My Dad's stage 4 lung cancer.

[Lovemydad]

Hi - my Dad (70 year old) was diagnosed with stage 4 lung cancer. He was well and healthy on Thanksgiving, few weeks ago started to have pain in chest and caugh. Went to Dr and his left lung fully coverred in cancer with 1/3 water in the lung, small tumor on right lung, lymp nodes have cancer, rib broke from cancer. Absolute shoke. He is feeling ok at the moment, just cought and minor pain. More test are scheduled for next week (brain scan, bone scan, lung biopsy). Dr said no surgery, maybe very strong chemo. If my Dad have few month left, does it worth for him to suffer horrible chemo?

I need the truth. I need to know what is comming his way, because if I will not be preparred, I will not be able to be strong for him. Please tell me what is comming?

[LexieCat]

Hi, and welcome.

I'm a Stage IV cancer survivor/patient, and haven't had much problem at all with chemo. Surgery is never indicated for Stage IV, but there are a lot of very effective treatments--including chemo, radiation, targeted therapy, and immunotherapy. There are people on this site who have lived 15-20 years from their advanced cancer diagnosis.

So the point is, he won't necessarily suffer much, if at all, from his chemo. The exact treatment will depend on the results of those tests he's getting.  Lung cancer is serious--no doubt about it--but it isn't hopeless the way it once was. There are new treatments and for many people it can be managed like other chronic diseases. 

[Judy M2]

Hopefully your dad will get biomarker testing when the biopsy is done. If he does have a targetable mutation (like I do), he may not need chemo at all. Targeted therapy is very tolerable and most people have mild to no side effects. So, one step at a time. I know the shock of diagnosis well, but try to be patient while the doctors figure out the right treatment plan. Chemo (carboplatin and taxol) for me was OK, I did lose my hair--but it has since grown back--and my eyelashes periodically fall out a year later! They can manage any chemo side effects very well these days.  I am Stage IIIB and was 66 when diagnosed in October 2019. I underwent 30x radiation and 6x chemo. Doing well today on Tagrisso for EGFR mutation since March 2020. 

[GaryG]

Welcome to our group. I am 74 years old and was diagnosed with stage IIIB lung cancer On May 2020. I have been receiving a combination of chemo and Immunotherapy we call triplet. Lexi did a great job describing  her treatment and quality of life and that very much negates the common misconception about cancer treatment. I am also enjoying a quality time and seeing positive results while being treated. You come to the right place to seek guidance and ask questions. Of course you have a way to go before you receive the details about your dad's diagnostics and that will determine the type of treatment he will receive. Make sure the doctors do a biomarker test to check for mutation.

Nobody knows for sure (even the doctor) how many months your dad will live but as lung cancer patients,  we are a true testament  that beating the cancer is possible because many of us did it. All it takes is perseverance, hope and a good medical team.  I wish you the best.

 

[Deb W]

Welcome.   I think it's worth it to be treated.  There will be side effects, but we're all different in what we experience and how we tolerate them.  I think your father will let you know how he wants to move forward. I am a stage IV lung cancer patient and survivor.  I was diagnosed in 4/2020.  My last 3 scans have been clear.  I'm not going to say it was a walk in the park with side effects, but it was so worth it!  

All the best to you and your dad.

Deb

[Lovemydad]

Thank you, all wonderful survivors! Next week we have a lot of test: biopsy, brain scan, bone scan. I will update you when its all completed. I hope he has many months to live as he is already talking about medically assisted death and its breaks my heart and scares me to the core.

[LexieCat]

Well, that's an option that's nice to have, but hopefully one he won't need to consider for a very long time to come. Do keep us posted and best of luck to both of you!

[LUNGevityKristin]

I'm so sorry to hear about your dad's diagnosis.  I agree that once you have results from biomarker testing and the other tests you will have a clearer picture at treatment options.  I know it is hard, but try to have your dad take things one step at a time and try not to get too far ahead of himself.  Please le us know what we can do to support you, we are here for you.

