Still processing PET scan and biopsy

[Lizzy]

Hello there, my name is Lizzy, 56, wife, mother and grandmother. Like everyone, I never expected to be looking at joining the club. 8 weeks ago my left shoulder blade started hurting, (akin to a pulled muscle feeling), 3 weeks ago went to my doctor as it was getting more painful. Since then xray, CT scan, PET scan and biopsy. PET scan lit up left lung mass, right aredenal gland, lymph nodes in chest, lymph node in neck, and soft tissue surrounding pancreas, liver, and upper abdomen. Got biospy result Friday night on the largest mass (5.5cmx5.4cmx4.1cm) - the lung. Adenocarcinoma.

No other symptoms except for shoulder blade pain. Hoping for call from Oncology tomorrow for an initial appointment date to discuss what it all means and what the options are. I think I'm still in a twilight zone of knowing more than I want to already, and yet it has felt like the longest two days waiting for Monday.  

Thanks for listening.

Lizzy

[Robert A.]

Sorry you had to find your way here but welcome. There are a great bunch of people here and they have great advice. After you find out more I'm sure there is someone here that can answer your questions. 

[LouT]

Lizzy,

Welcome to our forum.  We're sorry you need to be here but glad you found us.  Let's start at the top; you'll find a lot of survivors here who were diagnosed at different stages in their Lung Cancer (LC) journey and we've learned that LC is not the death sentence it was years ago.  Many here treat it as any chronic disease and are doing well.  I also would like you to take a few minutes to read a short blog titled, "10 Steps to Surviving Lung Cancer; by a Survivor", it can be found here.  We hope that you'll stick around and keep us updated on your progress and please feel free to ask any questions you may have here.  There is a great breadth of experience in our group and folks are always willing to help you.

So, stay strong and know that you're not alone.  

Lou

[Tom Galli]

Lizzy,

I'll add my welcome to Robert and Lou.

I do hope your biopsy sample is being sent to a laboratory for bio marker testing. (I linked an informative article describing this very important testing). Certain types of adenocarcinoma display driver mutations that can be exploited by targeted therapy. If your tumor has the indicated bio markers, you could experience remarkable results from these new treatments. Moreover, this testing also discloses the likely suitability of immunotherapy treatment as a treatment method. Again, this new regime has remarkable results.

From your description, your cancer will likely stage at IV. I had a stage IV progression during treatment. I'm alive nearly 18 years after diagnosis. I offer this information because if I can live, so can you.

Stay the course.

Tom

[Rower Michelle]

Hi Lizzie,

We’ve all been there.  Although it might sound odd, you’re one of the fortunate people who had a physician that made an accurate diagnosis.  Many of my friends were in physical therapy for months (and in some cases over a year) before their lung cancer was finally diagnosed.  
 

There are many different types of adenocarcinomas- treatment is tailored to what Tom pointed out- the biomarker.   It’s not unusual for women under 60 to have one. 
 

It’s important to remember that diagnosis is not prognosis, I received a stage IV diagnosis three years ago and I’m in remission (no evidence of disease).  
 

In the beginning we all feel like the Twilight Zone, brighter days are coming so hold onto your hope. 
Michelle

[Judy M2]

Hi, Lizzy and sorry you're one of us now. But your doctors saved you months of delay by being so diligent about your testing. Many of us (myself included) are misdiagnosed for months because we don't fit the at-risk criteria. 

As the others have said, biomarker testing is essential to getting your personalized treatment plan. It will take more time to process but the results are worth it. 

I was diagnosed at Stage IIIB two years ago with an EGFR mutation. I am also NED (in remission) and doing well on targeted therapy. It took some doing to get here but I'm grateful for my status. 

Let us know what your testing shows. There's lots to learn about this disease but keep in mind that Dr. Google isn't your friend. 

[Lizzy]

Hello Everyone,

Thank you all so much for your kind words, practical advice, and shared experience. It means so much. Especially for helping me to formulate a list of points to ask the oncologist about, I am definitely not planning on playing Dr. Google.

Update - yesterday I received a call with 1st appointment date with the oncologist, it's this Friday! And I've also been scheduled for a brain MRI next week. Feeling so fortunate to have this medical team around me.

Thanks again All,

Lizzy

[Lizzy]

Hello Again Everyone, 

What a busy day! Had a very informative and supportive meeting this morning with my Oncologist, my freight train continues to roll...

