First visit with oncologist today

[LisaA]

I went to first visit with Mem. Sloan Kettering  Oncologist today to find out treatment options other than surgery.  They talked about combining chemo with radiation, which they can start next week. They also talked about chemo with possibly surgery after shrinking tumor (I have consult with my surgeon tomorrow), but said that surgery isn't any option after radiation.  

They suggest that I start short term disability at the same time as chemo to be able to focus on taking the best care of myself. 

MSK puts it at Stage 3a, while UPenn calls it Stage 1b.  I thought this was an interesting difference.  (I have 2 tumors in right lung, upper and lower, one very very small, one not so small)  For this reason, MSK puts it at  3a. Since same lung, UPenn puts it as 1b.  very confusing!

I have to make a decision on what I am doing tomorrow after I see my surgeon. I'm thinking that being on o2 after surgery probably won't be the best choice for my lifestyle and leaning toward the chemo/radiation route.    Does anyone have anything to contribute to this, please? It's such a huge decision.... I'm dazed at this moment.

Also it turns out that I have a KRAS gene mutation that perhaps contributed to this happening. Is this a common gene mutation?

Please send prayers, good thoughts as I have such a huge decision to make right now.

 

 

[LexieCat]

I'm a bit confused, too.  I thought only the one nodule/tumor was actually biopsied?  Was the other one biopsied as well?  

I just don't recall your referring to two tumors before--nodules, yes.  Are you sure they didn't say IF the other one was cancer it would be IIIa?

Here's a Lungevity article about KRAS:  https://lungevity.org/for-patients-caregivers/blogs/experts-blog/kras-mutations-in-lung-cancer-are-we-close-to-targeting   It currently isn't a targetable mutation, but that could change.

[LexieCat]

Oh, and I believe I already told you the way I would lean if a trusted doctor told me that surgery would be likely to require me to be on oxygen.  I'd go with the radiation/chemo if that had a reasonably good chance of knocking out the cancer.  And I don't think I'd worry about the radiation removing surgery as an option.  If you've already been told what the outcome would be after surgery and that's not acceptable, then you wouldn't be looking to have surgery anyway, right?

[Tom Galli]

Lisa,

I think the important thing is both Stage 3A and 1B can be treated with surgery.  I understand why surgery is problematic after radiation -- radiation complicates tissue healing.  I had surgery after radiation and also had complications with healing so surgeons are moving away from that treatment.

Let's look at your O2 concern from a different prospective.  Surgery is the most effective treatment for lung cancer.  Adjuvant chemotherapy often follows to clear the bloodstream.  These two treatments have high probabilities of yielding no evidence of disease (NED).  Chemo/radiation can be effective but note I say can be rather than is effective.  Prior to surgery, my pulmonologist projected I'd have enough lung function to live a normal life without supplemental O2.  But, after surgery and metastasis to my remaining lung, he projected I might need O2 after treatment.  I now live with about 38-percent total lung function and my life is near normal.  No marathon runs or mountain climbing in the Rockies, but I'm fine.  The pulmonology assessment is a projection not a certainty. Most importantly, with surgery being the best path to NED, you'll have life to enjoy even if it includes the burden of O2.

Your KRAS mutation means your adenocarcinoma will not respond to targeted therapy.  Here is some information on KRAS.

Of course I'll pray for you as you make this decision.

Stay the course.

Tom

[LisaA]

Lexi there is the large one in upper and then the 8mm nodule in lower that was not biopsied, but presumed to be malignant as well

[LisaA]

Thank you, Tom for a different point of view and the article. It's so hard to know which is the better choice

[LexieCat]

I'm wondering why it's "presumed" malignant.  Did they tell you?  It sounds like the doctors at Penn don't think it's necessarily malignant.  Were they talking about removing BOTH the biopsied mass and the small nodule?  

I'm not trying to confuse you more, it's just that I'm having trouble understanding what both places told you.  If your surgeon hasn't been clear about what, exactly, would be removed, I guess you can clarify that tomorrow.  

