NSCLC with mets to brain - 1257865

mainemusicmaker
Posts:4

My 45 year old sister was diagnosed with NSCLC (adenocarcinoma) back in March of 2012. She'd gone two years with a constant case of pneumonia before, just by chance, the hospital she used didn't have a bed available and they transfered her to another hospital and it was THERE that they diagnosed her cancer. Her initial diagnosis was stage 3b NSCLC and surgery was not an option. She went through chemotherapy and in November of 2012 the docs were thrilled to see the tumor gone. Just: gone....when she had her scan.

In March of 2013 she started to get headaches. Another scan found numerous thumbnail sized lesions on the front part of her brain. Gamma knife wasn't an option so she went the WBR route and, again, at her scan in June the docs were thrilled that most of the lesions were gone, with some scaring and one small spot left.

Now it's July and my sister had her follow up scan on her lungs and has received a terminal diagnosis and a 6mth to 1 year life expectancy. I'm devastated. But more confused than anything and here is why: with everything I've read, I was actually expecting the most recent diagnosis, however our mother, who has spoken to the doctor, is telling me that the doctor said, "my sister's "terminal cancer" is only "terminal" if she doesn't have a 2 hour dose of chemo every 3 weeks. With this type of chemo dosage, she could live 20 years. Without it, she'll die in 3mths to a year." My mother has hope, and that's good, however I'm a very literal person with a driving need to know what I can expect, so I can help my sister get what she needs done, done (if that makes any sense?). I don't want to extinguish hope for my family, and I won't, but according to everything I've read, NSCLC CAN be treated, but once terminal, it's eventuality is death. Am I wrong? (nothing would make me happier than to be wrong)...The docs won't speak with me about it and I feel like I'm very poorly educated on what's going on with her. Please, any insight?

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Reply # - July 12, 2013, 07:31 PM

Dr West
Posts: 4735

I'm sorry to hear about your sister's current situation. I'm afraid that the news related by your mother sounds very off. With metastatic NSCLC, it's incurable from the time it's metastatic, and the typical survival is in the range of many months to a year or so. Without any treatment, the survival tends to be just a few months. There are most definitely people who receive treatment and live many years with metastatic cancer, and several people following these boards are living proof of that, but they are unfortunately the exception rather than the rule.

In addition, having brain metastases tends to be associated with a shorter survival than other metastatic cancer. Again, there are exceptions to this rule as well, and I have a patient I just saw this week who is at her 5 year anniversary after being found to have widespread brain metastases back at the time of her diagnosis in mid-2008, but again, that's unusual.

Overall, then, I'd say that chemotherapy is known to improve survival on average, but the difference tends to be in the range of a few months, occasionally a few years, but not the differences you're hearing. Whether something got lost in translation or the oncologist conveyed misinformation, I can't say where the inaccuracy lies.

Good luck.

-Dr. West

Reply # - July 12, 2013, 07:41 PM

catdander
Posts:

I'm so very sorry to know your so young sister is going through this and know how it has and will change the world for her and those who love her. I'm afraid when the cancer moved to her brain with so many nodules the cancer had entered her bloodstream. Once that happens there is no treatment to cure the cancer. Dr. Weiss wrote the following intro for his discussion on first line therapy. I find it always helpful to read and hope you and others can benefit as well, He's starts, "Every cancer therapy has two purposes: to improve duration of life, and to improve quality of life. Every other measure of chemotherapy success, such as response rate or progression-free-survival, is a surrogate to these two true goals. I am using the broken record as my pseudo-apology for repeating this mantra repeatedly on GRACE, to my colleagues, and in my mind every time I make a treatment decision.