Diagnosis Stage IVb (T3 N2 M1c) 

Next up, 

Tues 11/23 biospy adrenal gland,

Weds 11/24 - port being put in chest (Thursday 11/25 day off for turkey day)

Fri 11/26 - Brain MRI

Current chemo infusion plan to start w/c 11/29 is Carbo (AUC 5) +Pemetrexed (500mg/m2)+Pembro (200mg) unless Brain MRI shows positive, then drug plan will change.

Also starting palliative care w/c 11/29

Feeling much more empowered tonight. Knowledge IS king. I truly appreciate my Doctor's openness today with everything. Kind and caring, and NO sugar coating. 

Again, thanks everyone, your support has been truly invaluable to me this week. Take care all.

Will update again after brain MRI result known.

[Rower Michelle]

Hi Lizzie,

Freight train is a good way to put it and at the same type it’s so important to have a complete diagnostic picture before the treatment plan gets rolling.  
 

My oncologist moved very quickly too because my condition was deteriorating rapidly. The triplet was first followed by the port.   That was three years ago and now, it can be done a little differently.  There’s a couple of questions I would recommend asking since the biomarker testing isn’t back yet (?). 
 

Ask about the reason for including Keytruda in the chemo combo.   If you have a biomarker, your targeted therapy could be delayed to allow for the immunotherapy to wash out of your body.   Keytruda and targeted therapy often don’t mix.   Some people are getting the Carbo and Pemedtrexed alone for the first infusion. 
 

Also if you do have a biomarker, then a port may not be necessary either.  

Here’s a short version of what happened to me which admittedly is uncommon: 

I got the B12 shot and one week later the triplet.  The following day after my first infusion I received the port.   The port install was a Friday morning.  Unfortunately I had a complication.   It was messy.  

After the triplet my symptoms worsened. The cough increased, then I broke a rib.  

Just before the second scheduled infusion, my biomarker came back as ALK Positive.  Had we known that sooner we would have held the Keytruda as it’s not effective with ALK and all it did was worsen my symptoms.   Fortunately it had been three weeks since the infusion so it was safe to start targeted therapy.  

Then the port came out, it was never able to be used.  It took a little over a month to heal.   Again, this is atypical but if we had to do it over I would have skipped the Keytruda and the port until the biomarker testing was confirmed.   

So the two questions I would ask your oncologist is:

In the absence of the biomarker results:

1. What is the purpose of Keytruda?

2. Is the port necessary before the first infusion or can it wait until the biomarker comes back?  

The other issue to consider is if your doctor is not at a National Cancer Institute (ie Johns Hopkins in your neck of the woods) then you may also want to consider a second opinion.  Lung cancer has become highly specialized having an expert opinion is very important.  I was diagnosed at a very reputable hospital system in the KC Metro.  The proposed treatment plan was the triplet, but we got a second opinion with additional biomarker testing (called NGS- next generation sequencing).  The NGS identified the ALK mutation where the “standard biomarker” testing did not.  
 

These early days are dizzying, knowing what questions to ask and the process helps to get a little settled.  
 

Good luck next week and let us know how you’re doing. 
 

Michelle

[Lizzy]

Hello again Everyone, quick update. They weren't able to biopsy the right adrenal gland mass on Tuesday due to it being too close to the diaphram and wrapping around a nerve bank, but they were able to get to the mass in my upper abdomen so those samples have gone off to be tested. On Wednesday, they implanted my medi-port and the post xray confirmed it was well positioned, So that's all good news.

The xray did show that the lung mass has grown from 5.1cm to 6.2cm since the PET scan on Nov 9th which accounts for the ever increasing intensity of the pain behind my shoulder blade where the mass is pressing into my third rib. Am having a palliative blast of radiation of Tuesday to see if that can relieve some of the pressure and am seeing the palliative care Doctor on Wednesday as the Dilaudin doesn't seem to be helping much. Am excited for my appointment on the morning of Dec 2 with my oncologist who said by then my biomarkers shoud be back from the lung biopsy, and together with the results from this week's abdomen biopsy and today's scheduled brain MRI should give them a much clearer plan path. First Chemo date is still scheduled for the afternoon of Dec 2 as well but the exact cocktail won't finally be decided until after seeing the Oncologist that morning. So, medically I am really comforted by the professional care I am getting. Our hospital is part of the Walter Reed system, everyone is wonderful and the coordination and communication between everyone, and to me, amazes me.