Yeah, unfortunately, some of these decisions are tough ones.  No treatment comes with a guarantee of the outcome, and there are often alternatives available.  

The surgeon who predicts you will need oxygen--was that opinion made in consultation with a pulmonologist?  I think I'd value a pulmonologist's opinion over the surgeon's in terms of the likely effect, long-term, if you have surgery.  Do you have a pulmonologist you've been working with for your COPD?

[LisaA]

Lexie, the surgeon's initial plan was to remove the upper lobe with larger mass followed by both chemo and radiation that would take care of the small nodule as well.   

The need for future o2 was based on my low fev1 and the surgeon's prior experience with such cases.  My fev1 is lower than any other lobectomy patient he has done so while he is willing to do the surgery he explained that I would most likely need o2 due to lost tissue. 

[LexieCat]

OK, thanks for explaining that.  

I'm sorry it's such a complicated decision.  The only thing I can suggest is that when you DO make the decision, try your best to make up your mind that you will be OK with however it turns out.  It sounds as if there are pros and cons to both approaches, and given the fact that nothing is a sure thing (for better or for worse) either decision could be reasonable.  Choose whichever approach makes you the most comfortable, and then put your energy into your recovery efforts.  

Sending a hug of encouragement!

 

[Rower Michelle]

Hi Lisa 

I’ll pray for you tonight to find peace & guidance in your decision. Either way,  you’re  fortunate to have access to great medical resources.  Lexie has given terrific advice: Once you’ve made your decision- then have confidence in yourself to go forward.  

There is progress being made with the development of targeted therapies in clinical trials now. With hope there could be an even better option for you in the future.  Hugs to you! 

Michelle

[LexieCat]

Lisa, just one other thought.  You mentioned that MSK could start treatment next week.  Are you thinking of getting your treatment there?  My impression was that you were in the South Jersey area, which would make Penn a much more convenient location to receive chemo and radiation, which you had mentioned would be the alternative if you decided against the surgery.

 

[LisaA]

Lexie I am 16 miles from the MSK Basking Ridge center and  1.5 hours from UPenn. If surgery is my choice the UPenn surgeon is one of the best in the U S.   If I choose chemo radiation Philly is too much of a drive for me daily.  The reason I went to UPenn as my first visit is because I will drive to Philly but never to Manhatten for surgery

[Steff]

Lisa,

Let me give you a perspective from a daughter whose mom has had to be on oxygen on and off for 10 years....my mom still does everything she wants and everything she has to do everyday.  Throughout her entire lung cancer journey, she has been the caregiver of my dad - she mows the lawn, snow blows and shovels snow, crawls under the house, drives and sets up their motorhome, all with oxygen strapped to her back.  She has found ways to make daily activities easier and asks for help when she needs it.  My mom is on oxygen right now. Last weekend we walked around Boise, attended a concert in which she sang along and had the best time - all while on oxygen.  She does pulmonary rehab twice per week and when she has time, she goes to water aerobics (she doesn't need to wear oxygen in the water).  She has found ways to deal with the complications of COPD and then lung cancer.  My mom is not the epitome of health and is obese.  She gets frustrated that she cannot move at a pace she once did, but her slower pace has enabled her to enjoy things more.  The most important thing to her is to be alive, to live her life, to do the things she loves.  And she does all of that, just with oxygen on her back. When you ask her if she would have surgery again, she says "absolutely".  Her life did not end because she has had to be on oxygen, it just looks different, which is not a bad thing.

When my mom was initially diagnosed with lung cancer, we did not know how persistent lung cancer was.  Although we never considered not doing the lobectomy, knowing what I know now about lung cancer, I know my mom made the right choice for herself.  Despite having a recurrence, we are still thankful for the surgery because the recurrence may have been much worse without the surgery.

I'm not trying to sway you either way.  I just wanted to give you the perspective of a daughter of someone who is and has been on oxygen off and on for awhile.  I know this decision is not easy for you, but I am confident you will make the right decision for yourself.