"Chemotherapy is the most important treatment for achieving these two goals in stage IV disease. Stage IV means that the cancer has spread and is no longer curable. Incurable is not the same as untreatable. Cure means eliminating every last cancer cell. Treatment means providing real benefit, in the form of achieving these two goals." http://cancergrace.org/lung/2010/04/16/introduction-to-first-line-thera…

This is an intro to lung cancer, http://cancergrace.org/lung/2010/04/05/an-introduction-to-lung-cancer/

More about staging and what it does and doesn't tell us, http://cancergrace.org/lung/2010/12/22/px-vs-rx-for-staging/

This discussion explain proven 2 line and beyond treatment options, http://cancergrace.org/lung/2010/10/04/lung-cancer-faq-2nd-line-nsclc-o…

A good starter explanation of how treatment options are dependent upon each individual's cancer biology, http://cancergrace.org/cancer-101/2012/03/17/the-principle-of-letting-t…

Give some of a read, they will help explain things.

continued...

Reply # - July 12, 2013, 07:49 PM

catdander
Posts:

I just want to add if your sister would like you to join her at doctor visits and/or give you permission to speak about her care the doctor and his/her team that's usually done by your sis having that noted in her patient records. Even if your sister says it's not necessary she may be quite receptive if you let her know it's also for your need and understanding.

All best,
Janine
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Reply # - July 13, 2013, 02:18 AM

mainemusicmaker
Posts: 4

Thank you, Dr. West & Janine. My sister has some of the best oncologists and is being seen over at the Yawkey Center at Mass General. I think the "lost in translation" is on my mother's part. I fear she's in shock and is hearing what she wants to hear, latching onto the "without the chemo - weeks, with the chemo - extending her life expectancy." I've done so much research, read so many medical papers, and visited hundreds of sites to try and get a handle on what we could expect BECAUSE I'm so far away and getting the medical information third hand. I wanted to be wrong, but with so many people telling me the same thing, I knew I wasn't.

Now to avoid the bullseye. Because this is going to devastate my mom....I'm not going to tell her, I'll let her keep her faith and pray (it won't hurt anyone and it'll make her feel better) and just be there for her when things start spiraling downward. She's going to look for an emotional vent and I'll be the only one left to be that vent. Good or bad.

Thank you both, very much.

Reply # - July 13, 2013, 07:32 AM

catdander
Posts:

That's a very reasonable plan. I more unsolicited word, hospice care at the right time is very important for the people with cancer as well as those caring for them. It may be a year or more or less but it's good to understand there's a balance when more treatment isn't helpful and at home help is best, I imagine at MB they will be on top of that but wanted to note it's an important piece of planning.

I hope your sister continues to respond well and live her life for years to come.

Janine

Reply # - July 13, 2013, 01:31 PM

double trouble
Posts: 573

I think that even though you are geographically far away and not directly involved in her care, that you would be welcomed with open arms into a cargiver's support group in your own area. You need people you can talk to who know what you're going through. I hope you will seek out such support and my thoughts will be with you.
Debra

Reply # - July 13, 2013, 02:42 PM

mainemusicmaker
Posts: 4

Thank you, Debra. I think, given what I know, I may move home for a bit. My sister adores her niece and nephew and I want her to be able to spend as much quality time with them as possible. More selfishly, *I* want to spend as much quality time with HER as possible as well. Knowing what the at-home care would be like for someone suffering from this, my mother won't be able to do this alone. Her and my step-dad are in their late 60s and they deserve a break from everything every once in awhile. I think being there will give them that break without the guilt that may come along with wanting a break.

This site has been so helpful for me. I've been reading for about a year now, but only recently signed on. It helped me through a lot emotionally and I think I have a good grasp on what's going on and what's to be expected, however I WILL look into a caregiver's support group once I'm back in Boston, for not only myself, but my mother as well.

Again, thank you all, your honesty and genuine care and concern are truly appreciated.

Reply # - July 22, 2013, 12:51 PM

mainemusicmaker
Posts: 4

Probably not the BEST news in the world....my sister went back into the hospital last Thursday after she noticed blood in her urine. Docs told us on Saturday that the cancer has spread into both kidneys and her liver. Not good...not good at all. =(

Reply # - July 22, 2013, 05:40 PM

cards7up
Posts: 636

If you can, I'd get back home as soon as you can. That news is definitely not good. It could mean her kidneys are shutting down and it doesn't take long at all when that starts happening. So sorry that you and your family have gotten this news on your sister. Keeping you all in my thoughts and prayers. Take care, Judy

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