Mentally I'm feeling like Dr. Jekyll and Mr. Hyde at the moment. In relation to the cancer itself my mind is in a good place whatever the next steps are, but am having little pity party moments over things non cancer related, mostly frustration with it being the center of attention when people outside of the medical community talk to me, as it seems to be their only topic of conversation. I am more than just cancer, and in my party for one moments I just wish they could forget about it once in a while, and instead of asking me about it all the time, remember I am still the person I was before the diagnosis last week. Still that lunatic who went back to school last year at 55 to with a fanciful idea of getting a History degree, and am now in my second year with essays to write with upcoming deadlines. The French and German Revolution doesn't care about cancer, and I like that. 😄 But I have to remember they too are processing and hurting. Does anyone have any links to what I as the patient can do to emotionally support my family and friends as they cope with all this?

Thanks so much!

Lizzy

[LouT]

Lizzy,

I don't know anybody here who hasn't gone through the sea of emotions that you describe.  Please give yourself some grace.  Others don't know what to do, they can become uncomfortable and either respond by overtalking or not talking at all.  So, give them some grace as well.  And there are enough survivors here for me to tell you that your life is NOT OVER!!!   And I think you are super for going back to get a degree.  I've often thought of taking a course or two, but I'm too set in my ways to change my life for a "study life" and focused on music.  So, instead of college I'm learning to play the piano.  At 71 I doubt I'll become a virtuoso but I'm having fun and learning to play pretty quickly.  So you keep all your dreams in hand...you're not near done writing your story yet.

Lou

[Lizzy]

@Lou, thanks so much for the perspective nudge, That's exactly what I needed. I hope the attachment to this message is OK to post, but it made me smile thinking about your piano learning whilst I'm wrapping up the Beethovan section of the French Revolution. 🙂

[LouT]

LOL!  Perfect Lizzy.  Thanks.

Lou

[Tom Galli]

Lizzy,

Walter Reed—The Army Medical Center? In my active duty tenure, I spent more time than I care to remember at WRAMC. Since then, I think they closed the Army hospital in DC and rebadged the Navy hospital in Bethesda as Walter Reed. 

Either way, you are in good hands  

Stay the course.

Tom

 

[Judy M2]

Lizzy, I started chemo and radiation 2 years ago on Dec. 3. The mass in my lower left lung was also 6 cm. Today, 2 years later, I'm grateful to be NED. So I understand everything you're going through! 

It might help you to create a Caring Bridge site so you can give the people you invite updates whenever you want. This way you don't have to tell your story over and over, and it may give people permission to talk about non-cancer subjects when they see you. It takes a little time to set up (gathering email addresses) but afterwards it's simple to update and maintain. 

In time, I hope your condition becomes one that people can see past your cancer. Today only people who I don't see regularly ask how I'm doing, and that's more a function of politeness. They and I have moved on to my pre-diagnosis life. 

Best of luck with treatments and I'm looking forward to the results of your biomarker testing. 

[Lizzy]

Hi again and THANKS again to everyone. Update.. the chemo and the targeted lung mass radiation is temporarily 'on hold'. Got word yesterday that Friday's brain MRI showed two active masses, (left frontal lobe 2.2cm with edema and left temporal lobe 3.1cm with edema and hemmoraghing), so now neuro surgery is jumping in to deal with the brain issues first, and then I'll be back to the first plan (no biggie to wait for a week or two,biomarkers aren't in yet) First meeting/consultation with Neurosurgeon is TOMORROW.  Feeling so looked after by all right now 

[Judy M2]

It's reassuring when you can get quick attention. Fingers crossed. 

[Tom Galli]

Lizzy,

Stay the course!

Tom

[Karen_L]

You've been hit by a lot, all at once. I can hear how shocking it's been for you. Even though I am almost through with all my treatment and after-effects,  I am only now beginning to process the whole thing. It is surprising how deep my feelings run about it all. All along, I've needed to take time to remember to breathe deeply (before falling into an inadvertent nap) and that is standing me in good stead at this point. I've also started meditating.

I hope the neurosurgeon had good things to say. 