[Steff]

Lovemydad-

I understand your concern.  My mom was initially diagnosed with Non Small Cell Lung Cancer (NSCLC), stage 3a over 5 years ago.  She was supposed to just have surgery, a bit of follow-up chemo and move on.  Surgery didn't go as expected, they found a much more involved tumor than expected and was unable to remove all of the cancer.  So my mom then moved onto radiation and chemo.  She did fine.  1.5 years after initial diagnoses, lung cancer was found again and she spent 6 months on chemo and an immunotherapy and then went on to immunotherapy only for about 1 year.  This time, she struggled with infections, so chemo was harder for her, but she recovered and got her life back.  According to my mom's oncologist, chemo for lung cancer isn't as harsh as other types of cancer.  Yes it can kick your butt, but it is survivable.  Docs are used to helping their patients manage side effects.  In fact, my mom continued to be my dad's caregiver during both of her lung cancer bouts. She knows a little about harsher chemos too, she just finished with one of the harshest - to treat the leukemia she was just diagnosed with in September.  She went through 3 bouts of intense chemo to completely wipe out her immune system and bone marrow.  It was tough, but she survived and is getting her life back again.  So, anything is doable.  

I know that you are probably looking for hope.  It's normal to feel hopeless when this is all so new.  One of the best things you can do is to educate yourself. A good place to start is LUNGevity's main website.  There is great information for both patients and caregivers.  The website walks you through initial diagnosis, then to treatment options, and then onto recovery.  It can give you some great questions to ask your dad's doc when he gets his official diagnosis and then when he gets a treatment plan.  The website became my best friend when I was helping my mom navigate her diagnoses and treatments.  I want you to know that there is hope.  We've all been in you and your dad's shoes and we all have come out the other side.  Some of us are more scarred than others and some of us are still fighting.  But we are all LIVING!!

I know you want to know what is coming next, but it is hard to say until he gets his diagnosis and treatment plan.  Testing for lung cancer often includes a pretty simple biopsy, blood tests, and various scans.  None of these are really major.  He will likely be given anesthesia for the biopsy, but it is typically just a day surgery.  All of the other tests aren't as invasive.  Once those results are back, he will be given them and will then discuss treatment options.  Some people ask how long they have to live, but the reality is no one really knows.  The fact that others have survived this disease means your dad can too.  Advanced treatment options enable patients with late stage diagnoses live their lives for many years.  Just take one day at a time and one step at a time.  That is all we can do.

Hope some of this helps...take care,

Steff

[Lovemydad]

Thank you Steff and I am sorry to hear about your mom....

[Suzanna]

Very sorry to hear about your father, but as others have stated, you are in the right place. My husband used to always say that he would never put himself through chemo, until he was faced with his own stage IV diagnosis in September. He had 8 tumors that were spread from his spine to his hip. He went on the "triplet" and had minimal side effects. In fact, I think radiation might have been the hardest thing for him as it absolutely knocked him out. He never lost his hair, never really lost his appetite, no skin issues... just fatigue and an occasional fever. He received the best possible diagnosis in January with no evidence of disease and will continue to have scans every 2 months and stay on immunotherapy for 2 years. It's an individual choice, but you'll see as you spend time on these forums, many people are managing the diagnosis and treatment. You won't find a better support group and a place to get real information rather than the terror you might find on Google. Best of luck to you on this journey. 

[Lovemydad]

Hi everyone - so my dad diagnosed with stage 4 NSCLL. Positive - CK7 and TT7. Negative - SOX10, CK20 and ALK. Pending- EGFR, PD-L1.

He had 5 radiations and we are waiting to see Dr and hopefully to start chemo. He has metastasis to brain and lymph node. His rib has broken and his spine bone T12 is basically almost gone, which is huge concern for spinal collapse and Dr said there is nothing they can do for his spine. He also has tumor on his hip and leg bone.

