Introduction - Isabelle49

[Tom Galli]

Isabelle,

Sorry I missed your post about the latest consult. I was visiting my granddaughter over father's day.  So, let's address your questions or concerns.

• Fast growing NSCLC--yes it happens. My tumor didn't show on a chest x-ray and 4 weeks later, it was large enough to fill my main stem bronchus causing me to cough up blood. My cancer type was NSCLC, squamous cell.
• Seeing Radiology and consider chemo--might be a good plan. A radiation oncologist has a different approach to killing tumors.  He or she uses either conventional radiation or precision radiation, often paired with chemotherapy.  My first treatment was conventional radiation with weekly chemotherapy for six weeks and it dramatically shank my tumor. Later, when after several recurrences showed the chemo effect waning, a radiation oncologist used a form of precision radiation (CyberKnife) to fry my remaining reluctant tumor. So I'd see a radiation oncologist as a next step.
• Shortness of breath--again we share a symptom.  I had no shortness of breath till I started coughing up blood, then I could hardly breathe and suffered a lot of wheezing and coughing. I thought my cause was the rigid bronchoscope used to biopsy my tumor. My doctors told me that might have irritated things but the cause was the tumor's pressure on my trachea.  I suffered wheezing, congestion and shortness of breath till I was midway through my first line treatment. Then the radiation took hold and reduced the tumor minimizing these symptoms.
• A negative answer to your questions--could the answer have been realistic and not negative? Lung cancer is very hard to arrest and a large mass is harder still. That doesn't mean impossible, just hard.  Could this have been the essence of your doctor's answers?

I'd engage a radiation oncologist and see if precision radiation can "blast the mass." This might be paired with chemotherapy.  The radiation and chemo will cause side effects but don't forget, one of the principal side effects of this treatment is eliminating tumors.

Stay the course.

Tom

 

[Isabelle49]

Thanks Tom. On further thought, I think maybe the doc was negative because this is not a positive situation and he could not have been aware of background or whether I had done any research on the condition. Granted the inter webs isn’t always correct but I do try to locate research papers on subjects related to health conditions rather than just general information. That’s an RN thing. Oh the onc doc was surprised at the end of our visit when I mentioned to him that I had been and RN for 33 years. I do appreciate your input and feel it’s always good to gather information from those who have been there. Nothing like “hands on” experience!!! Thanks.

[Isabelle49]

Tom did you have any skin issues with radiation or GI problems, such as inability to swallow? Curious as a good friend had the inability to swallow for a very long time.

[Tom Galli]

Isabelle,

Yes unfortunately two types of skin issues: a sunburn like redness during treatment that was painful and scarring in the form of radiation dermatitis. 

I also had a sore throat during treatment but no difficulty swallowing or GI issues. These were from conventional radiation. 

I had no side effects from CyberKnife. 

Stay the course. 

Tom

[ColleenRae]

Isabelle,

Just read all of the posts for this thread and wanted to let you know one more of "us" is thinking of you and wishing you well. 

I, too, am a lung cancer survivor (although I'm still grappling with this) but have only undergone lobectomy (right upper lobe last October). My second scan is approaching (late August). My first post-op scan was in February... The radiologist from the imaging center reported a tumor on the left upper lobe that he believes to be "another slow growing malignancy". My surgeon did not agree and believes it is benign and unchanged for the past two years. Another cancer center reviewed the February scan and they agree with my surgeon. But my local pulmonologist agrees with radiology and is convinced this is another cancerous tumor. I'm not sure who to believe, so basically trying to ignore all of this until the next scan... I had to wait and watch for almost two years with the first nodule. You'd think I'd be used to this!

I'm glad to see you have utilized this site and the support of some great people here... It was / has been a blessing for me. I am not as knowledgeable like so many others here... They have probably been one of the best resources / sources of help that I've found in my cancer journey.

I'd just like to throw my two bits in regarding telling family about your "new"... My father is now deceased.  In the mid-1990's I believe it was suspected that he had lung cancer and/or esophageal cancer. I never did find out.  He kept this information private. The only way I found out something was up was that he called me very early one morning from a hospital in Seattle to tell me he was having surgery in a matter of hours and might not be able to speak with me again.  I was upset and I was pissed at him for not letting me know in advance. To make a long story a bit shorter, all went well from what I could gather. He did not lose his ability to speak. Outwardly, he seemed fine when I was able to see him again - although I saw the red "burn" from radiation on his neck. He refused to talk about the situation. I suspected he possibly had throat cancer but I never knew if they found lung cancer. Whatever treatment he had appeared to be quite brief and he had resumed his regular activities.  He passed away about 10 years later from a stroke.  I'm not sure why he chose to keep his medical information private from me (and the rest of my siblings; I was the only one he called from the hospital). I was pregnant at the time - this would have been the first grandchild - so maybe that had something to do with it. 

In any case, there are many reasons why I wish he would have let me know about his diagnosis... I was his daughter. I loved him and would have wanted to help in any way I could if he needed it.  Now that I have experienced cancer myself, I wish I knew what kind of cancer he had... what doctors he went to, etc.  I completely understand the reasons why you weren't going to tell your family. I think we've all learned that cancer does not wait for an invitation and there will never be a good time for it to show up. Our own lives and those of our loved ones will all be affected by this. I have one child, an adult disabled son who lives with me. I had to tell him right away due to our living situation. It was difficult but sharing this experience together brought us even closer in many ways.  I needed his support more than I realized

Hoping you obtain the best care and support possible, Isabelle...

