Newly diagnosed, awaiting PET scan

[Rower Michelle]

Thinking about you & hope the appointment goes well tomorrow. 

Michelle

[Clarrythand]

On 12/2/2018 at 10:33 PM, Tom Galli said:

Lisa, 

Sorry to learn of your diagnosis. Sadly, surprise is a common condition. Lung cancer rarely displays symptoms. So bottom line up front: almost 15 years ago I had a right pneumonectomy. I’ve lived a full life with about about 38% of total lung capacity. The reason it is not 50% is I had a metastasis to my left lung after surgery and further treatment reduced capacity. I wouldn’t worry about life after surgery. You won’t run marathons but it hasn’t stopped me from doing things I enjoy. 

As a forum moderator, I can’t comment on practitioners or treatment facilities but you’ve likely done research on UPenn’s (Jefferson Hospital I think) cancer treatment reputation. 

You’ve got some new vocabulary to assimilate, quickly. Surf to LUNGevity.org Lung Cancer 101 and start the assimilation. TireReviews We’ll field your questions. 

You may notice a blog section on our forum. Mine is titled Stay The Course. Read my Ten Steps To Surviving Lung Cancer entry. One more thing: if I can live, so can you. 

Stay the course. 

Tom

Hi, I have also checked the link it really offers useful information. Thank you.

 

[LisaA]

Love and thanks to everyone for the kind thoughts, prayers, messages. I really appreciate it.  This morning was the biopsy. I'm home now and feeling a little beat up, but overall as well as can be expected.  Now the waiting begins, at least 3 weekdays, up to 5 days for the results.  I don't know which is worse, knowing or not knowing.   My pet scan results also recommended an MRI due to sclerosis lesions of my iliacs, so that is scheduled for Thursday. I'm hoping that is likely due to a vitamin D deficiency that I had before.  

So I'll be taking it easy the rest of the day and taking light walks through the house to keep things moving. Continued prayers and good thoughts are so appreciated. Thank you all for being here to talk to.

 

[Rower Michelle]

Hi Lisa 

Glad to hear the procedure went well. Try to kick back & relax.  This is what Netflix was invented for. 😊

Michelle

[Roz]

Lisa,

Thinking of you as you wait for your results! 
I agree with the Netflix recommendation-something to try to take your mind off of it!

 

Ro

[LisaA]

I just got a call from my Dr regarding my biopsy. The final report won't be ready for a few days, but preliminary results are "atypical cells present".  She said it most likely will prove to be cancer, with specifics to follow next week. Feeling so blue right now.  

 

Has anyone ever heard of preliminary results being "atypical cells" and it not be cancer?

 

[LexieCat]

I'm sorry, Lisa.  And it sucks not to have something more definitive.

Still, as I was saying, assuming that it's cancer, it looks to be a very early "catch" and there's a good chance that surgery will deal with it completely.  For most people, they don't have a clue they have cancer until it's so far advanced that the most that can be done is to try to stay ahead of it.  You've got a shot at knocking it out completely.  Try to focus on the "good news" aspect of this.  Right now, there's every reason to believe you will have a good outcome.

Hang in there!

[Rower Michelle]

Hold on tight Lisa. There’s still a lot to do before the final results come in.  Then the biomarker testing will be next if necessary We’ve all been through this-you can do it.  I treated myself to chocolate milkshakes during my “waiting days”.  Stay off the internet- it’s a scary place. Wait until you know more. Our prayers are with you.  

Michelle

[Tom Galli]

Lisa,

I've never heard of "atypical cells" as a biopsy result. That could be most anything.  Waiting, as you are now well aware, is the worst part of this disease especially when in the diagnosis phase. I do hope you receive a more definitive result quickly. But, from my understanding of your situation, Lexie's characterization is correct. If the biopsy proves cancer, it is an early discovery and therefore there is a high probability that treatment will yield no evidence of disease (NED).

Stay the course.

Tom

[LisaA]

Thanks all.  The "atypical cell" report was just a preliminary from the immediate pathology done during the actual biopsy. They will of course type it, grade it, do genetics and more. Just so hard waiting now and of course I'm thinking the worst case scenario. And to make matters worse today is my birthday... what a sucky way to spend it!  😥

[Laurel]

Do what you can to enjoy your birthday.  Take a walk, meditate....whatever to give your mind a rest. Waiting is so hard. Hugs.

[Curt]

Lisa I’m going through a similar joirney as you’ve described.  Mass picked up on an XRay.  Follow CT and PET scan with similar findings as yours.  My doctor is recommending a lobectomy without having biopsied it.  Apparently they can’t.  I’m getting a second opinion on Monday. I hope all goes well with your biopsy.  Hopefully having some answers will help clarify the path forward and relieve some of the anxiety for you.  

[LisaA]

Well, I now have results to share. 

I had my MRI today to follow up the PET scan showing possible metastasis to my iliac bones. Final results are NO findings to suggest mets to bone or lymph nodes at this time.

Biopsy results of primary upper right lobe proved to be adenocarcinoma. So surgery is the next step. I have an appointment with my surgeon on Jan 2nd to make our plans.

Thanks for all the prayers, I really appreciate everyone here. 

 

[Curt]

I know adenocarcinoma isn’t something you want to hear but the fact that there are no Mets is really positive.  I understand from others that recovery from the surgery is not so bad and that it is a very effective treatment.  I have a follow up on Monday and I’m hoping they tell me they can do a biopsy on me.  I’m really struggling with doing the surgery without knowing for sure what it is.  Hopefully this coming week will be filled with plenty of happy distractions until your next appointment.

