Nodules & Such

[katiek]

Good evening to all. My name is Katie and I live in Western North Carolina. I am guilty of having lurked around this forum, partly because I was so blasted angry with a diagnosis of lung cancer. You see, I am a 2-yr breast cancer survivor, and I can assure you that apart from the obvious difference, BC and NSCLC are worlds apart.

Some family background. In 1972 at the age of 45, my mother died from metastatic melanoma. I am the eldest of five and to date only my surviving sister has escaped a cancer diagnosis. Our youngest sister was diagnosed with an aggressive breast cancer at the age of 44, and she died just before her 50th birthday. The youngest of the family, my brother Val died from esophageal/gastric cancer within two months of diagnosis. My surviving brother is a melanoma survivor. At the risk of sounding pedantic, we take cancer very seriously in my family. (Our dad had heart disease)

My breast cancer was IDC, but it had not gone beyond the breast and unlike my sister's, it was not HER/2+. Christine was diagnosed in 2005 and no one talked about the BRCA variants back then, at least not around here. My tumor was tested, and apart from having some unknown variants it was presumed unlikely to return.

In January of this year, a X-Ray indicated either an infection or nodule in my left lung. After a course of antibiotics did not resolve my coughing I had a CT which indicated an "irregularly shaped mixed-density lesion measuring 26x11x15mm", as well as a nodule in the right lung that measured 11x11mm. The first concern of course was that it was metastases from the breast, so the first biopsy was taken from the larger tumor in the left lung which was stained to rule out BC, and diagnosed as NSCLC Adenocarcinoma.. My tumors present as "ground-glass opacities", a feature of which I am told means that there's a high probability of me developing more, so preservation of lung function is a priority. The smaller tumor in the right lung was also biopsied, and it's presumed to be identical in nature to that in the left. I've seen recent postings about biopsies not being done or even necessary when a lung tumor is smaller than 1cm, and I am not understanding that logic.

As for the PET scan, I had one after the initial biopsy, and here you have it: Low-level FDG accumulation in the region of the previously biopsied irregular left upper lobe nodule (SUVmax 2.31) is less than the blood pool activity. No significant focal FDG accumulation is identified elsewhere in either lung.

And here is the Impression: The irregular, biopsy-proven malignancy in the left upper lobe has low-level FDG accumulation. No FDG-avid adenopathy or FDG-avid extrathoracic metastases are identified, but given the relatively low FDG avidity of the primary lesion, this examination may be less sensitive for detection of metastatic disease. Additionally, the other known mixed density and ground glass lung nodules may not be well characterized by PET due to their morphology. Follow-up CT scans are recommended.

PET scans are not infallible! Had biopsies not be done, my cancer might not have even been found. And do you know what was said to me at the first Lung Cancer Conference which took place after the PET? The good news is that you don't have cancer anywhere else in your body! Which is simply untrue as none of the docs can tell that from my PET. Undoubtedly other PET results are clearer than mine, but if I hadn't turned to Dr. Google, I would have been blissfully (and in my opinion, ignorantly) unaware.

My treatment to date has been stereotactic radiation (Cyberknife) to each lung, which involved fiducial marker placement around each tumor, which was incredibly hard on both lungs. I don't know the grade or staging of my cancer because to completely remove the tumors would mean removal of those parts of the lungs, and the docs want to preserve my lungs' capacities. I understand the reasoning, but it feels like I'm in limbo, just waiting for the follow-up CT next month to see how the tumors responded to the radiation. My onco sent me to a thoracic oncologist at Duke who told me that the next step will be testing genetic testing of the biopsies; if they have any of the variants that can be targeted with less potent versions of the chemo or immunotherapies designed to treat Stage IV mets. Also, such testing could help us know if the tumor in the right spread from the left, or if they're both primaries.

I'm pretty much done, thanks for those who've hung in with me here. I will close by writing that I've made the decision to not undergo any more radiation treatments, altho I will take chemo, etc. This may sound radical and crazy but I've been researching medical cannabis treatment of cancer, and I believe that it's a viable option for me, legality aside.

