More confused than before

Joan M · 06-12-2008, 08:21 PM

I'm hoping your collective bc intelligence and support can help me sort out this puzzle.

I want to give you an update on the nodule that was diagnosed in the apex of my left lung in mid April, after I had a similar, small (9 mm) nodule removed last year in April from the same area of the lung via video-assisted thoracic surgery. Except for those two nodules, I've had no others outside the breast. I'm trying to figure out what to do about the new nodule and have been gathering information on sterotactic body radiotherapy and radiofreqency ablation and meeting with thoracic surgeons.

It was the RFA guy who first suggested that the new nodule is a local recurrance from last year's surgery, and then a thoracic surgeon, both of them at Sloan, agreed, and further suggested that the first nodule may have been lung cancer rather than a bc met.

Please give me your thoughts. I could use some insight into this problem which is weird.

I feel like I'm back to square one, or having a flash back to last year, when the first solitary pulmonary nodule was discovered and every surgeon and pulmonologist I consulted with thought it looked like lung cancer. Since I was a former fairly heavy smoker it was a consideration (I quit in 1993). The only surgeon I consulted with who thought it was probably a bc met is the same one from Sloan (she took an educated guess).

Since Sloan was not in my medical insurance last year (although they are this year) I had a core biopsy and then VATS at another hospital in the same area.

The biopsy showed adenocarcinoma -- problem is both non-small cell lung cancer and breast cancer are adenocarcinomas -- and a differential diagnosis could not be made based on the chemistries. A gross microscopic comparison with my original breast cancer slides favored a diagnosis of bc and the tumor was ER- and Her2+ like my original bc. However, even when the nodule was removed the surgical report still mentioned "favoring" a bc diagnosis.

A six-month Pet/Ct showed NED, but a one-year follow-up on April 15 showed another nodule right in the area of the wedge resection. Nothing else lit up.

The surgeon wants to get my original bc slides and lung nodule slides and have them examined in Sloan's lab. In the meantime I'll meet with an oncologist there, who I'd met with before when I had early stage bc and again last year when the first lung nodule was discovered, and then the two of them will discuss the case and the surgeon will let me know.

She said the scans look like classic local recurrence of lung cancer removed by a wedge resection because the patient couldn't withstand a lobectomy -- which is the standard treatment for lung cancer, as opposed to a wedge resection which is the standard treatment for lung mets. The surgeon also said that it's been a year and there are no other mets either in the lung or anywhere else. I've been on Herceptin but came off of it for three months in the fall because of a drop in my LVEF. My sense is that it's not all that uncommon for mets to hold steady or for a bc patient whose had mets to be NED for a while and I think since she's a thoracic surgeon, there's a bias there (that she can't help).

Afterward when I was absorbing all this information which I wasn't expecting, I googled it ("local recurrence" lung cancer margin), and it turns out that it's rather common in both stage 1 lung cancer and mets removed by wedge resection to get a local recurrence even if the margins are clean, and mine were clean. And one of the articles also said that the probability of a local recurrence raises when the margin is less than 1 cm as opposed to being greater than 1 cm, and my margin was 6 mm.

As for the RFA and SBRT, I would be a candidate for both of those procedures, meaning that there are not obstructions in the area of the nodule, etc.

I was hoping to have had this settled after my appointment but I guess that's not in the cards.

I really am bothered by all this uncertainty, which is how I felt last year.

Sheila · 06-13-2008, 06:35 AM

Joan
I can feel the exasperation . You want to know then get on with the treatment....you are in my thoughts and prayers that they will make a diagnosis, and you can get on with the correct treatment and back to a normal life...if there is such a thing for us!!!

SoCalGal · 06-13-2008, 08:15 AM

Hi Joan-
I have had many local recurrences along the center scar line of my mastectomy which were explained to me as "seeds" of a stray cell or two left behind. Both oncologist's consulted plus the surgeon felt that we should just remove them as a no brain-er surgery. When I was on herceptin for 20 months - no recurrences. When off Herceptin - recurrences. I was always devastated and disappointed and confused. AND kept asking shouldn't I be back on Herceptin. Everyone thought no. This was all 8 years after my initial diagnosis-lumpectomy-radiation and chemo. What I discovered then was that I was never going to fit into a proper protocol. It's been extremely frusterating and scary to always have to figure out what to do by seeing a variety of docs and then deciding. It would be nice to have a consensus once in awhile.