Best,

Karen

[Lizzy]

Hello Again, quick update from me and my neurosurgeon visit on Wednesday. He ordered additional images as he thought there was more to story than was being seen on taken images. He was correct. New CT showed the two MRI identified spots and 5 more. None were candidates for surgical removal due to either their locations, sizes or individual behavior problems, edema, hemmoraghing, etc. He felt whole brain radiation would be too risky to healthy parts, so proposed fractional gamma knife radiation to all 7 sites over 6 to 8 sessions. On Thursday he iradicated 3 small ones in one gamma knife session, and worked on the biggest hemmoraghing one. He said no more until next Wednesday to have rest up and watch the edema etc. But he and oncology agreed chemo is to start Monday (minus Keytruda for now - not sure why, oncologist will be going through that with me on Monday) before Chemo infusion because it was all a bit too much to take in yesterday after the gamma session and being so tired). Also getting tatted and marked up for radiation to the original mass from four weeks ago in the lung on Monday. That treatment will also run concurrent to chemo and gamma. Feeling very tired today but good in spirits. Best medicine so far... my son calling from England at 4am this morning to say he, his wife and my granddaughter are arriving here on Sunday while current travel/testing rules are stilll in effect between UK and USA until Monday. So, for me Christmas is coming early in my home this year through all of the wonderful medical people I am meeting, the efforts of everyone, and my family being here in about 48 hours from now.

 

[LouT]

Lizzy,

Glad to hear that you are now on "the treatment trail" as it's the only way to get this thing under control.  Others here have had the"gamma knife" therapy and will give you better insight than I can on results, side-effects, etc.  But for my part, my fingers and toes are crossed for a good outcome from the chemotherapy.  BTW, I'm just starting to learn Fur Elise (a simplified version) so your cartoon was doubly timely.  Stay strong and keep in touch here, we love to hear from you.

Lou

[Karen_L]

So glad your doctors are such diligent hunters. Your family will be such a joy to have around -- and, as your body begins to accrue the effects of the treatment, I hope you will let them help you. My mother, who moved in just before Covid lockdown, basically took over the house during my treatment. I could not have done it-- treatment, family, etc.-- without her help.  Good luck with the oncologist Monday!

Karen

[Lizzy]

Hello again everyone, another quick update. Since writing last on Friday I had a seizure at 3am on Saturday as part of a reaction to Thursday's gamma knife treatment. Thankfully EMT and ER got me straight with Keppra and I pretty much came through unscathed but tired. Family arrived Sunday night from London, best medicine ever!!

First chemo did proceed on Monday (minus Keytruda as planned). Yesterday wasn't too bad for side effects, I am hopeful that it continues to be kind, and I am on the 21 day cycle plan. Today I have another gamma knife session to the head at 10am EST. We are taking things day by day as we watch and learn the potential side effects from each of the treatments. Family is being absolutely brilliant. Right then, signing off for now. Am feeling the need to investigate the porcelain, a notion I guess you are ALL too familiar with. LOL.

Thank you to everyone for your love and support, til next time, Lizzy

[Lizzy]

Hello again everyone, another quick update frome me. So since last posting here's where I'm at.

The head issues - I've had 3 more fractional gamma knife sessions since last writing. No major reactions from each, just a panic attack during the first one with mask on. I didn't realize mask ones were done without any kind of sedation, so being fully aware of the pressure to my face as it expanded into the mask and feeling a bit smothered was a bit of a shock. But my oncologist presecribed me some adavan to take before going in to feel more relaxed. It has done its job wonderfully each time since. Two more sessions are scheduled before Christmas, then it will stop pending a new MRI/CT to see how much was actually taken and if anything else needs to be done at this point. Overall side effects have been numbness and tingling in my right arm, hand, and leg, with the occasional headache. No further seizures so Keppra is definitely doing its thing.

The big tumor in the upper left lung lobe - started daily radiation for that this past Monday and that will continue daily Monday through Friday until 12/31, then they will evaluate how many more weeks will be needed to shrink it back, or if it has shrunk back enough to reach its goal of taking the pressure off my 3rd rib. Only real side effect has been itching (like when you get when you've gotten too much sunburn), and am using a topical cream to help with that.

Chemo - overall had very mild side effects, mostly tiredness, and some of my bloodwork results have necessitated new meds to bring some things back into normal range. Has new med for the Edema my hands and ankles, and a new med to sooth the mouth and throat sores.

So overall, everything is going to plan. My biggest thing is tiredness, but I'm making sure I am listening to my body and resting when I need to.

If I don't get to post again before Christmas, wishing you all the very best for you and your families over the Holiday period.

Lizzy

[Judy M2]

Two years ago at this time I was undergoing treatment too. It sounds like any side effects you're having are being controlled, so that's a positive. You can expect chemo to mess with your bloodwork for a while. For mouth sores, MuGard is fantastic but awfully expensive. My wonderful chemo nurse simply gave me a bottle! 

Take things easy and I hope you get through your treatments without any other problems. Happy Holidays to you and yours.