Happy Fourth to all!
.

 

[Tom Galli]

Katiek,

Welcome here.

As you've indicated, a biopsy with a pathologist examination is the gold standard for lung cancer diagnosis.  I do know folks who've had 1 cm tumor needle biopsied and of this population many more experienced unsuccessful results.  A 1 cm tumor is a hard but not impossible target and I'm glad yours was successful.

CyberKnife saved my life so I have very high confidence in this procedure.  I also note that tumors in both lungs (Stage IV) are being treated and this is a new development in radio oncology. Just a short while ago, CyberKnife standard of care was restricted to one small tumor in one lung.  One of our members -- Judy M. -- wrote a blog about here two tumor SBRT treatment here.  Since this is a relatively new development in lung cancer treatment, you might consider writing a similar blog so that folks in the community can benefit from your experience.

Biomarker testing for those with adenocarcinoma is always a good idea. A percentage of those with adenocarcinoma have tumors that respond to targeted therapy and this therapy can be potent treatment.  

I would suggest adding this to your research on the effectiveness of curative cancer treatment with cannabis.  No doubt, cannabis is an effective means for dealing with late stage cancer pain relief, but I've not seen any literature on its effectiveness in treating metastatic cancer in medical journals.

I truly hope your CyberKnife treatment was as effective as mine.

Stay the course.

Tom

[katiek]

 

Thanks, Tom, and I'm happy that you're doing well. I didn't know about biomarker testing being a good idea for adenocarcinomas... once I got over the shock (more or less) of my diagnosis and started researching everything, I learned there were tumors with biomarkers that would respond to certain therapies. However, when I asked my onco (here in town, not the guy at Duke) about testing, his response what that insurance "won't pay for it unless it's Stage IV".

What I meant about breast cancer being different was the level of support one receives, vs that of the lung. I'm sure it's true for all of us, that well-intended (I think) friends and such always ask if you've ever been a smoker. Smokers are social pariahs these days, and the first assumption folks make is that you've been one. I feel extremely sorry for those with those among us who've never smoked! Millions are poured into breast cancer research- my estimate is that maybe half goes into lung cancer. Shoot- we don't even have a color, right? Breast of course is pink, prostate is yellow, kidney is orange... but what about our poor lungs?

Just an aside, but it further illustrates the difference between BC & LC. In mid-May I had my annual mammogram which was just after finishing the second round of cyberknife and right before my trip to Duke. Lo and behold, the radiologist saw something in my left breast near the lumpectomy area, and because it was unusual looking he deemed it necessary to have a biopsy done. To say I was stunned is an understatement- just the idea that anything could grown in what I call the Dead Zone (aka the nuked breast) floored me! But (and here's the point of all this) during the biopsy, in addition to the radiologist, there were 3 female nurses/MA's, and the role of one appeared to be that of moral support as she help my hand throughout the procedure. Afterwards I was given a cute little flat cold pack- pink of course- as well as a translucent pink bag containing a pink pen and pink sticky notes! Back to the lung- I was given nothing of the sort after either biopsies, and I can tell you that a biopsy of your breast is a piece of cake compared to one in your lung.

Just saying.

PS no surprises from the breast this time- just "fatty necroses". Lovely image.

[BridgetO]

Hi Kaie,

I'm also a survivor of breast cancer, as well as adenocarcinoma of the lung. I agree with you about the differences in the way those two cancers (and those who have them) are treated.  Makes no sense since lung cancer causes way more deaths than breast. I'm sure it's at least partly due to the stigma of lung cancer as a "smoker's disease" . It seems to me similar to the stigma of AIDs as a "gay man's disease."  I think we need to take a lesson from the AIDs/HIV community to raise awareness about LC (and maybe raise a little hell?) They did manage to mobilze funding that resulted in effective treatments that converted what wa once considered a death sentence into a treatable chronic disease. Just saying!

My insurance did pay for tumor genetics (biomarker testing) of my stage 1a LC, so I think this is worth pursuing. BTW, my tumor didn't light up on the PET scan either,which my pulmonologist said isn't unusual for small, slow-growing tumors.

