Need Info on Lung Mets

alabama_survivor

I am in south central Alabama, and in this part of the country, it is quite common for folks to develop small nodules in their lungs, and they are normally caused by something in the soil.  When those nodules showed up on my PET scan when I was first diagnosed with Stage 3C Triple Negative Breast Cancer, my oncologist didn't want to write it off as nothing.  The nodules were too small to biopsy, and he made the decision to move forward as if they were not cancer, because he didn't want to delay treatment for the breast cancer while he investigated the lung issues.  That was the first of July.  The middle of December I had another CT and the nodule were smaller, almost gone, leading the oncologist to believe they were probably cancer since they had all but disappered.  Last week I had another CT and got the results today.  The nodules are now larger then they were in July, but still too small to biopsy.  The oncologist feels like the risks involved in wedge resections outweigh the benefits.  If they keep growing, they may be large enough to biopsy in a couple of months.  So, he wants me to have a PET scan in August.  He did tell me that he has believed from the beginning that it was probably a cancer spread from the breast.

Anyone have any experience with lung mets?  What can I expect?

GlowMore

No experience...

Hey Alabama.  I have no experience YET with Lung Mets....and know this is not good news.  Why would this Oncologist want you to wait until August 2015 to get a PET?  I would get a 2nd Opinion immediately if it were me.   Do you have insurance?   I have had several PET Scans and they do take up most of your day....however....they are worth it.  This is your LIFE ***  Please know we send you Prayers for Courage and Strength and Hope.

 

New Flower

GlowMore said:

No experience...

Hey Alabama.  I have no experience YET with Lung Mets....and know this is not good news.  Why would this Oncologist want you to wait until August 2015 to get a PET?  I would get a 2nd Opinion immediately if it were me.   Do you have insurance?   I have had several PET Scans and they do take up most of your day....however....they are worth it.  This is your LIFE ***  Please know we send you Prayers for Courage and Strength and Hope.

 

I agree with Glow

Please request PE/CT earlier than August. Your oncologist propably does not want to do another scan too soon, however 6-8 weeks from the previous one is considered a reasonable break. Sometime Biopcy is not required to confirm or rule out cancer, if it s in difficult spot. your blood work and symptoms like cough could be an indicator too.

i hope your noudles are benign, however if not mild form of Chemo will be recommended. There several oral and IV forms to treat mets. Please keep your port in if you have not taken it out yet.

Keep us posted    

alabama_survivor

New Flower said:

I agree with Glow

Please request PE/CT earlier than August. Your oncologist propably does not want to do another scan too soon, however 6-8 weeks from the previous one is considered a reasonable break. Sometime Biopcy is not required to confirm or rule out cancer, if it s in difficult spot. your blood work and symptoms like cough could be an indicator too.

i hope your noudles are benign, however if not mild form of Chemo will be recommended. There several oral and IV forms to treat mets. Please keep your port in if you have not taken it out yet.

Keep us posted    

My oncologist has been on top

My oncologist has been on top of this since day 1.  He says that while they have grown, they are still so small that it would be impossible to stick a needle in them.  2 other doctors have also been in the loop.  As I said, they were there, they shrunk during chemo, then they got bigger.  The oncologist wants to be able to do a biopsy without having to do major lung surgery.  The idea of waiting on the pet is to see how much more they will change, and if they are cancer, getting them large enough to be able to do a biopsy.  Living in the south, most doctors would simply watch these nodules, as 90% of them are harmless, but because of the advance breast cancer and the positive nodes in the center of my chest that they were unable to remove surgically, he does believe they are cancer.  They need the biopsy to find out what kind of cancer so they will know how to treat it.  I fully understand the situation and his reasoning, and I've done a lot of research.  I'm just wondering about treatment and prognosis.  When ever I've asked him about prognosis, he told me he was hesitant to say until he found out what these nodules were. 

I understand that if it spread from the breast, it would still be considered breast cancer, even though it was in the lung, and it would be treated as breast cancer.  I did wonder if I would be treated with the same meds I had before:  A/C and Taxol.

 

New Flower

alabama_survivor said:

My oncologist has been on top

My oncologist has been on top of this since day 1.  He says that while they have grown, they are still so small that it would be impossible to stick a needle in them.  2 other doctors have also been in the loop.  As I said, they were there, they shrunk during chemo, then they got bigger.  The oncologist wants to be able to do a biopsy without having to do major lung surgery.  The idea of waiting on the pet is to see how much more they will change, and if they are cancer, getting them large enough to be able to do a biopsy.  Living in the south, most doctors would simply watch these nodules, as 90% of them are harmless, but because of the advance breast cancer and the positive nodes in the center of my chest that they were unable to remove surgically, he does believe they are cancer.  They need the biopsy to find out what kind of cancer so they will know how to treat it.  I fully understand the situation and his reasoning, and I've done a lot of research.  I'm just wondering about treatment and prognosis.  When ever I've asked him about prognosis, he told me he was hesitant to say until he found out what these nodules were. 

I understand that if it spread from the breast, it would still be considered breast cancer, even though it was in the lung, and it would be treated as breast cancer.  I did wonder if I would be treated with the same meds I had before:  A/C and Taxol.

 

Hi again

If cancer most likely it should be treated with different type of Chemo. There are more variety of chemo drugs available for stage 4 breast cancer. Some of them easy to tolerate some more harsh. Since your noodles responded well to your previous treatment your doctor might decide to continue. 

Keep us posted

alabama_survivor

New Flower said:

Hi again

If cancer most likely it should be treated with different type of Chemo. There are more variety of chemo drugs available for stage 4 breast cancer. Some of them easy to tolerate some more harsh. Since your noodles responded well to your previous treatment your doctor might decide to continue. 

