mets to lung
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It looks like I have mets to the left lung. The doctor said, "lots of tiny little tumors on the lining of the left lung". Did someone in this group say they had something like hundreds of tiny tumors?
I just had my cat scan. It started with pleural effusion which was drained, but keeps coming back. I am in shock, I think.
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It looks like I have mets to the left lung. The doctor said, "lots of tiny little tumors on the lining of the left lung". Did someone in this group say they had something like hundreds of tiny tumors?
I just had my cat scan. It started with pleural effusion which was drained, but keeps coming back. I am in shock, I think.
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It was me, and yes, I have too many to count tumours in all lung lobes, with them grouping on the outer edges (lining) of each lobe and the bases of my lungs more than just in the middle. They are the size of pinheads, except for two, which are the only measurable ones at 0.8cm and 0.7cm in diameter.
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Adverb, sorry to hear of the progression, it's always a very frightening time. After pleural effusions failed 4 times I had the talc plurodosis which worked beautifully and have felt great for months now, completely clear. The very best of luck. Love Gail
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Welcome Europa - hang in there and I hope your funk lifts soon!
Welcome Brenda too, sorry you both have to be here - I also have "multiple" mets in both my lungs, in all the nodes; 2 that are bigger (still under 1cm) and many between 3mm and 9mm. I don't know how many, but I'm still asymptomatic and they don't seem to be interfering with my lung function, for which I'm so grateful.
Justagirl, sounds like we have pretty much the same thing going on in our lungs?
Just packing and getting ready to leave for Israel, to spend some time with my son, and I'm so excited - think this vacation will do me more good than any medicine!
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Hello everyone.
Hope you have a great time in Isreal Carolben!
Welcome Adnerb, you sound much like me, I have had 3 drains of my pleural effusion with quite a bit of liquid still left. I am now trying to decide whether to have a pluraldesis (sp), or to have drains put in.
Gail/Australia what was entailed in getting a pleuradesis? Was it painful? I had heard it entails a few days in the hospital. I hate hospital stays.
I have scans coming up on Sept. 24th to see if the Faslodex is working. Im getting nervous. I think that Xeloda or chemo will be my next move if Faslodex doesnt work.
Hope everyone else is doing well.
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Anyone here who lost all lung mets and is still alive and well?
How long do I have in this cruel world?
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Adnerb, were you just diagnosed Stage IV? If so, you had several years since you had a recurrence. (I am not sure if I got the terminology right. You had a recurrence or a secondary primary and now you have mets?) . What helped me, when I had mets, and it took me about 6 months to calm down enough to do this, was to tell myself, "You're not going to die tomorrow."
As these other fine ladies have said and I'll chime in too, you can have lots of lung tumors and still be able to function pretty well. I actually have pain from my tumors which seems to be rare and shortness of breath but I can run. Within 3 months of my first treatment, Aromasin, my pleural effusions resolved and my lung tumors shrank significantly. I didn't lose my lung mets, unfortunately. I couldn't tolerate Aromasin. But there are drugs that have brought women to NED (no evidence of disease) who had lung mets. I'm hoping you will be one of them.
CarolBen, hope you and your son have many joyful moments together? How long is your travel time?
Europa, I had progression on Faslodex, and now after 6 weeks on Tamox I have skin metastases. I'm consulting with my oncs on chemo or Xeloda. I'm leaning toward Xeloda. How about you?0 -
My first bc was in 2005. It was very tiny, but is was taken out by lumpectomy, bombarded with chemo and rads. Then, in 2009 a new bc showed up an inch away from the original site. It was considered a new primary, not recurrence. I had bilateral mastectomies with immediate reconstruction. Today, 4 1/2 years later, my left lung is surrounded by tiny tumors, and fluid keeps building up around my left lung. Onc ordered more CT scans and one mri. He wants me to start with Gemzar and carboplatin on Friday!
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Ladies, thank you for chiming in. I feel very, very hopeless. My dear Angus was just diagnosed with bladder cancer (He's a Scottie). Now I have mets to the lining of my lung. The Onc is in a hurry to kill the cancer cells. He said that if the chemo worked the pleural effusion will stop.
I'm happy to see that there's a bunch of women (you) who are bravely going through life with lung mets. This gives me some hope. How many of you are working full time and what kind of work do you do? Am I going to be fit enough to teach my kindergarten class? I was planning on retiring in 2 and 1/2 years!
