Introduction

[Newly Diagnosed]

Greetings.  

I'm a newbie here.  I've had a diagnosis of lung cancer …  3.0 x 2.6 cm, with dark portion 6mm.  
"Lepidic predominant invasive pulmonary adenocarcinoma."

I have now been referred to a thoracic surgeon.   

The thoracic surgeon would remove 3 lung lobes, using minimally invasive robotic surgery.  Weighing risk / reward, I have an unanswered post-surgery question. As yet, no one can predict if that might effect, for example, how long I could hold a note, or how deep a breath I could take – examples from moment-to-moment daily life.  Instead, his analogy is to climbing a steep hill:  I'd still get to the top, but be short of breath sooner.  

Does anyone here have any experience to share ?

I have asked my pulmonologist for a referral to a pulmonary radiologist.  
 No one has mentioned IMRT, or cyber knife, yet. Has anyone here had either ?

Until I decide on a course of treatment, I will begin seeing a Traditional Chinese Medical specialist, with background at Shanghai's cancer clinic.  

And I will, thank G-d, continue breathing in and breathing out.

Thank you.

Blessings.

 

[LouT]

Hi and welcome to our forum.  So your medical team is looking to remove 3 complete lobes.  In my case I had one lobe removed and (as a musician) I can still hold notes and do workouts 6 days a week.  But I can't tell you what the effect of three lobes would be since I don't know how healthy, overall, your lungs are.  I can tell you that we have folks here who have had more lobes removed and even a whole lung so I'm sure that they will be able to provide more experience in that regard.  Well also have folks here who have had cyber-knife and other forms of radiation.  As a matter of fact we have folks that have had a wide spectrum of treatments so please hang on.  I'm sure you'll be hearing from them soon.  And yes, keep breathing in and out.

Lou

[Tom Galli]

Welcome here.

I'm slightly confused about your post (I'm always somewhat confused 😜). Anatomically, the right lung has 3 lobes while the left has 2. I assume your mention of removing 3 lobes entails a complete resection of your right lung. Is this correct? Do you have only a single tumor (3.0 x 2.6 cm)? If that is the case, I think removal of a complete lung would be overkill. One more point about your diagnosis. Have you had a PET scan and if so what were the results?

To your questions, my right lung was removed by a conventional thoracotomy (banana shaped incision) in 2004. I had a recurrence after surgery with 3 tumors showing up in my left lung. These were successfully treated after many cycles of chemotherapy and finally a CyberKnife (a type of precision radiation now generically called SABR--stereotactic ablative radiotherapy). Treatment however affected overall pulmonary capacity, and I now have somewhere around 30-percent of normal capacity. Even with the diminished capacity, a near normal life style is achievable. I can't run very far and am somewhat out of breath after say 3 flights of stairs, but I am fully mobile and many folks do not realize I'm breathing impaired.

So I've had both surgery and CyberKnife with good results. So much so, that in March, my medical oncologist pronounced me "cured" of lung cancer!

I'm not acquainted with traditional Chinese medicine, but if it were effective against lung cancer, there would be treatment clinics all over the globe and it would be covered by medical insurance. When I was diagnosed in 2004, the Internet search pages were filled with all sorts of lung cancer pseudo-cures. Here is something I wrote sometime ago about these outlandish claims. So be careful out there!

Stay the course.

Tom

[BridgetO]

Hi and welcome. I had the same questions Tom had about the number of lobes they're proposing to remove, and the PET scan. During and after my treatment for lung cancer and two other unrelated cancers, one of them advanced and aggressive, I went to a clinic that provided acupuncture, shiatsu, consultation with a naturopath, and some supplements and traditional Chinese Medicines. The naturopath was  up to date on and supportive of conventional  cancer treatments. I found her extremely informative and helpful.  She approached the clinic's treatments as complementary rather than alternative and I thought that was a great approach. I am now NED (no evidence of disease) on all three cancers. I think the acupuncture was helpful with nausea after chemo and with stress reduction and relaxation.  I don't know whether the clinic's treaments were helpful otherwise, but they might have been, and they certainly didn't do me any harm.  I ran all my clinic-recommended meds/herbs/ supplements by the oncology pharmacist, who recommended against only one of them. It contained an animal product that appeared to be raw, which could cause a problem while my immune system was impaired by chemo:

My thoughts about complementary medical practices in cancer:

1. It should be considered complementary, not used in place of convetional treatment

2. It should be reasonably priced.

3. The provider should know about and be supporive of conventional treatment

4. It shouldn't make outrageous claims (this is pretty subjective)

5. It's always best to run stuff, especially medications and supplements by your conventional medical providers.

Good luck with your treatment.