Take Care,

Steff

[LisaA]

More visits yesterday, back at UPenn. Surgeon does feel that I would be best served with chemo/radiation instead of surgery. So moving forward with Mem Sloan Kettering with these treatments. I feel blessed that it is 16 miles away from home so driving there will not be such a burden for me.  Decision made I guess. Prayers please as chemo begins next Tuesday.

[LisaA]

Steff, I so appreciate your reply and I pondered the importance of it for some time. Your mom is so lucky that she can still do so much on O2 therapy. Shoveling snow!? Wow, I can't even do that now! Kudos to her! She is one strong lady!  I know that there is a (small) chance of actually achieving better results after surgery, much like a lung volume reduction surgery, but there are far far more studies showing a somewhat severe further reduction and it is just too much of a gamble for me to take as a "young" active, working person that is not willing to give up hope of continuing that. I pray that I am making the best decision. If only we could see the future and know what choices to make!

Thank you so much for your very touching, frank reply! 
'

[Katherinea]

Lisa I’m interested in going to m s k with my mom in basking ridge. Please can you tell me who you saw? My mom Is also kras positive. We are currently at Rutgers.. They missed her diagnoses six months ago.  Now she is stage four! She survived two heavy doses of carboplatin and pacl.  One dose of immunotherapy.  We are stopping chemo for now as she can’t  handle it.  

[LisaA]

Katherinea, I am seeing Dr Iqbal for medical oncology and Dr Hajj for Radiation oncology.  I won't drive into NYC, but I feel like Basking Ridge was well run and super quick to come up with a plan. Hoping for good results!

 

[Katherinea]

Thanks for reply Lisa.  We spent 3hours today for lab work and results at Rutgers.  We were there at 845.  Keytruda infusion didn’t begin until after 12. My mom was done and ready at 215-  mind you her apt for infusion was at 9, can u imagine how stressed out and tired she was.  She refuses to go back there after what she went thru.  We are scheduling an apt in basking ridge I’m glad things went smooth there. We will prob end up going there. 

[LisaA]

I wish you and your mom luck there Katherinea.  I have to say I spent a lot of time waiting around there as well. My appt was for 10:30. I didn't actually get to see the Dr until close to noon and wasn't done until after 2. I can't speak as to how infusions go there though. One super nice thing they offer that I'm thinking you will like is free valet parking. Super easy to pull in and car was back to me within 5 mins.  Good luck, let me know how you make out there!

[Rower Michelle]

Hi Lisa 

How are you feeling assuming you had your first treatment on Tuesday? 

[LisaA]

 

17 hours ago, Rower Michelle said:

Hi Lisa 

How are you feeling assuming you had your first treatment on Tuesday? 

HI Michelle,

It's turned into a more complicated thing than I originally hoped for. The oncologist reached out to the lung surgeon I had been seeing and he and she decided that I now need a bronchoscopy before anything is started. (Ugh, more and more time before treatment starts! Getting so frustrated!)  I was able to get that scheduled for one week from today. 

I talked to radiation oncology office today, now they need me to establish a relationship with a pulmonologist before they can start radiation to optimize my lung function.  So scheduling a new patient office visit puts me in the middle of Feb. 

It is just delay after delay for tasks that could have been done earlier. It's now been 8 weeks since diagnosis and time is ticking and I'm getting more symptomatic day by day.

Thank you for thinking of me on this day, I'm touched that you remembered! 

[Rower Michelle]

Hi Lisa

Its all part of the process.  All told it took about me two months to get rolling on my treatment plan.  The more diagnostics going into this will result in a better outcome for you. I know it’s so frustrating to do all this waiting.  You’re in the home stretch now.  See if you can figure out who your nurse case manager is.  Mine is awesome & she took care of all the scheduling & coordination of the treatment team.   Keep us posted.  Thinking & praying for you! 

Michelle