This is my first post. My mother was diagnosed with lung cancer (adenocarcinoma) that's metastasized to the spinocranial fluid, her spine, both lungs, some lymph nodes, the liver, and some other places. The doctor (oncologist) is putting her on an EFGR-targeted drug to handle the cancer. This diagnosis has all come out over the course of roughly two weeks. All of the legal paperwork was updated very quickly, and I discovered that I am the health care surrogate. As such, I'm tasked with being the person to speak with the oncologist (separately from my mother on an ongoing basis). I have prepared some questions for him based off reading some of the relevant medical studies, the prescribing information from the pharmaceutical company, some case studies, and some patient testimonials, but I really just don't know the sorts of questions people usually ask and find helpful. (And to an extent, this experience is new to me and very few of my friends have dealt with this (I am in my early 30s) so I am not fully aware of what information I or my siblings may find helpful.) I basically intend to confirm the efficacy of the EFGR-targeted drug, the details of the prognosis, the viability of alternative treatment options (that she's turned down out of quality of life concerns), and the decision-making process for getting hospice involved.
Also, my mother is in denial about her diagnosis. She has developed an unfounded belief in the efficacy of the EFGR-targeted drug because she is looking for a miracle. I think she isn't asking the tough questions to the oncologist (e.g., she apparently has not asked what stage the cancer is in).
Any tips on (1) the questions I should ask the oncologist, (2) whether and how to convey the resulting information to her, and (3) whether and how to convey the resulting information to family?
I apologize if I am asking something that has been answered before, if it's the same questions/concerns regardless of cancer type, if there's some key information I'm unknowingly omitting, or if my three questions are way too broad for meaningful answers. This has been a true whirlwind and I'm trying to handle this despite working and not being a health care professional. Thank you.
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Damien85
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hi weather she will survive this she has a lot of cancer in her. they have a lot of new meds and they are really good,weather or not she can make it thru chemo radiation, clinicles trying to find new meds. peoplewith cancer are living longer ask dr if she can make it thru it. i think you should set down she needs treatments,if you haven,t told the others.if she won,t believe you ,you need to get the others and take them to dr so he can explain. ask the dr anything and every thing you can thinkof. do know what stage shes at. if you all know shes eventully face reality. i hope this helps you. susiejo1948 5and a half years suvivor
You can't keep her from getting depressed just have family visit and maybe take her somewhere she really likés.all of your siblings and let her know how much you love her. Just be there for her. My family is what kept me going but I'm still here after five and a half years.susiejo1948
Hi! I am a stage 4 NSCLC adenocarcinoma survivor. I was diagnosed in 2013. Have had no evidence of cancer for two years. I used Alimta and carboplatin chemo for two months, then switched to targeted drugs for the next year.
I used Xalkori for 7 months until I experienced the rare side effect of prolonged QT wave in heart. I must say I can’t totally blame this drug alone as I was also taking two medicines for Sjogren’s Syndrome, an autoimmune disease that also had that same side effect. So with that triple whammy no wonder I had a problem. Stopped all three and then took the targeted drug, Zykadia for five months and oncologist monitored my heart to make sure I wasn’t having same problem.
Switched to chemo Alimta for another year and nothing since. Have regular scans and this month I am still in the clear. My cancer was in my left lung, outside the lung, chest wall and lymph node. A borderline Ovarian cancer was also found during initial testing.
What is your mom in denial about, that she has cancer or the possibility of dying? My oncologist told me 8 to 16 months and I told him I didn’t believe in statistics. I am an eternal optimist. I was aware of what having this stage cancer could mean but I chose to believe I would survive, concentrated on what I could do to make that happen, and maintained my faith (Romans 12:12).
Hope is important if you want to survive. Help your mom find things to enjoy and things to laugh about. My doctor believed a positive attitude can greatly help during treatment.
You continue to do the research and find the options, share what information she wants to know, but don’t overwhelm her with facts she is not ready to hear yet, but you will have the answers when she is ready for them. You will be there to support and advocate for her. Enjoy your time together and don’t let the cancer take away the fun and love you both enjoy in living.
