Seems stages, just as statistics, are pliable too

[LilyMir]

So I thankfully finally saw my oncologist, months after diagnosis and many weeks after surgery. I was relieved she was personable, quite positive, still talked about curative intent and (correctly) pointed out that statistics are useful for group analysis, not individuals.

Turns out I am EGFR positive, which my oncologist seemed to think is a good thing (if there is anything good about lung cancer!). I will be put on chemo for 4 cycles then 3 years of targeted therapy. She also arranged for me to consult with radiation oncology in case they want radiation in between chemo and targeted therapy.

Not sure I am keen on radiation but they seem to want to evaluate if it should be used given that my one cancerous lymph node was starting to branch out beyond its capsule and they seem to want to be as aggressive as possible treating. Anyone has experience with this?

One thing that became evident to me is that staging, just as survival statistics as I wrote on the blog, is pliable too. As per the previous guidelines, I would have been staged 3a but the new ones staged me at 3b. I am curious what the even newer guidelines (in the making) would have for changes. I read that the 6th to7th version guideline changes meant 25% of patients were restaged. Something to think about when freaking out about our stage label.

Hoping for the best.

[Tom Galli]

Lily,

I’ll strike a military analogy to speak to radiation and it’s impact compared to systemic methods (conventional chemo, targeted therapy and immunotherapy). Radiation is a killing machine. It is sure to hit the target and sure to kill what it hits. It is superb for point specific problems.

Of course with your lymph node involvement, there are likely cancer cells in your blood and lymphatic systems.  Your chemo, and conventional chemo does a good job killing cells, is then needed to ensure these cells are eliminated.  I see nothing wrong with a combined approach. My view, reducing tumor burden is always a good idea. 

In the long run, staging doesn’t matter. It is an indicator that suggests treatment modalities. It doesn’t really speak to outcomes. A lot of us progress.  Many of us have recurrence. But, many more of us survive to tell our survival story. I pray you are among the many more.

Stay the course. 

Tom

[LilyMir]

Thanks Tom, I hear you! I think my concern is that with the node resected (I was told my surgeon is really one of kind, who went so close to the nerve during resection that his assistants commented they never saw that nerve so close), I am not sure what they will be zapping. I am indeed so worried some nasty cells escaped but wonder what will they be irradiating with the node cleaned out along with 8 other nodes that tested negative.

I am sure they know better than me and I will go consult with radiation oncology as was recommended. I just heard a lot how tough radiation can be and already feeling scared of chemo so adding radiation sounded doubly scary to me today. I will stay the course!

[Tom Galli]

Lily,

There are many types of radiation. I had fractional radiation for 30 days and that was a slug. I also had precision radiation for 15 minutes a day for 3 days. That was a piece of cake. Both worked. 

Stay the course. 

Tom

[RJN]

Hi Lily,

I also had radiation - both conventional and SBRT. I was very sceptical, but ALL my oncologists (I have 3 due to being on a trial) we’re 100% convinced it would help my long-term outcome, so I went for it. It IS a slog, especially conventional as it is daily, but could make a huge difference to your risk of recurrence (according to a fairly deep field of studies).

Re the staging, it is interesting. I suppose in the US it doesn’t matter, but here in the UK it is really important as it dictates what  treatment you are offered by the NHS. E.g. currently stage 4 are not candidates for surgery or radiotherapy. My trial has been set up by oncologists to change this.

Good luck with the next steps, Rikke

[Pstar]

LilyMir,

I had 30 days radiation. It was Mon thru Fri with weekends off. I was very nervous about it but the only side effect was slight heartburn and about halfway thru I had some difficulty swallowing. I was prescribed BMX solution to numb the throat for a short time which helped.  With the chemo, I was on carboplatin and etoposide ( 4 rounds with 3 straight days and 21 days between). The only side effect I had was my hair started to fall out so I shaved my head( growing back now). I finished radiation and chemo the beginning of Feb and my CT scan in March showed that nodule and lymph node had shrunk. I have another CT scan coming up the beginning of June. Stay strong and I am praying for you.