[Judy M2]

I also saw an integrative medicine physician for symptom management who worked--and was friends--with my oncologist. She gave me herbs/supplements and acupuncture. The acupuncture was very relaxing. I don't know if anything actually helped but it didn't hurt. She has since had to step away from her practice to handle a terminal illness in her family but I'd consider going back if needed. 

[Rower Michelle]

Thanks great guidance from Judy and Bridget:  I also have a Board Certified Integrative Medicine Physician as well as a Licensed Chinese Medicine Practitioner for acupuncture. 

It's always helpful to involve the cancer center's pharmacist as well.   I'm glad I did.  What I learned is that there are many Chinese herbs that can seriously interfere with cancer treatment by "speeding up" the process by which a therapy leaves the body therefore reducing the effectiveness of the treatment.   Part of me thought it was traditional medicine's typical objection; however, a few years later I did meet a patient who did a Do-It-Yourself  mix and match approach and actually did render his therapy ineffective which tragically led to a recurrence.   

Traditional medicine is becoming more receptive.... a few weeks ago my oncologist recommended ginseng for long term therapy fatigue... but he also asked if "one of my village people" knew anything about ginseng dosing because there was an art to it.   I nearly fell off my chair.   

So it's possible to have the best of both worlds if everyone is working on the same team. 

Welcome to the family, 

Michelle 

[Newly Diagnosed]

Thank you, Lou, Tom, Bridget, Rower, Judy !

I wasn't aware my post was getting response until now, and was going to correct my goof-up, but had been overwhelmed.
Wednesday it began with an hour wth thoracic surgeon – proposing removing three sections, not lobes.  
Nurse followed up Friday saying that as they're upper lobes, and lungs fill from the bottom up, it would be unlikely I'd notice their absence.
( Sounds like many of you agree … ? )
My daily practice of Zen wouldn't want to decrease my lung capacity …

At the time surgeon mentioned other options were waiting ( he didn't recommend it ) or radiology ( he didn't recommend it ).

I went back to the pulmonologist and asked would he schedule an appoint for me with a pulmonary radiologist.  

Will be seeing the hospital's practitioner of both CyberKnife and DoubleBeam. 

I am appreciative of everything you're saying … and might yet still say … including complementary medicine, 
to which I'll devote a separate post.

No PET scan, Tom, and none as yet discussed.
Your story is so inspiring.  Am glad to hear.

After I see the radiologist – my choice of course will be:

• robotic surgery
• radiology
  
  I realize I'm in the driver's seat.
  I also would be immeasurably grateful if anyone wishes to share any of experiences or information regarding either / both.
  
   

 

[Newly Diagnosed]

Complementary Medicine

Thank you, Bridget, Judy, Rower, for your kind, valuable input.

I love Naturopathy, by the way, on principle, but haven't seen one myself.  Great that you found one in Kansas !

The day after my visit with the thoracic surgeon, I saw Michael McCulloch of Pine Street Clinic by Zoom.
I know one of the co-founders.  In an hour and half he suggested many things.  One of them was CyberKnife
which neither the pulmonologist nor thoracic surgeon mentioned.  He also mentioned the hospital's 
500 Cancer Gene program, where I might be able to get a "liquid biopsy" – via blood draw.   So, in addition

to whatever lifestyle / dietary / herbal recommendations he made, he was certainly helpful in my navigating 
the Hospital System.  


The day after my Pine Street consultation, I reunited with Dr P. Q. Kang.  
When I had been diagnosed with Hepatitis C ( after a one-time recreational drug use ) I began seeing Dr PQ Kang, 

here in San Francisco, regularly for many many years – because the degree of damage was still very low
and the viral load was too.  He took my pulse, looked at my tongue, listened to my voice, and prescribed 

a bag of herbs – from his own organic, pesticide-free growing fields, which I'd decoct and drink, along with 

his formulated compound capsules.  He worked at the Shanghai Cancer Clinic, one of the leading clinics for such
in China, and he comes from a family of Traditional Chinese Medicine (TCM) doctors.      During my years with him,
the degree of damage to my liver went from 1 to 0 ( on the biopsy scale of 1-4), but I was also using DNCB, and 

diet, Western herbs, etc. 

