Log in or Register to participate in these discussions

prognosis for brain metases?

prognosis for brain metases?

Posted by Tamara50 on Jan 5, 2020 5:46 am

My mother in law has stage 4 melanoma (was stage 2 two years ago). She had surgery and started immunotherapy. It spread to her spleen and lymph nodes (1 year ago), they switched immunotherapies, and it seemed to be working, and the lesions started to shrink. She fell about a month ago, and they discovered two tumours in her brain. She had radio surgery a few days ago. She’s been told she cannot drive for at least a year. 

My mother in law is the sole caregiver of my brother in law (Down syndrome, non-verbal, requires significant care). There is no other family, and we live 1.5hrs away. I hate to be so ‘pragmatic’ during such an emotional time, but I’m a planner. If my mother-in-law needs care, or becomes unable to be a full-time caregiver, she and my brother in law will need to come live with us. My brother in law requires significant therapies/programs/etc, and I’m assuming that my mother-in-law would need to do a transfer of care to our local hospital. We also have two young children, one has autism, so our own schedules would need to be sorted. I’m happy to have everyone come stay with us, and love them both very much. But it won’t be an easy transition, one made worse by two special needs kids who thrive on consistency. 

At this point, it seems that my mother-in-law is in a bit of denial (understandable). And my husband is beside himself (understandable). Nobody is willing to ask/talk about prognosis. Everything I’ve read online is shockingly grim (apparently there’s a mean survival of 4 months). If this is true, then I want to act quickly, and start the transition. 

Does anyone have any insights, experience, advice, or just support that they could lend? I’m feeling quite overwhelmed and don’t really know where to start. 

 

Re: prognosis for brain metases?

Posted by ACH2015 on Jan 5, 2020 7:28 am

Tamara50‍ 

You are taking the lead, and I commend you for that. Who amongst you has been attending consults with your mother in law?, I am referring to the question about prognosis. Your mother in laws medical team are the best source of information toward prognosis, and if there are any further options toward treatment. There are so many variables involved, and understand that time frames aren't written in stone. May I suggest also asking about clinical trials if this has not been discussed or brought up previously.

Given the circumstances with the special needs for your brother in law's care coupled with your mother in laws situation, it is good that you have been able to look toward the future from a needs perspective. We as cancer patients go through many stages of thought process, and denial coupled with acceptance can be one of them. Brain cancer and treatments including radio surgery can certainly affect one's personality and thinking process.

When my father was diagnosed with brain cancer (Large B Cell Lymphoma) like you, I was the pragmatic one in the family that took on the planning part.  My father's cancer was incurable, and involved seeking hospice care, and helping my mother in many facets of her life moving forward.

You seem to have a very good grasp of the situation and the needs coming down the road. I'd like to offer some resources for you and your family:

Advanced Cancer is an excellent publication for both the person and the caregivers to help navigate through the situation.

Clinical Trials provides information toward understanding the process and preparing for the consults toward investigating if trials exist for your situation.

Coping When You Have Cancer offers strategies for the patient and family caregivers as well. I think it also offers perspective toward the patient specific issues in coping.

Taking Care of Yourself is something caregivers fail to see as a need. We can't be all we need to be to others without looking after ourselves.

I have been / am both a patient and caregiver in cancer. I am sharing these resources because I know how valuable I found them to be to me during my experiences with cancer. I hope they assist you and your family as well.

This is a process, and there are no right or wrong answers - just the ones that work best for you and your family in moving though the process.

You are a good person, looking toward doing your best, and what you think is the right way to help all concerned. I agree with your desire to move forward quickly. Timely planning and information gathering is essential, an makes transitions easier when they need to take place.

Keep in touch, and please take care of you as well.

ACH2015





 

Re: prognosis for brain metases?

Posted by Cynthia Mac on Jan 6, 2020 6:35 am

Tamara50‍ , welcome to this site. I also commend you for taking the lead - you already had a lot going on before any of this happened.

I take it that your husband would be classed as your mother-in-law’s primary caregiver, which puts you at a bit of a disadvantage with respect to “taking the reins” in dealing with the medical team and obtaining information from them. 

The fact that you’ve been told she cannot drive for a year indicates to me, in a roundabout way, that her prognosis may not be as brief as the statistics you have read.

You may already know this, but I think that if I were where you are right now, I‘d want to know what your MIL’s wishes are for the care of your BIL beyond the point when she is no longer able to care for him. 

Your husband’s family is most fortunate to have you in their corner. Please remember to carve out some time for your self-care a you go through this process.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: prognosis for brain metases?

Posted by Lacey_adminCCS on Jan 6, 2020 11:06 am

Tamara50‍ 

Welcome to our community. Thanks for taking the time to talk to us about your family's situation. Others have asked some great questions and provided some helpful suggestions. Her medical team is the only one who can really comment on her prognosis. Do you know if she has asked about her prognosis or wants to know?