Here's my personal opinion about cannabis and cancer.  Tom is right that there isn't any real scientific literature about the curative effect of cannabis on cancer. However,  it's important to ask why studies haven't been done. I think that it's in large part because of the irrational classification of cannabis as a Schedule 1 Controlled Substance. This maked it if not impossible, then unreasonably difficult, to do studies. Second, I think that big drug companies, the ones that can mobilize a lot of money for good controlled studies, hav little incentive to go through the hassle of asking for permission when they probably wouldn't make a lot of money off cannabis.

I live in Oregon, where we have legalized cannabis.  If my cancer returned or spread,  I probably would research what I could find in the "non-scientific" literature and consider using cannabis with curative intent.  I don't think there's much harm in it, other than driving under the influence. In your state I assume that legality is the big issue.

Best of luck,

Bridget

[Judy M.]

Hello Katie,
I'm the Judy M. that Tom mentioned above. I'm also a breast cancer survivor and can add my ditto to the difference in the moral support given breast cancer patients as opposed to lung cancer. And for me the breast cancer treatment was a piece of cake compared to lung cancer treatment. I also had S.B.R.T. on my 3 tumors. I had ( hope past tense is right) 1 in my left lung and 2 in my right, all small. You have actually informed me since the ones in my right lung originally presented as ground glass opacity. Had no idea this could mean future tumors waiting to pop up.
After the S.B.R.T., which is like Cyberknife but uses a different machine and doesn't require fiducial placement, my Oncologist wanted me to have 4 rounds of Cisplatin/Alimta chemo. Am between my 2nd and 3rd round right now. Won't have scans until the end of treatment so, as usual, more waiting. Cancer treatment is great for developing the virtue of patience. Needless to say I'll be following your treatment closely since so far you and I are the only ones on the forum that I know of to have multiple tumors treated with S.B.R.T. Though since it has recently come into standard of care I expect to see more soon. I'd be interested to know the specifics of your S.B.R.T. treatment if you know them or could get them from your radiologist. Mine are in the article on my blog. As in how many fractions, grays, etc. Hope you do well. I count myself blessed to have had the opportunity to be treated with S.B.R.T.
Judy M.

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[Pearl]

By the way the color ribbon for lung cancer is Pearl which I found ironic seeing how my name was Pearl and I just found out I may have LC


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[Judy M.]

Thank you, Pearl. Others may have known that, but I didn't.

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[katiek]

Yes, thank you Pearl.

[katiek]

On 7/4/2017 at 5:08 PM, Judy M. said:

Hello Katie,
I'm the Judy M. that Tom mentioned above. I'm also a breast cancer survivor and can add my ditto to the difference in the moral support given breast cancer patients as opposed to lung cancer. And for me the breast cancer treatment was a piece of cake compared to lung cancer treatment. I also had S.B.R.T. on my 3 tumors. I had ( hope past tense is right) 1 in my left lung and 2 in my right, all small. You have actually informed me since the ones in my right lung originally presented as ground glass opacity. Had no idea this could mean future tumors waiting to pop up.
After the S.B.R.T., which is like Cyberknife but uses a different machine and doesn't require fiducial placement, my Oncologist wanted me to have 4 rounds of Cisplatin/Alimta chemo. Am between my 2nd and 3rd round right now. Won't have scans until the end of treatment so, as usual, more waiting. Cancer treatment is great for developing the virtue of patience. Needless to say I'll be following your treatment closely since so far you and I are the only ones on the forum that I know of to have multiple tumors treated with S.B.R.T. Though since it has recently come into standard of care I expect to see more soon. I'd be interested to know the specifics of your S.B.R.T. treatment if you know them or could get them from your radiologist. Mine are in the article on my blog. As in how many fractions, grays, etc. Hope you do well. I count myself blessed to have had the opportunity to be treated with S.B.R.T.
Judy M.