Of course, I don't expect either Pine Street Clinic nor Dr Kang will cure my cancer, but until I make a decision as to Surgery -vs- Radiology
I hope the complementary treatment will inhibit or restrain further growth, if not reduce it a little – and keep the rest of me in balance.

Your anecdote is interesting Rower. I can think of a couple from my own experience. But perhaps suffice it to say that there are 50,000 herbs 

that have been studied by other cultures for thousands of years – while our culture has been studying 5,000 herbs for a couple hundred years – 
and each from different views as to how life functions.  ( Plus or Minus )  And cross-overs are good whenever they enhance health.  Eh, non?



 

[Rower Michelle]

Here’s something in your backyard that is worth a look see from the Go2Foundation Lung Cancer Living Room in SF.  
 

 

[Judy M2]

The liquid biopsy is a wise suggestion but keep in mind that not everyone sheds circulating tumor DNA (ctDNA). Basically, if a liquid biopsy shows a mutation(s), then it can be relied on. If it doesn't, then a tissue biopsy should be performed 

Yesterday I watched a presentation by CancerGRACE.org and the oncologists discussed the 500 gene panel. They all felt that testing for 500 genetic mutations is sort of overkill and could be confusing, especially since today there are nowhere near that many targeted therapies for driver mutations. But the good news is that your pulmonologist is discussing biomarker testing. 

As for experience, I was diagnosed at Stage 3b two years ago and was not a candidate for surgery. I had 6x chemo and 30x chest radiation before starting on a targeted therapy for my EGFR mutation. I've been NED (No Evidence of Disease) since April. 

[Newly Diagnosed]

Good catch, Michelle !
I'll reach out Monday.

Thank you so much !
 

 

In health, 
 

[Newly Diagnosed]

God bless support groups – and Judy !

Thank you for your brief summary of what I'm sure is quite a journey.

Being a brand-new newbie, I may well backtrack to this post, as I go further along this trail

Just FYI, my pulmonologist recommended I see thoracic surgeon.  Period.  Everything else so far has been my initiative.
I haven't heard if he likes or rules out the liquid biopsy avenue, and you've shed perspective on it, meanwhile -
both shining a light and casting a shadow.  Excellent.

May I congratulate you ?

N 
N E D
D 

[Judy M2]

Thank you! Yes, this is a journey. A marathon and not a sprint. 

My primary physician diagnosed my lung cancer based on a CT scan and quickly arranged for me to see a pulmonologist, who did a bronchoscopy and took tissue for biopsy and biomarker testing. She also gave me recommendations for a radiation oncologist and a medical oncologist for chemoradiation treatments. I still see my medical oncologist and get PET/CT scans every 3 months but only see my pulmonologist occasionally. 

I think you should request a PET scan before undergoing any surgery. CT is fine but a PET scan will light up any other areas of concern like lymph nodes. 

[shahid younis dosondi]

Hello everyone , 

My name is shahid younis dosondi from pakistan . I am 65 yrs old. I was been a patient of non hodgkin lymphoma 2 years back . Cured by chemotherapy.

Since last 3 month was having cough , after all my blood test and covid test i was been negative . But last 2 weeks my breathing was not stable as finding fatigue . 

After again the pet scan and some other blood test which are received , i have been diagnosed adenocarcinoma patient of lung.

I am waiting for biomarkers test results to come.

 

[LouT]

Hello Shahid,

Welcome to our forum.  I'm sorry to hear about your diagnosis.  This is a place where lung cancer survivors will share their experiences with you to provide support along your journey.  I would recommend you start a new post under the "Introduce Yourself" forum (the one this message chain is in).  So that people can respond more directly to you and not confuse responses to you with those for "Newly Diagnosed".  

In the meantime when you do post can you please provide some additional information?  For example, stage of disease, size of tumor, is there any tumors outside of the lungs, planned treatment as well as any questions you may have.  At least whatever you can as it will help others to better share information with you.  In the meantime you can read "10 Steps to Surviving Lung Cancer; by a Survivor to find it click here.

Lou

[shahid younis dosondi]

Hello , 

Thank you i have introduce myself with pet scan report.