From what you write I can see that you are considering everything you need to consider. AND getting the top opinions to help you know what to do. I think it's all a process and you are in the middle. Once you've had these consults and get more feedback I think it will be clearer to you what to do.

If you cannot go back on Herceptin due to heart score - what about Tykerb? Just another thought.

I guess the thing to find out is - what are the treatment options for both lung and BC recurrence and can you do both or a combo that would best eliminate this crap once and for all?

Stay strong!
xoxo Flori

Joan M · 06-13-2008, 08:57 PM

I appreciate your thoughts and prayers. It is very frustrating and I'm hoping for some resolution in the next fews weeks. Flori, I've been back on Herceptin since January. I started it in May of last year after recovering from my lung surgery and took a break from October to January because of the drop in my LVEF. I was thinking that perhaps the nodule started to grow when I went off the Herceptin, as you were mentioning with your local recurrences. Also, I too was thinking about what kind of treatment I could get if the result is still some what indeterminate, a cross between a lung and breast cancer treatment. The thoracic surgeon said that sometimes there are nodules that just can't be fully diagnosed. I'll just have to be patient and wait for the results, and hopefully as Sheila mentioned, a correct diagnosis will be made.

Ceesun · 06-13-2008, 09:25 PM

Hi Joan, I am currently undergoing treatment for my lung nodule which came back in the same spot this past April. Since I was on herceptin only when it returned, my onc. is switching me to xeloda with tykerb. When I had my biopsy the docs all wanted to make sure it was bc and not lc, too. So they did comparisons with previous slides and found it was bc with her2 as before. I don't know if that helps at all especially if they can't quite confirm either way with the actual tissue samples. Seems this is a stubborn spot for me. My onc. favored chemo over surgery since he wanted to do chemo either way-surgery or not. Best Wishes, Ceesun

sassy · 06-14-2008, 07:46 AM

Joan,

Am I reading your post correctly, that your lung nodule tested ER- and HER2+, or does that refer only to your bc dx?

My question, can lung cancer be HER2+? and does it have a hormonal component? I assumed this was specific to breast cancer.

Lani · 06-14-2008, 09:26 AM

will get another chance to test the tissue for markers for which there are targetted therapies. Some lung cancers have EGFR and respond to Iressa (an oral tyrosine kinase inhibitor against EGFR just like tykerb is an oral tyrosine kinase inhibitor against EGFR and her2 (but doesn't work as well vs EGFR as vs her2)

Perhaps the specimen this time has changed or is more clearly one or the other.

One of the people writing and speaking about cutting-edge targetted lung cancer treatment at ASCO and in the literature is Dr. Roy Herbst of MD Anderson.

Try to put his name into PubMed (google Entrez PubMed) and see if something useful comes out.

It doesn't really matter what you call it "lung cancer" vs "breast cancer" it is what signalling pathways are driving the tumor ie, her2 vs EGFR vs others.

Perhaps the surgeon or pathologist will be willing to send it to Targeted Molecular Diagnostics (Robin P used them) for immunohistochemical staining to determine what targets are there to be "aimed" at.

Best of luck!

Joan M · 06-15-2008, 08:40 PM

Thank you for your replys and insight.

Ceesun, have you had mets any place else besides the lung? Did you have lung surgery to remove the first met or did it go away with systemic therapy?

Sassy, you have a good point about whether a lung nodule can be HER2+. I had also been wondering about that but never asked my onc (I do know that Herceptin was used in lung cancer trials and it failed miserably). Lani seems to have addressed the issue by discussing the different pathways.

Even though the nodule tested HER2 positive (immunostain), the biopsy as well as the surgery pathology reports favored a diagnosis of breast cancer based on the comparison with my original breast cancer slides. The biopsy report read: the tumor cells show immuoreactivity for CK7 and Her-2/neu (c-erb B2) (3+). They are negative for CK20, TTF-1, PE10, ER, PR and Brst-2.