If she is not ready to discuss Hospice yet, that is OK. I knew about Hospice through family members who used it, (it is a wonderful Program) but I didn’t talk about that as an option for me when first diagnosed. I needed to prove I was going to survive first. I know it is there if and when I eventually will need it but only after I have done everything possible to keep living.
Having a positive attitude will go a long way! My husband is like me. He had cancer and was given 5 years at the most back in 1993. He just celebrated his 72nd birthday. By the way, I am 71 years old.
I pray all goes well for your mom. Just make the time you have together as joyful as you can for as long as you can. You can do this!!
Her denial relates to the possibility of dying and the seriousness of her diagnosis. I think it's not real for her. We had a conversation that went like this:
Her: "I don't want you worried about me."
Me: "You know, I'm going to worry."
Her: "I mean, I would only want you to worry about me if something were to happen to me."
Me: "But something did happen to you."
Her: "This is a miracle drug that they're going to prescribe to me."
We haven't really told her that the drug holds the cancer at bay rather than curing it (absent a miracle). The doctor told her that the drug "treats" the cancer and she interpreted that to mean it's a cure. She seems to have a mental block to protect against negative information (as I witnessed when I gently tried to suggest that the drug was not a cure), but that is likely for the best. Oddly, she is very open to hospice and has given me general directives not to prolong her life at the cost of its quality. Perhaps the denial is to protect herself from realizing that she's closer to her current bar for throwing in the towel than she'd like. I don't know.
I'll ask the oncologist about the drugs you took. She is dead set against chemo and chemo is not favored for her cancer, but it can't hurt to ask. I mean, we're not ready to lose her.
By the way, your post gave me hope. It has not been a fun day, so thank you for that.
The drugs Xalkori and Zykadia are not chemo but targeted drugs. They are pills that you take at home.
They are very expensive but my hospital had someone to help me with the finances. I was able to get a grant to pay my copay for me. Use all the resources you can find. Most counties and hospitals have cancer organizations that help with resources and provide support groups. See if your county also does this.
The Alimta and carboplatin are chemo and were given at the hospital through IV. That would not be for her since she and her doctor vetoed chemo.
Does she know the stage? If you are stage 4 then technically there is no cure, but that does not mean you can’t have more years ahead. There is a percentage of survivors at this stage just as there is a percentage of those who succumb. I chose to be in the survivor percentage right at the beginning.
Where my cancer was now shows up as scar tissue on my CT scans. At the time I was diagnosed the survival rates were very low, but I decided I would survive. Like your mom I also wanted to believe in a miracle. My miracle is I am surviving. It didn’t have to be a cure. I lost a father-in-law and three cousins to lung cancer within months of their diagnoses , but the targeted drugs I took were not available for them.
I don’t see anything wrong with hoping for a miracle. I know someone who is a 20+ years survivor of stage 4 lung cancer. I would say that person could claim a miracle at this point.
Since I was treated, there are even newer targeted drugs and immunotherapy drugs that are now being used. The genetic testing that is done helps the doctor to decide on the best drugs for each individual.
Since the doctor suggested a drug for her, he has not given up on her survival. Her cancer is extensive and it will be quite a battle to get it in control. She will know when the time comes when she doesn’t want to continue treatment.
I firmly believe a cure for lung cancer will be found. We just have to hang on until that day happens and then we will definitely have our miracle. Until then, survival is the name of the game.
From what you said, I believe your mom does know how serious this is or she wouldn’t be open to talking about hospice. Right now it is important to her to believe she can have a miracle.
It is just my opinion, if she wants to believe there is a possibility for a miracle, what harm can that be? It keeps her positive while in treatment. She will know on future CT scans if the drugs are working or not. If they are not she will face her reality then. I wanted my family to believe with me that I was going to survive.
I sometimes believe the diagnosis is harder on the caregiver. You are living in fear of losing the one you love. I have been a caregiver for my husband and mother so I know the worry and fear. My mom had ovarian cancer and lived nine more years after her treatment. When she did pass away it was from a heart problem, not cancer. She lived to be 92.