[Cornelia]

Hi Every one, tomorrow I go for my Radiation Therapy Consult and then see my Oncologist for the first time this Tuesday, May 24th. As I said I am a stage 3B with a lung mass and a mediastinal lymph node involved and they say for that reason I can't have surgery - which I don't quite understand. I am wondering at this point if I should get a second opinion; and also before I start any treatment should I go to Boston or Sloane Kettering to see what they say? I live in the Albany, NY area. Has anyone else been through this? I just want to get started with treatment as soon as possible but is it worth the trip to go to these hospitals that specialize in all thing lungs?? It's been over 6 weeks since I was diagnosed and I am afraid time is wasting away. 

[LilyMir]

Hi Cornelia, I had what was measured as 2.7cm single nodule in my upper left lobe on CT. PET was avid in same nodule, same size, but also in one mediastinal node but only a tiny bit. I got lobectomy and they removed 9 nodes, only that same one was positive as expected. Lobe margins were clean. The tumour was much larger than imaging indicated though and node was 90% cancerous too.

I would ask a lot of questions why you are not a candidate for surgery. Do they have a reason (e.g., location, size, more nodes involved?). Six weeks since diagnosis is a long time to only be now seeing oncologists for the first time, if you did not have surgery. I would push for more prompt treatment. MSK is a top centre.  A second opinion seems like a good idea to me.

[hillham]

Cornelia, I was diagnosed 3b too, with what sounds like the same diagnosis as you. I got opinions at NYU Langone, Columbia and MSK, all in Manhattan. Everyone agreed that surgery wasn't an option and that a good plan for me was chemo and radiation. That was a year ago, and so far it's been successful. Second opinions are always good. Good luck to you! 

[Judy M2]

Cornelia, I was dx'ed in October 2019 at Stage IIIB and was not a candidate for surgery. I had chemo and radiation and am now on a targeted therapy for my EGFR mutation. NED since April 2021. Best of luck to you. 

[Cornelia]

Thank you for all your responses. My Oncologist says I am a 3A; my Radiology Therapy Dr says 2B...I think the problem lies with the mediastinal lymph node and where it is located - right in the middle of the 2 lungs it seems. Anyway, I go for chemo and radiation starting June 6. Radiation 7 days a week and Chemo 1 day. Will also be seeing a surgeon June 8 to see what he has to say - I was surprised since my Pulmonary Dr said no surgery. Should be interesting to say the least...if I can have surgery, I am leaning towards that ... I don't know if that is the better choice or not. They would be doing a lobectomy of the right lower lobe.  It's hard to stop thinking about all of this and I am trying to keep a positive attitude; otherwise, I am doing everything I normally do and hope to keep that up even with the treatments. Hearing from others in this group are a big lift for me. Have a great Memorial Day weekend!!!!

[Tom Galli]

Cornelia,

You will be on the same first-line treatment path that I experienced in February 2004--chemoradiation and after evaluation for possible surgery. In my case, I had surgery but also experienced a recurrence (actually 4) after. That is indeed the challenge with lung cancer. It recurs frequently after treatment that is designed to eliminate it.

Stage III treatment plans are always tough to develop. Mets in mediastinal lymph nodes introduce treatment uncertainties. There is no treatment plan set in stone for Stage III disease so it is best to ensure you are receiving input from a thoracic surgeon, medical oncologist and radiation oncologist. Some get these connections through what is called a hospital "tumor board". I prefer to find a specialist myself and seek out an individual opinion. I personally think that collective decisions on any matter often have a bias towards the "least common dominator" solution. But, that is my opinion. Is it worth "the trip to go to these hospitals that specialize in all thing lungs?" If you have the resources, then yes. These specialist hospitals often have the latest medical technology and best trained doctors to deal with sophisticated disease. Perhaps the best suggestion I can offer is to attend the specialist hospitals to the point of development of a treatment plan, then have that plan executed at a local clinic close to your home. 

It is hard to stop thinking about all of this. It is even harder to maintain a positive attitude. These conditions attach to any significant disease. There is however small comfort in reading insight in our forum. You'll find a number of us have been hanging around for years despite late stage diagnosis and multiple recurrences. We had to prevail to be here to relay our collective message of hope--if we can live, so can you.

Stay the course.

Tom

[Judy M2]

Cornelia, all I can add to Tom's comment is to try to get a palliative care doctor on your team before you start chemo and radiation. I wish I had done that. Radiation gave me a wicked case of esophagitis due to the location of lymph nodes that were treated. Palliative care can help minimize any pain or nausea you might experience. The good news is that both chemo and radiation are very effective. Hoping all goes well for you.