[Isabelle49]

Tom, thanks for the info re GI effects and skin issues, much appreciated.

Colleen, thanks.

[Isabelle49]

Saw Rad-onc today. I like him, seems genuine, said some positive things. Will have MRI of brain on Saturday and depending on results will start chemo/rad on July 1. The machine  in use is the only one in New Orleans: Varion Trilogy linear accelerator.  I did a look up on it and sounds very techie!!! So, will see. Will probably talk to my girls after I have the MRI results, so that will be very hard. How do you hurt someone so badly that you love so much?

[Rower Michelle]

You’re making good progress on the diagnostic path Isabelle. 

Those early conversations are just devastating to have.  My parents, despite being very close to me, were the last people in the notification chain.  I “practiced” with others who were not associated with my family.  Telling the story got a little “easier” when it came time to talk to Mom and Dad.  

I told a lot of people by text so they could let that news sink in before I next spoke to them.  I didn’t feel pressured to have these conversations face to face.  I think this whole deal is harder on my parents than it is for me. 

Theres lots of great advice from your friends here on how to get through this next phase.  Hang on- better days are coming.  

Michelle

[Isabelle49]

Thanks Michelle

[Rower Michelle]

Isabelle do you have any of the biomarker tests back yet? 

[LouT]

Isabelle,

Glad you are liking your Rad-Onc and good luck with your next phase of testing.  You brought up telling your kids before and I gave a general kind of answer.  I'll start by saying that while every family situation and dynamic is different we all have some similarities.  In my case I have two daughters; one, single, a professional, living in NC, 15 minutes from us and the other a nurse, married, children and living in Chesapeake, VA.  In my case I would only get a definite diagnosis during the surgery (Open-Thoracic Biopsy) on my lung so I couldn't wait for final definitive testing before telling them.  It is hard to look at your kids (regardless of their age) and share information like we have all had to share.  I discussed holding off until after the surgery (on the 10% chance that is was a benign nodule), but my wife reminded me how close we were as a family and that my girls would be angry with me if I didn't tell them and they could only find out after I had surgery, so three weeks before surgery I told them.

My younger daughter (the planner) was initially very upset, but strengthened very quickly and asked me what I was going to do to make sure I recovered well from surgery (she is also a bit of a health nut).  From then on, she "managed" things for me (for which I was quietly grateful) from my pre-op appointments to arrangements for make sure my wife would be okay while I was in the hospital (my wife is in early-stage Alzheimer's).

My older daughter (who always seems very controlled)  didn't blink when I told her, but kicked into "super-nurse" role and made plans to come down and stay with me to bring me back to health.  She also gave me a list of things I was to watch out for and to tell my doctors and nurses while in the hospital.  When I got home I really didn't need her to come and since she has 5 kids, including 10-year old triplets, to care for I finally convinced her to not come, but to make a shorter visit later on.  But she checked on me constantly and provided some very good coaching.

Sorry to drag this on a bit, but I just wanted to show you that our children can be pretty resilient.  In my case my daughters became part of a support system I wouldn't have had without them.  They also felt that they were part of my process and could contribute to a positive outcome (which they surely did).  I am grateful for them and glad I made the decision I made.

I realize children of different ages would require different approaches for something like this, but they can bounce back better than we sometimes think they can and become part of your support system.  I'm sure you'll do what is best for your family, but I thought I'd share my situation to offer any help it may provide.

My prayers continue for you,

Lou

[Isabelle49]

Wondering how much I have racked up in medical costs this last few weeks? Going from someone who had nothing but babies and neck surgery in 69 years to who know what in numbers. Kind of scary, not sure I want to know what the numbers are. I’m betting I’ve hit close to $50K at this point. Good grief!!!

[Isabelle49]

Lou, thanks. Am getting down to the wire on telling my girls, 49 and 50 years old. Once I get the results of the brain MRI I’m having this Saturday I will be talking to my girls. One is an RN and has always been extremely close to me and very sensitive emotionally. I know she will be affected the worse. The other girl, who knows, she is pretty ditzy. They might turn the tables on me though. Had dinner last night with my RN daughter, her daughter and daughter’s fiancée. It’s a real job not to slip up, but over dinner is definitely not a good time for the discussion. The RN’s daughter and fiancée are getting married this November and all I want is to be able to attend their wedding plus I don’t want to darken their days of happiness. This is a nasty place to be.

[Isabelle49]

15 hours ago, Rower Michelle said:

Isabelle do you have any of the biomarker tests back yet? 

So far, this is what I have: poorly differentiated non small cell with neuroendocrine differentiation. 

EGFR wild type, No ALK/ROS-1 rearrangements, PD L1 tumor proportions score 0%

 

The rad/onc mentioned there are other test that are being sent out for. RN for 33 years, know hardly nothing about oncology.  Thanks

[Rower Michelle]

This is like being thrown into the deep end of the pool with cement shoes.  I’m not familiar with EGFR wild type and nueroendoctine differentiations.  That’s a new one for me. I’m assuming the tests were sent to Foundation One in Boston for a full mutation panel.  That will be the final round of test results needed to inform the treatment plan. 

As for the cost of this- it’s mind blowing. All told with my entire diagnostic process which included two ED visits, one three day hospitalization, the molecular panel & scans tallied close to $250,000.  Like you all I ever had was the annual physical. Crazy! 

You’re in the home stretch now...

Michelle