Introducing myself

[Shella677]

 

I just had my first oncologist appt today to go over my final biopsy results and ct scan of my neck that was ordered from my ENT.  it was found I have cancerous nodes and  the cells likely stem from my lung as there is also a 1.6 cm lump on my right lung that can be seen from the neck scan. Next step for me is a PET scan and MRI of my brain. My biopsy is also  being sent away for ngs, which I am not familiar about.  I asked if he were to estimate stage  he said stage 3c or 4.

Being a 39 year old  mom, wife , daughter, sister, etc it is hitting hard as I know it has for all of you. The grief hits in waves and when it does it is debilitating.  I try to remind myself I don't have all the answers yet nor a treatment plan but it seems the news  I hear just keeps getting worse and worse.

At this point I will take any advice, success stories, or resources. In the meantime I will be browsing this forum. Thanks for having me!

[Judy M2]

As a young person, you are unfortunately not alone. We all understand your shock, grief and fear at your diagnosis. The "good" news is that the tissue is being sent for biomarker testing. Let's hope that you have a targetable mutation. I was diagnosed in October 2019 at age 66 with Stage IIIB and an EGFR mutation (exon 19 deletion). After chemo and radiation, I've been on Tagrisso, a targeted therapy, since March 2020, and I'm doing very well today. There are also many survivors here who don't have a mutation. Once you get your treatment plan, you'll have a better idea of what to expect. In the meantime, the wait can be unbearable, so don't hesitate to reach out here. 

[KM_NRP]

HI Shella,

I'm in the new stage like you, so I don't have much advice.  The one thing I can say is that I understand you grief waves.  I try to let myself cry sometimes, it's part of being normal.  Then other times, I try to keep busy and focus on good things in life.  It's ok to be normal.

[Tom Galli]

Shella,

A potential lung cancer diagnosis is frightening. But thankfully today, we have an extensive arsenal of treatments to arrest my disease. Your doctors are doing the right thing for sending your biopsy out for additional testing. This laboratory testing will uncover which of the modern treatment methods is best suited for your type of lung cancer. 

We've all been where you are now and rather than suggest a bunch of informational sources, I'll keep my initial comments brief. For hope, consider I was diagnosed 17 years ago and had a multitude of treatments and 5 recurrences but I am still here. So my first suggestion is if I can live, so can you.

This material may contain some tips and tricks to navigating your treatment.

Stay the course.

Toim

[LexieCat]

Hi, Shella, 

Welcome from me, too. I was originally Stage 1b (back in 2017) and had surgery. I was following up with regular scans at 6-month intervals when last summer we discovered the cancer had returned. The PET-CT showed one small bone metastasis in my spine. I've been on chemo/immunotherapy (no targetable mutations for me) and am doing very well. I'm currently on maintenance therapy of one chemo and one immunotherapy drug.

We have quite a few long-term survivors here. It's gotta be extra scary when you have young kiddos, but there's a good chance you'll be around for a long time to come.

Glad you found us--this is a great place for information and support. These folks have had my back since I was first diagnosed in 2017.

[LouT]

Shella,

Yes, at the first whisper of lung cancer it is easy to have all of your worst fears come to life all at once.  I've been there myself and so have all of my family on this site.  The only thing I know is that you need to take one step at a time.  The waiting for results can be excruciating, so you need to keep yourself busy and as optimistic as possible.  Then when you are finally presented with a plan to battle this disease a change does occur.  You will have more information and more knowledge and a plan to go after it.  So please stay as rooted as you can, try not to "catastrophize" the situation and ask as many questions as come to your mind (both here and with your doctor).  

Lou

[Jesse L.]

Yes, it is very hard to take it all in...prior to mid-December I was without a care planning what trips to take when this covid thing is over and now I'm planning how to survive chemo in the next three months. And that's after endless scans, doctors, surgery, and then more scans. 

For what it's worth, here's my take on it...you got two choices...you either quit or you fight. Quitting might sound easier but nowadays there's a lot of tools in the arsenal to fight this and once you educate yourself and work with your team of Dr.'s it will get easier. I promise... Together you will map out a game plan and then it's just a matter of sticking to the plan. And yes as many tell you in these pages, you can still live a viable life! 

Have hope, be patient, and relax as best you can. It will get better...

[Shella677]

In a selfish sort of way it’s nice to hear from people that are in the same boat as me.  All my adult life I have been scared to death of something happening to my children,  never did I think I would be the one causing them to go through something at such a young age. This is the hardest part for me so far.  They are unaware at this time so I may reach out when it’s time to tell them whenever that is for advice.

I will fight, and Waiting to see what it is I’m going to be fighting is the hardest part as mentioned.  Sorry for the rambles, I will update more once I have more info and I’m sure more questions will arise.

 Have a nice weekend!
 