[LexieCat]

Yup, this result is far from really bad news.  The surgery ISN'T so bad and if, as it appears, you are very early stage, that may be the only treatment you'll need. Every abdominal surgery I ever had, including my C-section, was more painful and involved a longer recovery than my lobectomy did.  

Try to enjoy the holidays.  Your path forward is clearer now and will be even MORE clear after the surgery.

[Rower Michelle]

Hi Lisa, 

Agree with all of the above.  No mets is very good news! You’re also fortunate to live in an area where there is cutting edge treatment available so the likelihood of a great surgical outcome is very high. 

You got the appointment with the surgeon scheduled pretty quickly- out here someone has to wait for weeks just to be seen. 

One step at a time, one day at a time.  You’ve got a whole group of new friends to help you pull through this chapter.  

Michelle 

[Tom Galli]

Lisa,

A biopsy reporting cancer cannot be a good thing but all things considered, you've got the best consequence. With surgery in play as a curative agent, outcomes are very very good. Find a surgeon you have confidence in and 

Stay the course.

Tom

[BridgetO]

Yay for no mets! Are you able to have your surgery by VATS, or do you know yet?

[Roz]

Lisa,

I had surgery in October 2017 (thoracotomy) to remove my upper right lobe. Prior to that I had surgery in Sept 2017 (VATS) to remove my lower left lobe. You will do fine with the surgery no matter if it's VATS or a thoracotomy. The recovery is very different, but in your case, especially, it sounds like it's early stage. Pick docs that you have confidence in and be confident in your ability to recover and get stronger each day following the surgery.  Ask any questions and I'll try to answer!!

 

Ro

[ROAD3000]

Hi Lisa.

Just reading your post, sorry you must be a wreck.

In December 2012  I had a lower right lobe thoracotomy myself mine was Adenocarcinoma and I was ruled 1B I had no chemo.

Find a doctor you trust, surgery well I wont lie, it hurt like hell but I recovered quick, and my lung power recovered pretty good.

I did great myself until about a week ago and my yearly low dose CT they found 2 new nodules 6mm and a 7mm in my upper right lobe...............ugh so now I get to play the waiting game for 3 months for another CT to see if it grows..

Hang in there Lisa I feel your mental pain been there.

Groups like this are great to vent, lots of us have been there.

Jerry       

[LisaA]

Bridget, I do not yet know if it will be via VATS. I will find out on Jan 2nd.  I'm thinking yes, only because the mass is essentially right under my armpit area. That is where they went through to do the biopsy.  I'm concerned most recently with what my lung function will be post surgery. With years and years of asthma and smoking causing COPD my PFts are already in the toilet. Even having the biopsy has had me so inflamed this week. I guess having 8 needle passes/core biopsies tend to shake things up a bit in there and causes localized swelling. I have had to use extra inhalers and Medrol this week to counter the post biopsy inflammation, but got through it working full time. I have read where having a lobectomy can actually increase lung function due to the space for existing lung to expand.  Also I will find out on Jan 2nd what we are going to do about that 8 mm nodule in the RLL.  In the meantime, I was told to exercise moderately which I have been doing.  

 

[BridgetO]

I'm sure you'll do fine with either type of surgery, but VATS is easier. Hang in there and keep us posted. Fingers crossed for good lung function.

[Rower Michelle]

Hi Lisa 

I’ve been thinking about your upcoming appointments & wanted to share some of my learnings with you to excelerate your recovery....

Just want to plant the seed about working full time- depending on what you do- you might want to consider taking some additional time off to let your body heal completely.  We live in a  go-go-go world.  I was really lucky to have great short term disability benefits.  It’s worth looking into.  The Employee Assistance Plan has all kinds of FREE support stuff as well.  

During your recovery you might want to ask the facility if they have any holistic healing programs.  I love my yoga class which surprised me.  Best part is it’s also FREE.  I’m taking advantage of a lot of these healing programs & they are helping.   I had to advocate for myself & ask about what was available.   Your docs won’t know but the social workers will.  I’m saving hundreds of dollars a month to support my recovery. 

Both of my docs (the Integrative & Medical oncologists) agree getting some exercise in every day is critical.  They told me exercise raises the body temp which can trigger cancer cell death. You don’t have to go full throttle-20 to 30 minutes of walking will be a big help. It will be important not to over do aerobic activity.  

My best wishes to you Lisa! 

Michelle

[LisaA]

So at the moment only my children know about this diagnosis. I have not shared with my coworkers which has to soon change.  I am a very private person and do not like to discuss personal things at work, especially of this nature. I dislike terribly being the subject of gossip (which happens at my workplace all the time) I also dislike people feeling sadness or pity toward me.  But I am going to have to disclose this coming week because either surgery or chemo is about to begin and I will need to take time off, maybe a long time off. 

How will I ever say these words.  I'm more terrified of this than I was the diagnosis. I am so committed to my job.  What should I even say?

[Tom Galli]

Lisa,

First, Merry Christmas. 

I’m also a private person and felt uncomfortable telling people about my diagnosis. Finally, after reflection, I just told people I’d been diagnosed with lung cancer. I found people to be very understanding and helpful. 

I do understand your concern but as you move into treatment, you’ll find yourself less bothered about people’s opinions. We can’t replace your friends and work associates but everyone here know exactly what you feel. So think of us as your new best friends. 

Stay the course. 

Tom