Keep us posted

Thanks.  I've done quite a

Thanks.  I've done quite a bit of research.  The first time, I had 4 bi-weekly dose dense A/C treatments, followed by 12 weekly Taxol.  I did have some side effects:  Low blood counts, extreme fatigue, and generally just not feeling good.  With the Taxol, it was more of the same, along with neuropathy (This feeling that my feet are wrapped up in something, even when I'm barefoot, and they are super tender if I step on a crumb or something.  Occassional tingling in my hands, feet, and even my ankles, but so far no pins and needles), a lot of fingernail darkening and tenderness, and they lifted from the nail beds, but I never lost any.  I also got the blister-like rash on my forearms and hands, and at one time my whole body was itching.  I had a lot of weeks when I really had a hard time making myself do anything.  My brother and sister both have cancer, and I've seen through both of them that my side effects could have been a lot worse.  I will certainly do it again if I have to. 

VickiSam

alabama_survivor said:

Thanks.  I've done quite a

Thanks.  I've done quite a bit of research.  The first time, I had 4 bi-weekly dose dense A/C treatments, followed by 12 weekly Taxol.  I did have some side effects:  Low blood counts, extreme fatigue, and generally just not feeling good.  With the Taxol, it was more of the same, along with neuropathy (This feeling that my feet are wrapped up in something, even when I'm barefoot, and they are super tender if I step on a crumb or something.  Occassional tingling in my hands, feet, and even my ankles, but so far no pins and needles), a lot of fingernail darkening and tenderness, and they lifted from the nail beds, but I never lost any.  I also got the blister-like rash on my forearms and hands, and at one time my whole body was itching.  I had a lot of weeks when I really had a hard time making myself do anything.  My brother and sister both have cancer, and I've seen through both of them that my side effects could have been a lot worse.  I will certainly do it again if I have to. 

Sending positive thoughts, and prayers your

way ...  Thinking about you ... 

 

Vicki Sam

alabama_survivor

Today I saw the breast

Today I saw the breast surgeon for a followup visit.  I told the nurse about the CT and she made she he had a copy and reviewed it.  I asked him what his thoughts were, and he said that he agrees with the oncologist.  He thinks I have metastatic disease.  He did say that now days there are so many new drugs that metastatic disease is treated like a chronic disease rather than a terminal one.  He said that if the it becomes apparent that the nodules are multiplying but can't be biopsied, they will go ahead and treat them, but they like to have a biopsy first, because sometimes the mets can develop different different characteristics than the primary cancer.

New Flower

alabama_survivor said:

Today I saw the breast

Today I saw the breast surgeon for a followup visit.  I told the nurse about the CT and she made she he had a copy and reviewed it.  I asked him what his thoughts were, and he said that he agrees with the oncologist.  He thinks I have metastatic disease.  He did say that now days there are so many new drugs that metastatic disease is treated like a chronic disease rather than a terminal one.  He said that if the it becomes apparent that the nodules are multiplying but can't be biopsied, they will go ahead and treat them, but they like to have a biopsy first, because sometimes the mets can develop different different characteristics than the primary cancer.

Lets hope

Lets hope, it is not cancer. However if it is it will be treated. Most likely you will not have A/C for it. If you still have your post, Please keep your port and flash it every 4-6 weeks at your Chemo clinic. Try to forget about it until August, however if you become symptomatic, contact your doctor. Keep us posted . we do care

RozHopkins

Been following your thread.

Been following your thread.  Sounds like the horrible waiting game for a while which is not pleasant.  So want you to know I am thinking about you, please tell us what happens and good luck to you.

alabama_survivor

New Flower said:

Lets hope

Lets hope, it is not cancer. However if it is it will be treated. Most likely you will not have A/C for it. If you still have your post, Please keep your port and flash it every 4-6 weeks at your Chemo clinic. Try to forget about it until August, however if you become symptomatic, contact your doctor. Keep us posted . we do care

My port was removed when I

My port was removed when I had my mastectomy.  I was actually encouraged by that.  I would have thought that if they suspected mets, they would have left it in.  When I saw the surgeon, he said that if I need it, he will put another one in and this time they will leave it in.  I am hopeful, but I really am expecting the PET scan to show mets.  Thanks for replying.  I didn't really start getting on here until treatment was nearly complete, and I am realizing that I may be starting over again.

alabama_survivor

RozHopkins said:

Been following your thread.

Been following your thread.  Sounds like the horrible waiting game for a while which is not pleasant.  So want you to know I am thinking about you, please tell us what happens and good luck to you.

Thanks so much, Roz.  The

Thanks so much, Roz.  The waiting is hard, but I am realizing that life is probably going to be lived from one scan to the next, and one treatment to the next.  Unfortunately, I know a lot of people who live that way.  Thanks so much for your thoughts.

MrsBob

i do

Hi!

I had lung mets in 2013. (I was told then it was pea sized with "wierd webbing" all thru my upper lungs. I was being treated for asthma before I insisted on getting a scan). I took chemo pills for a couple months and they remained the same as did my lesion on my T9 of my spine and the speck on my iliac (hip) bone. Then i was switched to Arimidex and Xgeva shot and the lung cancer was completely gone and the lesions dormant. Ive been on Arimidex for 2 years and just had a routine scan and it showed a 7mm spot in my lower lung. Too small to biopsy so we wait until either markers go up or my next scan which is in Sept. My Onc doesn't think its cancerous looking and that it could be gone by the next scan. I also had a wierd fuzzy line in there. (my Onc mentioned the original one in 2013 was not pea sized but quarter sized! big difference! Not sure why i heard pea sized but makes no difference now.)

Waiting is so hard and stressful. Feel free to message me anytime, sounds like we have alot in common unfortunately.

Missy