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Questions from new metastatic diagnosis

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nslay View Drop Down
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    Posted: Apr 29 2017 at 10:21pm
I was diagnosed with stage III triple negative bc May 2, 2015 and was treated w/chemo, then surgery, then radiation. Chemo reduced the stage down to stage I size with death of all the cancer tissue in the 1 effected lymph node, per the post-mastectomy pathology report. I finished radiation tx Feb of 2016.

5 months after radiation, I was diagnosed with pneumonitis secondary to radiation and then treated. I underwent a few CT scans during this process with a follow up scan in early Oct 2016 and then a recent scan in March 2017.

2 weeks ago, my pulmonologist told me there was a 2 cm x 1.5 cm mass on my new CT scan and that I needed a needle biopsy. Realizing that this mass had grown from invisible, in October, to this size in March was a fast rate of growth, I've been expecting bad news from the biopsy which took place 3 days ago. Post-biopsy, due to the complication of a lung collapse I spent the last 3 days in the hospital and this morning the hospitalist told me the results of the biopsy. I'll see my oncologist in 3 days.

The hospitalist told me the report indicated that they could not determine where the cancer had originated, but that they would be doing further pathology testing including DNA and then might have more information. Based on my medical hx, the assumption is that this is a metastasis of the breast cancer.   This brings me to my questions:

I'm hoping that by the time I see my oncologist in a few days, that all of the pathology tests will have been completed. I understand, from my reading, that when bc metastasizes it changes. I would assume this means that this new mass may no longer be triple-negative. If this is the case, is the new treatment based solely on the characteristics of the new mass or is the fact that it originated with triple negative bc a consideration in what treatments to use? (if it did originate from the bc).

Do any of you have specific information about treatment for metastasis specifically located in the lungs? Does it ever involve surgery or is it only chemotherapy?

I realize that some of these questions may be answered by my oncologist on Tuesday, but I feel that the more information I have, going into that appointment, will help me to better participate in discussion with my oncologist.

Also, BC.org mentioned that it is a good idea to consider getting a second opinion regarding treatment. Do any of you have feedback regarding this? Did you get a second opinion? What do you see as the pros and cons?

In addition, do you think I should be on the lookout for clinical trials?

Thank you for any information you may be able to share with me.
Nancy
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nslay View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nslay Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2017 at 11:10pm
One more question: I see people talking about tumor size in both cm and mm. Which one is standard? I don't know whether my current tumor is 2 cm or mm, but I think cm.
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gordon15 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 30 2017 at 6:53pm
nslay: I am going to paste in your remarks in <...>


<5 months after radiation, I was diagnosed with pneumonitis secondary to radiation and then treated.>

I'm not sure what this is, but my wife has an "opacity",which on her latest PET scan shows  lung damage in the right upper/outer lobe, where the radiologist/oncologist  told her that she needed radiation to the clavicle area, to irradiate the lymph nodes under the clavicle, on the side where she had tumor/lymph nodes (4)involved, she has had some shortness of breath,  it was really noticeable after her radiation, but it has subsided, and it is no longer affecting her breathing, but her latest PET scan shows this damage, if you want to call it that, it says there is an "opacity" due to (radiation) therapy.

< I understand, from my reading, that when bc metastasizes it changes. I would assume this means that this new mass may no longer be triple-negative.>

From everything I have read, Triple Negative BreastCancer does not become non-Triple Negative if it metastasizes, but I am not a doctor or pathologist, surely there are people above my pay-grade on this forum to correct me...I think I read one or two clinical trial summaries, where TNBC migrated to non-TNBC, but I'm not an expert on metastasis to another area of the body, if that becomes "non" TNBC and could be treated differently...


<Do any of you have specific information about treatment for metastasis specifically located in the lungs? Does it ever involve surgery or is it only chemotherapy? >

From what I know, TNBC metastasis "symptoms" to the lungs is indicated by a persistent cough, the PET scan will show lesions , my wife has what is called a "ground-glass" nodule(benign) in her lungs and her latest PET scan showed no enlargement of that lesion, or FDG uptake (the PET scan will show what is called an "FDG uptake,it measures via glucose injection that measures some hyper-metabolic cellular activity, which "might" indicate possible cancer cell activity) , from everything I have read, surgery is not the first course of therapy for metastasis to the lungs, my wife's oncologist  has told us that the researchers are working hard on a chemotherapy for TNBC that has gone to the lungs... the last time I talked to him, he said "Keytruda" was very effective against melanoma, but it was not effective in trials for lung cancer, but the researchers are working day and night on this issue.He referred my wife to UCSanDiego/Morres Cancer Center, where they did some genetic tests, to advance their research at this point....

<good idea to consider getting a second opinion regarding treatment. >

This is always a good idea, if time permits, insurance and money are issues, my wife's oncologist is Dr. James Sinclair, in La Jolla, Ca ,Scripps network, since he is trying to keep my wife's condition from going to Stage 4, I can say we have faith in him, my wife is "stable" at this point in time... G 





Edited by gordon15 - Apr 30 2017 at 7:10pm
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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