Marie

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

Like the others have already said I would try to go see your sister as soon as possible. I pray that there will be more that can be done and maybe while your out seeing your sister you can make an appointment to see her Dr and get some answers. Jeff

steved
Posts: 836
Joined: Apr 2004

We are hearing of more of this as people live longer with stage 4 disease and new treatments are eing developed. However,it is incredibly serious and disabling. It is vital in this journey to also know when to focus on aggressive treatment and when to accept that that is no longer the right approach. We all constantly balance the benefits of treatments against the potential side effects and downs sides and it sounds like in this situation the decision has been made that aggressive treatment is not appropriate and that focusing on care and quality of life in the time left is now the focus. It is an incredibly hard shift to make for the patient and for carers but also vital to accept when it is right.

No one can say how long is left- docs can estimate based on their experience but it is little more and than an educated guess. For you and her the focus now though is optimising quality in the remaining time and that should be what is foremost in your mind. There will be a lot of emotions of fear, anger, sadness and even guilt running around especially as carers who live so far away often feel excluded and in soem cases feel quite useless and impotent in these situations. Put all those feelings aside for now as they won't help your sisite. Think about how you can aid her comfort and quality of life and can make some good memories of this time for you and your family.

My thoughts are with you,
steve

Lovekitties's picture
Lovekitties
Posts: 2926
Joined: Jan 2010

I have to echo others, that now is the time to go see your sister. If you are thinking that if you go too early you will not be able to go again if she passes. Better to use your time and resources to be able to spend time with her now.

Unfortunately, treatment of brain mets whether with radiation or cyberknife does not seem to be able to contain the spread there. Even if encapsulated, it may be in a location which is not treatable.

Don't assume that "they have just written her off". There comes a time for all of us when the ability to help extend our life is beyond anyones control.

How much information the family or friends are able to get depends on how your sister filled out the HIPPA form. If she is deemed mental competent, her doctors would go with her wishes on how to proceed.

Yes, attempts at currative care does stop when entering hospice care. It does not however stop her from receiving care by physicians for pain or other issues.

Prayers for your sister and her loved ones as she deals with this stage of her fight.

Marie who loves kitties

BBLady
Posts: 2
Joined: Aug 2012

Thank you all so much for your responses. It was such a shock last night to get the news. I didn't get much sleep last night, but I think I'm processing better this morning. I think heading out now is the best thing to do, too.

Thanks again for your support, your thoughts and your prayers. Wishing you all the best also on your journey with this horrible beast.

BBLady

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

so sorry to hear about your sister.
who knows how long ?,
a few have beaten brain mets, but they are exceptional cases, i would prepare for her passing. like steve said, make the most of the time you have left.

hugs,
Pete

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

more hugs.

hugs,
Pete

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