For both the person with cancer and for loved ones, accepting the diagnosis and adjusting to life with advanced cancer takes time. Our Advanced Cancer booklet is a great resource to get people thinking about the future and can help start some important family conversations. If you would like to request a copy or two be mailed to you please call our Cancer Information Service at 1-888-939-3333. Some people prefer the hard copy in their hands rather than reading online. 

Before the cancer diagnosis was any planning talked about regarding your brother in law's care? How do you think she would react if you started this conversation with her and shared your thoughts?

We can support you through these tough conversations, 

Lacey

 

Re: prognosis for brain metases?

Posted by Tamara50 on Jan 6, 2020 1:21 pm

My goodness! Thank you all for your warm and sincere replies. I would reply to each of you individually... but I don’t know how!

My MIL has requested that we take care of her and my BIL should she become unable to care for both of them. When she passes away, my husband and I would take full guardianship of my BIL. We’ve had full conversations about this on many occasions. 

She has a tendency to avoid things even before the cancer diagnosis. In fact, I urged her to create a Will and POA’s a few years ago, before we ever knew about her cancer. As her cancer has progressed, she’s made it clear that she doesn’t want a prognosis, and neither does my husband. Not due to optimism, but rather from a place of severe anxiety and avoidance (understandable). My husband lost his father, and recently his other brother to cancer. To say that cancer has destroyed his family would be an understatement. I personally think that he and his mother are in shock that this is happening. 

I’ve since asked to be included in the next consult, and my husband will attend as well. My mother-in-law has been going alone in the past. I’m in a precarious position. On the one hand, I want my husband and MIL to have autonomy in their choices and the way that they chose to walk this path. On the other hand, I will be solely  responsible for coordinating this move, etc. I’m also watching my MIL struggle to care for my BIL, and it’s impacting his well-being. She’s recently stopped many of his therapies, and I’ve noticed that she is not showering him regularly among other things. But she wants to keep her independence and her life where she lives now.

I’m bowing a little under the ‘unknown’ of it all. And perhaps that is my baggage. I exclusively breast feed my baby, so no breaks there, and will be going back to work as the sole earner in a few months. I’m also administering therapies for my autistic son, as well as coordinating his care. He’s also very high needs, and needs constant supervision and engagement when he’s at home. I love my family dearly, but I wish we could have some plans in place BEFORE it becomes a chaotic emergency. 

Even as a I type this, I wonder if perhaps I’m looking for an answer that nobody could possible give. What does the future look like? When will events unfold, if they ever unfold at all? How can I stop this train? How can I make everyone comfortable in such an uncomfortable situation?

 

Re: prognosis for brain metases?

Posted by Lacey_adminCCS on Jan 6, 2020 1:41 pm

Tamara50‍ 

Sometimes it's not about others having the answers. The opportunity to discuss your thoughts, fears, worries, out loud is all you need 😊

We're listening, 
Lacey

Re: prognosis for brain metases?

Posted by Cynthia Mac on Jan 6, 2020 5:03 pm

Tamara50‍ , it sounds as though your husband will need you at his mom’s appointments because he’s a little to close to this emotionally. I’m caregiver for my Dad, and I’m OK at his appointments, but some kids can’t make that “disconnect” or take that step back.

Once you are a recognized part of the caregiving team, you should be able to access counselling services through your MIL’s cancer centre, and you might want to make sure her oncology team is aware of all the factors in her case, particularly when you mention that it has been difficult for her to provide the previous level of care for the son. At the very least, a counsellor might have some suggestions for you.

You’re certainly asking great questions, and seem to be planning really well. As for what the future holds, you might want to let some of that go for now, and focus on what the near future holds. Sometimes, if we try to plan it all out it can be overwhelming, but if you can plan out today, and maybe tomorrow, that can be enough.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: prognosis for brain metases?

Posted by Whitelilies on Jan 6, 2020 7:16 pm

Tamara50‍ Hello.....I am so sorry for all that you have to deal with at this difficult time.
I GET IT THOUGH.
I have 2 sons with Autism. (AND am fighting colo-rectal cancer)......life can be crappy!
I LIVE IT.
Your brother in law, with Downs Syndrome.....yes he needs routines kept,etc.
Your own child too. Transitions are difficult, at best of times, and planning.
If you live in Ontario.....apply for "Passport Funding" (no......not for a trip.....lol.....it is called Passport Funding) ....Ministry of Children Services, if age 18 and under.
There is a wait list....but funds will come......a bit is better than none.
On application write CAREGIVER CRISIS.
For your child, apply for the OAP (Ontario Autism Program -funds).....again wait list......
Soon....set up "Social Stories" for your brother in law, and your child.....about one day/soon/perhaps "Johnny" may live with your family, etc.
Explain how much you all love each other and want to help each other, and support is needed at this time.  Add pictures (PECS system).
"Talk" about this once a day, if possible.....so the "subject" is going to be comfortable, soon. 
Could brother in law sleep over for one night here and there? To "break the ice"?

I send you strength.....If I can help further, please tag me
Whitelilies

I have been / am, an Autism Advocate for almost 20 years.....have many contacts here in Ontario.

Regards