 

[Lisa Haines]

Shella,

  My thoughts to out to you and I I know fear and upset of learning you may have cancer.  My cancer came on with very little warning (if you lock my icon you can read my story).  Thankfully, today almost six years after being diagnosed with Stage IV Lung Cancer that had spread to my brain I am now (NED) No evidence of disease and "living life" with a chronic health condition, as are many long term cancer survivors.

  I wish you the very best and hope ALL your tests go well and that you do NOT have cancer.  If you do, please know you've come to a wonderful group and LUNGevity and its members will be her to support you in any way we can.

  Best wishes,

     Lisa

[Sandy N]

Very sorry to hear about this.  I know that the testing period and the waiting is indeed the hard part.  I felt "better" (for lack of a more appropriate word) once that was over and a plan of action was formed.  Once I started treatment, I felt like I was doing something about it....AKA: FIGHTING!  Keep up the fight and don't give up....new treatments are being developed all the time and one day we might experience the word "CURE"!!!!!!!!

 

[Shella677]

Hi again, it’s been a little bit. My mri was clear, pet scan showed nothing more that what we already know. So lung and neck lymph nodes involved.  I have a follow up with my dr on Thursday to go over my bio marker results and treatment plan.  In the meantime my patient portal showed I had results.  It’s my bio marker! Not knowing exactly what I’m looking at but I see MSH, MLH, PD-L,PMS. Some positive some negative. I don’t see mention of the other mutations mentioned on this site. Did I not get tested for those or maybe the results haven’t came in?
  
        

[LexieCat]

Hi, Shella,

Different tests report their results differently, so it's hard to say what was tested for, based on what you're saying. The only result in that bunch that looks familiar to me is PD-L1, which relates to immunotherapy. Levels of PD-L1 over 50 percent can indicate certain immunotherapies might be especially effective, but any level can mean something like Keytruda may be effective. The clear MRI and the lack of any other signs of metastasis is good news. Your doc will be able to explain everything better on Thursday. Don't fret if you don't have any targetable mutations. I don't, and I've had a great response to chemo/immunotherapy. It's nice to have a targeted therapy available, but it isn't a make-or-break deal.

 

[Shella677]

As I was typing a reply my oncologist called.  He said that all my biomarker results have not came back. The company requested another block of my biopsy which they then sent.  He still wants to meet with me and wants me to meet the radiation team in case we go that route at some point.  So probably won’t have a treatment plan in place this week but soon he said.

Lexi- that’s great you’ve had good results without targets. I read your replies to other threads and I enjoy your insights and knowledge.

He said generally only 20% of women non smokers have the target mutations.
  
        

[LexieCat]

Interesting--one of my oncologists said that as an ex-smoker, I was LESS likely to have targetable mutations.

Glad to hear things are moving along.

 

 

 

[Jesse L.]

I am not a believer that whether a person ever smoked or not should make any difference as to whether any certain biomarkers will occur or be prevalent, etc. The effects of smoking are as varied as second hand smoke only, if a person only smoked a few cigarettes, smoked a few years, or 20 years, or whatever. That risk factor for many is all over the map and is far too varied to make even the most elemental remark about biomarker prevalence a waste of time in my opinion.

For that matter whereas I and many others quit smoking some time before contracting cancer, there have been a few medical professionals I've encountered so far who seem to relish pointing out smoking history to somehow what...blame the patient for what they're facing? At this point all that does is make me personally irate and does absolutely nothing to help anyone now.

I recently heard that fully two thirds of people now being confirmed of having some form of lung cancer never ever smoked. I wonder how the so called medical professionals are trying to explain that little fact...

 

[LexieCat]

Whether currently targetable mutations are more common in people who did or didn't smoke isn't a social statement, it's a topic of scientific study. So what is or is not more common among smokers is part of studying what causes cancer and what can stop it--the mechanics of it all. 

I don't think it can seriously be disputed that smoking contributes to the high rate of lung cancer. It more than likely contributed to mine--I smoked heavily for 40 years. I wish I hadn't, obviously, but nobody deserves this disease, and as noted, nobody can say for sure what caused a given person's cancer. The cancer sure doesn't care--it just IS.   

Here's an article that talks about why, though, smoking history can be relevant for treatment of lung cancer: https://acsjournals.onlinelibrary.wiley.com/doi/full/10.1002/cncr.29531. It's six years old, so not the most current, but still--it isn't irrelevant information for the study or treatment of lung cancer.  

[Shella677]

Well no EGFR or ALK for me. ROS didn’t come back completely positive or negative and they ran out of tissue to test again. Blood work is in the works at Foundation one and is due back tomorrow so hopefully it will be clear or we’ll need to decide if we do Another biopsy. I’m so angry and defeated. I just want to get started tackling this nasty cancer and more lymph nodes popping on my neck almost daily doesn’t help my mental state. I thought I had accepted the fact that I may need the typical vein chemo but after hearing that my odds are dwindling down it has hit hard. I know what ever gets the job done is the intimate goal but it’s still an accepting process, as I am probably still in part denial that I’m going through this at all.  Sorry to be a Debbie downer, it’s my hubby’s bday so I’m trying not to vent to him today.