While all this is going on you must take care of yourself and find something or some activity to reduce your stress. You want to be strong for your mom and need to keep yourself healthy.
Her telling you not to worry is natural. I felt that way for my husband and mom who took on the role of caregivers for me. They were fortunate since they were both cancer survivors and knew what kind of battle I had ahead of me. Even though I knew they worried they did their best to encourage me and even have a little hope themselves.
Check with your hospital about support groups for caregivers. Our Hospice also provides respite care. If you have to get away for a week and your mom is unable to stay by herself the cancer patient can stay there, get their medicines and be monitored while you are away.
I hope I have understood what is going on with your mom. The mind is powerful and definitely has control on how the body responds to whatever we are dealing with.
I am pulling for your mom. Surround her with love and understand her way of thinking. We all handle our stresses and trials differently. Just remember this is her way of handling it and if it works for her then how can it be wrong?
I am sorry this is so long. I can get carried away when I feel strongly about something.
You hang in there while your mom does her part to be a survivor. I pray that it does work out for her.
Leptomeningial Disease can be difficult to treat but not impossible. Your mother has the same condition that Valerie Harper has. When diagnosed, she was given a few months at best. That was March 2014. Harper is on a protocol of pulsed Tarceva (an EGFR Drug). She is active as a spokesperson for the American Lung Association.
On a more personal note, I’ve an acquaintance who blogs regularly about her spouse’s leptomeningial disease. After 2 years of treatment and overcoming various other challenges her leptomeningial disease did not show on her latest scan. She is not cured but she has good quality of life.
Find out if she will be put on Tarceva or Tagrisso. Find out if your mom has the T790 mutation. Ask if Tagrisso has been studied in lepto. If it has, advocate for the Tagrisso, it’s established that it works with longer Progression Free Survival in solid tumors, I don’t know if that translates to lepto though.
Ask how often your mom will be monitored to check the efficacy of her treatments. She should have regular CTs and MRIs. Find out what symptoms to watch for that mean her body is not tolerating the treatment. Free to Breathe may have a comprehensive list of questions you can use. Let me check and see if I can find it. I’ll post a link.
Because your mom’s cancer has spread to the meninges she is considered stage 4. You’re right, this is a disease you will be managing not curing.
Bring someone along to the appointments to make notes on what the doctor says. Most doctors do not mind if you voice record the appointment. Keep everything in a notebook so mom can read it in private since she doesn’t want to talk about it. As for the rest of the family there will be a variety of ways that they will respond. Everything from wanting all the details to wanting none and falling off the face of the earth.
Consider starting a private Facebook page, family and friends only and posting pictures and updates o. It. Or look into starting a Caring Bridge page and updating that regularly. If you are on FB, ask to join the private group EGFR Resistors, they are some of the most knowledgeable patients around. Some know more about EGFR than some doctors in regional hospitals.
If you got through all of this, know that I wish your mom well and hope she has the near miraculous response she hopes for.
Yep, she's getting Tagrisso (although it has to go through the insurance provider), and studies show that it's effective for leptomeningeal metastases (although less effective than it is for cancers that have not spread to that space). I will ask about how often the CT/MRI scans will be done, and I had the same concern. I am not a big facebook person, but I'll look into that EGFR Resistors group.
This list of questions comes from the ACS. You can print it out (10 pages) and write the doctors response in space provided. Not all questions listed are appropriate for the stage you are at now so read them over and pick the ones that you need.
Thanks, this is very useful. A lot of these questions are too much for my mom to ask because she'd rather deal with the next 7 days rather than the next 7 months.
Welcome Damien85. As you can see there are many knowledgeable and compassionate people in this community. The desire to stick ones head in the sand when hearing those dreaded words "you have cancer" is normal. You just want it to go away and leave you alone, but this is not realistic. You are in a very difficult place and this whole process may very well be harder on you than on your Mom. You are to be commended for researching and being willing to work with the medical team. The advice already given here is exceptional. I only wish to add that you need to take care of yourself.
Prayers and good thoughts for you and your family during this journey.
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