The only difference between the biopsy and the surgery reports was that the surgical report tested positive for Brst-2.

My onc said that TTF-1 is a strong marker for lung cancer. From what I've read, some of the confusion may be related to CK7 testing positive and CK20 testing negative, as I think this is also consistent with lung cancer.

After the surgery, the tumor was also tested for EGFR. That was done by mistake. I had asked for a HER2 FISH test and instead EGFR was done. The results were positive, EGFR gene copy number = high polysomy; total nuclei counted = 60; FISH probes = EGFR CEP7.

When they finally got around to testing for HER2 with FISH, the results were: Interphase FISH results are consistent with HER2 amplification. Between 10 and 27 HER2 signals/cells were detected. These are abnormal and consistent with HER2 amplification.

Lani, You make a good point about RFA, and I've been shying away from that procedure anyway because the outcomes aren't that good. On the other hand, it's an alternative for someone who can't tolerate lung surgery and gives them an option. Thanks for the info about Dr. Herbst. I'm going to check into it.

Joan

Bill · 06-15-2008, 09:02 PM

Hi Joan, for what it's worth, and I hope you don't mind, maybe I should have asked first, but I took the liberty of calling a friend of mine yesterday (a surgical onc.) and explaining your dilemna, and forwarding your post to him. He's gonna look at it and weigh in on the subject. I hope you don't mind. I realize now that I really should have checked with you first. Sorry. Best wishes, Bill

Joan M · 06-15-2008, 09:17 PM

Hey Bill,

I don't mind. Thanks for thinking of me.

And Happy Father's Day! Hope you had a good one.

Best, Joan

Bill · 06-15-2008, 09:20 PM

Thanks, Joan. I had a really good one. I'll let you know what my friend's opinion is when he gets back to me in a day or so. Bill

Ceesun · 06-17-2008, 09:47 AM

Joan, The single lung met I had was completely resolved with chemo plus herceptin. I have only had that met so far and ?possible lymph node? in that area-both gone. Now that it has come back in the same spot, my onc. believes it grew again while on herceptin only. He does not favor surgery for me because I had surgery on that same lung years earlier for a non cancer issue..can you believe that! and developed a PE. Besides, he says now and back when the met first appeared, that he would do chemo whether I had surgery or not. He went to the tumor board again. The met was tested both times and he said it was an "extension" of the breast cancer and was her2. Hope that helps a little. Ceesun

Joan M · 06-17-2008, 01:04 PM

Ceesun,

Thanks for explaining. The chemo in combination with the Herceptin seemed to work great for you.

Joan

jones7676 · 06-17-2008, 02:18 PM

I totally understand what you are going through. When I developed a lung met, my oncologist felt it was lung cancer due to my history of smoking. However, upon that diagnosis, they did not have my original slides. I have a friend that works at the NIH and she had me send the lung biopsy slide as well as the original slides from my breast tumor. 4 or 5 people there looked at them and they all agreed that it was a breast cancer met. Chemo resolved the problem at that time....

Recently I've developed a second met in the other lung in addition to a "flare up" on the old one and I'm wondering......and scared. Who is right? Which is more reliable. Scientific tests or doctors? Are the tumors shaped differently? Should I try to have them removed? I'm afraid I might go through a removal procedure only to have them come back- which is the best approach?

I will be watching what you do and how it turns out very closely....as I'm personally very interested (I care about everyone else as well of course).

I hope you would send me a personal email if you should run across something very fabulous. It might save my life too.

I hope you get the answers you need and find a successful treatment. I'll be thinking of you and sending positive vibes your way.

Joan M · 06-18-2008, 05:18 PM

Hi Barb,

I know the feeling. This lung cancer/breast cancer thing is so confusing. That was really very nice of your friend to have your slides looked at by people at the NIH.

Let's keep in touch.

And, PS, love your flower photo.

Best, Joan

Ceesun · 06-18-2008, 07:10 PM

Hi Joan, Would you please keep me posted on the lung issue, too. Fondly, Ceesun

Joan M · 06-19-2008, 06:47 PM

Ceesun, I'll certainly let you know what's going on. Best, Joan