[Jesse L.]

Well, after the complete battery of tests for any type mutations, Foundation One came back with a zilch for me. Now, if you take my advice you have to consider all angles. You may look at it differently, but here's  the way I see it...

Keep in mind that every therapy to include all current targeted therapies have side effects, some worse than others. Furthermore, reactions by person can differ and just because a targeted therapy works for you today does not mean it will work forever. In fact, those people on targeted therapies still need to be checked regularly...and often.

So let's look at what's left for treatments... Plenty, believe me! Sure you might get the vanilla treatment which does work initially but there are plenty of follow on treatments now in case more is needed. They're coming out with new therapies everyday... For example, immunotherapies are increasingly becoming a game changer and they have been shown to work to some degree for all. I'm in the same situation you are so I'm not just stating this all for nothing. We all have something to live for, so do what you need to do to stay in the fight. There's a number of folks in this forum who were given some pretty bad news and after years, they're still here!

Once you have a treatment plan in place, you'll feel better about everything. And that will happen...believe me. Have faith in your medical team as they've dealt with many situations such as yours...and if you're not completely satisfied, get a second opinion. 

And stay in touch...we may not be medical professionals, but uniquely we know how you feel. Everyone out here is pulling for you!!

 

[Shella677]

Thank you for your wise words Jesse. I had literally just gotten off the phone with my oncologist when I posted the above and I didn’t know where to turn to let my frustrations out. I’m glad this is a safe place!  I’m begging for a treatment plan but I know the drs need all the info in front of them. I do have a second opinion scheduled for Monday, I felt I needed to do that for my mental state as well.

I hope to become an active and helpful member of this forum, I will be back!

[Jesse L.]

Yes, at times it does seem agonizingly slow before an agreed treatment plan is decided upon and put into place. For us looking to have our fears answered as soon as possible  it can be so frustrating. In my case alone from suspected diagnosis through treatment planned so far will be six and a half months long...and then depending on further scans more treatment after that may be in order. Tough opponents require determination and commitment...it's just that simple.

You may see it differently and not to become just too philosophical, but in my opinion we only have so much control of our life. All the planning and hopes we have for the future can change through no fault of our own. However, our drive to realize our goals should never change. So, be strong as you go through the process... 

Believe that you can and will be helpful to others here...your experiences are every bit as important as ours. Keep in mind you just may be that bit of help that gets someone else through a really rough time... 

[LexieCat]

Hi, Shella,

Yeah, I was disappointed, too, not to have any targetable mutations. Tell me though, did you find out about PD-L1 level? 

Chemo and immunotherapy can be EXTREMELY effective. Not to worry, you'll be starting treatment soon. Have you talked to your doc about getting a port? I HIGHLY recommend it--your veins will thank you every time you go for an infusion or blood work or scans with contrast. 

Just wondering, what leads you to believe you have more lymph node involvement daily? If you're just going by feel, lymph nodes swell for many reasons. Is your oncologist concerned about it? 

Hang in there, the worst part of this is almost done. Most of us feel way better once we've embarked on a treatment plan.

[Shella677]

Hi Lexie, I do not know my exact level of PDL, my results said greater or equal to 50%. Dr said I have that going for me so treatment would be chemo and keytruda. He did say I would be getting a port.

My swollen lymph nodes lead me to this cancer journey, only symptom I have. When I had my PET scan some on my right side lit up as well that I could not feel, now they are noticeable to touch so I guess it’s just a reminder of the cancer and it makes me nervous of further spreading.

[LexieCat]

OK, well, the PD-L1 level is GREAT news in terms of immunotherapy. Any level above zero means it will likely help, but over 50 percent is much better. You should do very well on Keytruda.

Did the doc mention what chemo drugs he was considering? A lot of us (including me) had what we call the triplet of carboplatin, Alimta (pemetrexed) and Keytruda. It's fairly tolerable for most people.

Try as much as you can to relax. As things become clearer, your stress level will come down.

[Shella677]

He did not confirm with me the chemo drugs but I overheard him tell the nurse as she was typing notes and it was the triplet as you mentioned.  I didn’t bring it up to him at the time because I recognized the names from this forum lol.

[Jesse L.]

LexieCat got it quite right on the technical side, but I would recommend you do your best to please calm down. I know it's so incredibly hard to do, but believe me if your situation were dire, medical would have already started treatment. Your treatment team will not risk your life unnecessarily while they decide what is your best treatment plan. Easier stated than done I know but you just have to count on medical to do what is in your best interests...after all they do have experience in this sort of thing. 

Please don't jump to conclusions either...only those trained to diagnose can give you an accurate read about what is going on with your body. The rest is speculation, guessing, and worst of all Dr. Google. That just creates anxiety and fear and that doesn't do anyone any good, least of all you. And even with the variety of experience you get from this forum, you are unique and this disease and it's treatments affects everyone somewhat differently.

Keep the faith, stay in touch, and we'll support you as much as we can...