When he was on strong steroids, he felt good. His pain is under control with 6 mg hydromorphone morning and evening. Now that he is getting off steroids, he is very weak, coughing again and short of breath.

Dr will not give us any prognosis, which is frustrating not to know if he will be here for few months or few weeks. I understand that EGFR positive will be the good news, correct? 

Any comments about his diagnosis are welcome. The amount of metastasis is very concerning for me......

 

[LexieCat]

I'm sorry to hear your dad has so much going on with the cancer. I'm honestly don't think any of us--or his doctor--could reasonably guess at how much time he has. The bone mets, I imagine, would be pretty hard to turn around at this point. I think the bigger concern at this point might be making sure he's not in pain. 

Do you have a palliative care specialist involved yet? Those medical professionals are the experts in relieving the pain and other unpleasant effects of treatment, as well as the cancer. It's not the same as hospice--you can get palliative care even while getting treatment. Maybe they can suggest something to help him breathe easier and to relieve the coughing.

Sending a hug...

[Lovemydad]

Hi Lexie - my Dad refuse to meet palliative care, I think he is sacred that will mean the end. He is very optimistic, and I am grateful for that, but at the times he is almost in denial how serious his situation is. I also do not understand why he had so little radiation. Only 5 rounds.

[LexieCat]

Well, you can tell him that my cancer is almost entirely gone, and I meet regularly with the palliative care team. The thing is, cancer and cancer treatment can cause a bunch of unpleasant effects--pain, nausea, constipation, etc. Palliative care is NOT just for when you stop treatment or are near the end. It's to relieve any kind of unpleasant symptoms that accompany cancer and cancer treatment at ANY stage. They  can help you feel better at any point in the process. 

Hospice is entirely different. With hospice, you are no longer receiving treatment for the cancer, though you can receive palliative care to make you feel better. Hospice is what you can go with when you are "near the end." Palliative care is with OR without treatment--they hooked me up with palliative care last year, when I was first diagnosed.

[Tom Galli]

Lovemydad,

EGFR is good news if it points to a targeted treatment that might inhibit future metastatic spread and growth of existing tumors. But, your dad already has widely spread extensive disease, and that is of significant concern. The symptoms he demonstrates ending the course of steroid are additionally concerning.

I understand your dad's doctor's reluctance to offer a prognosis. If I had your dad's presentation, I'd be pushing for pain and symptom relief so I could enjoy my remaining time with friends and family. 

Stay the course.

Tom

 

[Lovemydad]

Hi Tom – can you please help me understand the situation with steroids? Dr said that once Dad stops steroids, cancer will be affecting him way more. Why not keep him on steroids than?

You mentioned it is concerning that he feels so much worse without steroids, but is it because cancer is everywhere and if patient do not have lots of mets, coming off steroids will not be as awful?

I also think at this point chemo might not do much but make him more weak and sick, but he thinks chemo can extend his life for years (which breaks my heart because I don’t think it is the case)…..

[Lovemydad]

The other super upsetting point….it has been 1.5 month since his initial diagnosis and the only treatment he had is 5 radiations to spine and brain…..why is it not a urgent matter? Or does that mean Dr already know nothing will work? Is it really too late for my dad?

[Tom Galli]

Lovemydad,

Lots of complexity in answering your questions. First I'm not a doctor, and the Canadian medical system is different from the US.  I don't know if the doctor's personal belief is affecting further treatment and urgency, or the Canadian medical system's restrictions on practice. 

I've had steroids many times during my extensive cancer treatments. Why? They tamp down the body's inflammation reaction. When I had stents placed in my trachea to bolster a surgical fistula repair, the lining of my trachea became inflamed causing near constant coughing. Steroids quickly moderated coughing but doctors couldn't keep me on steroids for very long. I'm recalling I had a 7 day dose and on finishing the dose, the coughing returned. Steroids can increase the chance of infection and weaken bones. Therefore, I assume your dad's steroid treatment was done to reduce inflammation. Inflammation in the lungs can cause coughing, and bone metastatic inflammation can cause intense pain.