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Hi Judy- I've no idea about the radiation dose but I'll find out. Interesting that you were diagnosed Stage IV at the onset because of tumors in each lung, and obviously yours weren't removed, either. Dr Stinchcombe at Duke said there's no way to know about mine w/o biomarker testing, and everything I've read on this forum is readying me to insist that mine be done. Now.

i may have used the wrong term for Cyberknife, believing it interchangeable with sbrt. I like the idea of no fiducials, my lungs can't handle their placement again.

katie

[Judy M.]

Katie
As far as I know, you were right about Cyberknife. That's the machine that uses fiducials to track your tumors to do S.B.R.T. ok them. My S.B.R.T. was done with the Varian Trubeam machine which uses C.T. to track the tumors during treatment.
From what I know genetic testing of your tumors is great because it reveals what targeted therapy or immunotherapy drugs you might qualify for. One tumor in each of my lungs was biopsied, so I know each was adenocarcinoma. They were tested for 3 different markers for targeted therapy and negative for all three. Weren't tested for immunotherapy markers. Looks like someone dropped the ball or maybe the samples were too small? There were 2 of them but since my tumors were small thinking the samples may also have been. For whatever reason Oncologist says if testing for immunotherapy biomarkers is done it will be after they do another biopsy. Hoping that doesn't happen because that would mean (a.) I still have one if my original tumors after S.B.R.T. and chemo, or (b.) Another tumor has popped up somewhere. Obviously, I'm praying neither of those scenarios occur. We're your tumors biopsied before you had the Cyberknife treatment? If not I hope the Cyberknife fried the little devils to death and there's nothing left to biopsy.
Just M.

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[Judy M.]

I just reread your original post and your tumors were biopsied which means you should have samples to test for biomarkers. A good thing. Have you received your results yet? Hope you qualify for one of the newer drugs. Easier on you and more effective than chemo from what I know. Right now I'm doing the chemo thing. I'd definitely have S.B.R.T. again. Mine was very easy without having to have the fiducials. Haven't had that experience. Chemo has been much harder than either standard radiation ( which I had for the breast cancer) or S.B.R.T.
Just M.

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[katiek]

Hi Judy! Our stories certainly are similar! I've not yet had the testing... I have a 3-month follow up CT August 8, and meet with the radiologist and onco the following day. On August 24 i'll see my thoracic onco at Duke, and I suppose the testing will be next. I'm curious- when you were diagnosed Stage IV, was it because of tumors in both lungs? When I met with Dr. Stinchcombe at Duke, he said that without testing it was impossible to determine if my cancer was Stage I (as I was told by the docs here) or Stage IV. Is the smaller tumor in my right lung a metastases from the larger in the left,  or is it say, small-cell? In writing you now I realize that I need to demand the testing regardless of the CT results.

I'm attaching the notes with drawing that my Duke onco made for me in case you're interested. On p2 he made a diagram of the alterations that can be treated with the targeted chemo, and one of them is PD-L which is treated with immunotherapy. I wonder why your tumors weren't sampled for it, too? You may recall me mentioning that my local onco basically poo-pooed the testing when I asked him about it in May. The only thing they know about the rt lung tumor is that it's also an adenocarcinoma, so they're (the local docs)assuming it's the same as in the left. I'm not very happy with them, and ever so thankful that I have the onco at Duke now. The biggest problem with him is that Duke is about a 4-5 hour drive from here. However, considering what many cancer patients have to go through travel-wise, I really have no reason to complain.

I hope the chemo isn't taking too big a toll on you. As I mentioned before, I'm taking CBD oil daily, plus I've started on the RSO (Rick Simpson Oil), which is concentrated THC. I have to be careful with the latter- dosing is difficult as it's a viscous oil which I dab onto pieces of bread, hardly a precise delivery method. Still, I believe in it and will continue medical cannabis treatment, regardless of the results of my CT or the testing. Oh, to live in a state where medical cannabis is legal! And I'm someone who dismissed it as merely a way for potheads to indulge their habit legally... I had no idea, until the lung cancer diagnosis.

Stinchcombe notes p1.pdf

Stinchcombe notes p2.pdf