[Newly Diagnosed]

 

[Karen_L]

I'll add to the greetings. You didn't mention where your oncologist is located-- perhaps within a cancer center involved in research? If so, a team would review your case and make a recommendation for treatment. Right now, it seems you are trying to coordinate this between physicians yourself, which seems like it would be very challenging. 

The GO2 Foundation for Lung Cancer has, what was for me, a useful patient education handbook called Navigating Lung Cancer 360 Degrees of Hope: https://go2foundation.org/wp-content/uploads/GO2_Foundation_Patient_Education_Handbook_5th_Edition.pdf 

My diagnosis (Stage 3A, T2b-4.5cm N2 M0) with 2 mutations and the location of the tumors -- primarily, the location of the tumors-- meant I was not a candidate for surgery. But the information I received from the biopsy, genomic testing, and resulting recommendations of the cancer review board gave me a ton of information that guided my learning. 

Part of my treatment was 30-ish sessions of radiation (IMRT) plus chemotherapy, AKA chemorads. That was based on protocols for treatment out of a seminal research study, which I verified on the treatment protocols at the National Comprehensive Cancer Network (www.nccn.org). This organization is "an alliance of 31 cancer centers devoted to patient care, research, and education." 

Cutting out a hunk of your lung is a really big deal. Have you thought of getting a second opinion? I'd recommend it. I'd also recommend seeking that at a research hospital/cancer center, of which I believe there are some in the SF area.

When I looked at the National Cancer Center's list of their designated cancer centers, I found this one: 

UCSF Helen Diller Family Comprehensive Cancer Center
University of California at San Francisco
San Francisco, California
Comprehensive Cancer Center

I know I felt a real sense of urgency when my tumor was discovered. I see now that 1) I received excellent care, and 2) that the tumor had been there for a long time, which meant my sense of urgency was not necessarily something that should have driven my learning. YMMV. 

I wish you all the luck in the world,

Karen

 

[Newly Diagnosed]

Hi Karen

 

Sounds like you've been around the track several time – and from what I gather you're out of the valley now ?

Yes I can use all the information I can get and you've offered a treasury 

 

Quote

Cutting out a hunk of your lung is a really big deal. 

Well, the surgeon said I'd never notice it !  Like parts of the brain that aren't used.   I'd only notice if I were climbing a hill – but I'd still get to the top of the hill, etc.  I tried following up after the visit, to ask for an example more grounded in daily life.   The nurse repeated what the doctor said.  The lung fills up from the bottom.  The cancer is up at the top.  Wouldn't notice it.  Note, I'm an ordained Zen practitioner for whom awareness of breath is my anchor.  

To answer a question or two: I'm in San Francisco.  I was with CPMC but switched to UCSF for liver cancer surgery, 'cos of their renowned cancer department, and also 'cos it's a teaching college.
 

Quote

 You didn't mention where your oncologist is located--

Well, I don't have an oncologist !  

I phoned just this week to ask about this and was told to have an oncologist the oncologist must have a tissue sample.  

They said maybe the radiologist I see in a week and a half might refer me.

So far, my pulmonologist referred me to a surgeon and he said when he takes out the three segments they'll have the spot in hand and can biopsy it then, afterwards.
 

Quote

- perhaps within a cancer center involved in research? If so, a team would review your case and make a recommendation for treatment. Right now, it seems you are trying to coordinate this between physicians yourself, which seems like it would be very challenging. 

Yes it is challenging, and i have an appointment with Thoracic Cancer Social Worker there ( who I really like ) if only to vent so my aggravations don't get in the way of being the best patient with the best care givers.   One major issue is as you say – no team!  Instead, I asked the pulmonologist if he could refer me to a radiologist, and he said that might be viable.  

Maybe it's 'cos my primary care person is still with CPMC - and if I had followed thru on everything when changing over to UCSF for cancer care, then a UCSF general care person would be the one to keep track for me?    

Whatever team I've had seems to have been the Tumor Board, who said I looked like a candidate for surgery. 

I'll mention the deal to the department's social worker.

Meanwhile, my appointment with the radiologist is January 5.   I hope he accepts me as a candidate for CyberKnfe or suchlike.  ( Fingers x'd – and toes )

[Newly Diagnosed]

Rower Michelle – I checked.  Osher Center is all booked up thru May.  The doctor you shared is a founder.

I did see Pine Street Clinic however and found them amazingly helpful.