I wouldn't know if it is too late for your dad. I'd ask his doctor for a forthright projection. From reading your posts and your descriptions of the extent of cancer, they point toward extensive disease in the lungs, including metastasis in the brain, and with very significant bone metastasis. My general knowledge of cancer suggests it is beyond curative treatment. I know this is so very hard for you. I wish I had a magic wand that could restore you dad to good health. If I were in your dad's situation, I'd seek a hospice admission.

Stay the course.

Tom

[Lovemydad]

Thank you Tom.

[Lovemydad]

~ Update ~

My dad tested positive for CK7, TTF-1 and negative for SOX10, CK20, PSA, ALK. PD-L1 score less than 1%. EGFR positive with Exon 19 deletion mutation. Had 20GY radiation to his brain, spine, rids and hip. Developed mets on liver, in all spine, in the knee and in spinal fluid. Started Tagrisso on April 15th.

Dad moved in with me full time so I am primary caregiver. We are working with palliative care team and for now he is ok. Very weak, sleeps a lot but still have appetite, just eats much less.

Fluid in his lungs increased again so he will probably will need to drain it again. Last time 500 ml was drained from his lungs. He lost 4 lb last week, which is too much and I am worried that cancer taking over him. All his scans will be done again in July.

What I do not understand is his oncologist said Dad can have 2-3 years to live if Tagrisso works. Palliative care Dr on another hand, sent Dad's file to hospice already. I am so very confused and don't understand how oncologist is so optimistic. Is it really possible Dad can be around for years with cancer all over his body???????

 

[LexieCat]

The oncologist is the expert on cancer, not palliative care. And hospice is appropriate ONLY if he is receiving no treatment for the cancer. 

The truth is that the best oncologist in the world can't say exactly how long he has. Everyone responds differently to treatment. I know targeted therapy, like Tagrisso, can work wonders. 

Chances are you'll have a much better idea of how it's working when he has his next scan.

Sending a hug!

[LUNGevityKristin]

Hang in there.  

Here is a little more information on targeted therapies to see how they work: https://lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/targeted-therapy

I also wanted to share the caregiver resource center with you: https://lungevity.org/for-patients-caregivers/caregiver-resource-center/resources-for-caregivers

Being a caregiver is difficult.  Please reach out to get support when you need it.  We also have virtual meetups that caregivers are invited to attend on Mondays.  Here is more information about that: https://lungevity.org/for-patients-caregivers/support-services/virtual-meetups-for-lung-cancer-patients-survivors-and

[Jesse L.]

Believe me when I state that LexieCat has it spot on... I've read of many who respond very well to targeted therapies and a few others not so much. For as much experience that the oncoligist has, even he can't for sure predict how long a person has. Everyone reacts differently, even with the exact same treatment. That's what makes cancer such a frustrating devil to deal with; there is no absolute "if this, then this will happen". All we can do, patient or caregiver, is hope for the best that can happen. 

I imagine that may sound kind of weak, but in fact if anything it is the opposite. If you are able to handle whatever may happen in the future then you are satisfied with life. None of us come with guarantees so enjoy every minute; they are precious. 

[Tom Galli]

I wish I could advise you about your dad's doctors differing opinion and approach. In the US medical system, a patient enrolls in hospice and that enrollment is sanctioned by a physician who certifies that further treatment is not possible. Moreover, enrollment in hospice care generally means that curative medicines (Tagrisso) are not given. Hospice administers medication to relive pain and discomfort.

However, the Canadian health system may have a different approach. My view aligns with your dad's oncologist. EGFR with Exon 19 deletion can be successfully treated with Tagrisso and thus far, your dad has been on that medication for less than a month (you report a start date of April 15th). 

I do hope the doctors confer and align on a path forward.

Stay the course.

Tom