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Brenda, I wasn't working with I had my first chemo and was glad I didn't. You might consider taking a leave of absence while that is going on or having the chemo on a Friday after school, then you will have Sat and Sunday to recover and ask the school to put in a relief teacher for every Monday. Then see how you do. I was just tired, so forget about housework, and let things go that really don't have to be done now.
Be sure to drink two litres of water for the three days when you have the chemo and after. Chemo is toxic and the water dilutes the effect it has on your internal organ's, like your kidneys.
We live on 8 acres and yes, things came to a halt when I was diagnosed and then had chemo and rads....then things picked up and then I had the DM. Then I became anxious and paralyzed with fear to be happy. Luckily my new GP put me on a medication that got me through and over that.
Now with lung mets, which have yet to bother me in any way - it's a mental challenge for me, not physical. I still use my chainsaw and yesterday was up on the third story roof cleaning out the rain gutters, so life can go on. If you have pain, take a pain pill, if you are anxious, take an anti anxiety pill. If you think it would help you, go to yoga.
Don't let lung mets stop you from living. Then the beast (that's what I think of BC) wins!
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Hello all.
Adnerb, do look into getting some meds to help over rough spots. I learned it from the wonderful ladies on here and asked my doc. Boy do they help!!
THMichelle, yes I think I want to try Xeloda. My doc is all for keeping me out of the chemo room until we really need the big guns. The only thing is the pleural effusions, if I cant get them to go away then I will probably be looking at chemo. I dont think that Faslodex is working either, I was on Arimidex for 6 months and had progression and on Faslodex my lung is still filling up. I guess I will know in a couple of weeks as to what is going on. I would like to get a handle on my shortness of breath so I can do more things.
Also on working, I do believe it is your personal choice. I tried to keep working but I couldn't keep to a time schedule. Arimidex gave me insomnia, and also made me not hungry, so trying to get to food in that small window that I had to eat when I was hungry was difficult for me while working, so I chose to go on disability. I had no problems working with my docs and they worked very hard to make sure I was approved. It was a good choice for me. I found that working and then coming home to do my housework (I live alone) was difficult. Now I have time to do what I have to do on my own time. (like cutting grass, used to take me a couple hours now it takes me half a day!!)
Keep the faith, Euro.
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Is anyone not getting chemo (oral or IV) after lungs have cleared or stabilized? Does this mean I will have to have some sort of chemo for the rest of my life?
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Adnerb, do you know your ER status. My doc wanted to try to go with the least invasive to my life and because I am ER+ we started with the AIs (aromatase inhibitors) first. I was on Tamoxifen after my first diagnosis for five years when I was diagnosed with mets. Because I was premenopausal, I has an Ooph, and then I was put on Arimidex. I had slight progression on Arimidex and it did nothing for my pleural effusions, so I was moved to Faslodex.
So if you find that you are ER+, I would imagine that your docs would probably start there for stability and you will be on one until it stops working, then another, until you need something stronger. I am sorry, but as you read here and get more information, you will find that Stage IV cannot be cured; but we all look for stable or better yet NED (no evidence of active disease). But you will be on something for control for the rest of your life.
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Thanks, Europa. The onc. called yesterday and said that the fluid that they aspirated from the pleural effusion indeed had cancer in it, pathology is still unknown, though he is guessing TN like my fiirst dx. When I asked him about survivability rates that he has seen with patients with similar circumstances, he said, "3, 4 or even 5 years". Ang he sounded cheerful when he was saying that.
I will start gemzar/carboplatin on Friday. Onc is very eager to get the lung mets out.
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Hello my fellow BC survivors. My bc is in my spine and lungs and when I was first diagnosed in aug.2012, I had fluid in my left lung which was drained and I have had no problems with my lungs since that time. I take a daily dose of Aromasin with a monthly shot of faslodex and xgeva for bone strengthening. For the last year things seemed to be going pretty well. My markers, although high, continued to drop. Well, my latest cat scan showed a very small node in my upper left lung which did not appear in the cat scan four months ago. However, at the same time, my markers continue to drop. So......my onc said, this is a wait and see kind of thing. She's scheduled me for another ca scan in two months and i continue with monthly lab tests with my usual treatment. Has this occurrence happened to anyone else? In May after that scan she said my lungs looked pretty clear, but now she thinks with this latest scan that it may be a sign that my meds have stopped working. But have they as my markers continue to drop. What to Think?I don't know
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Tree3,
Lungs are notorious for throwing nodules and cysts as a reaction to everyday life (colds, etc.). If your markers are dropping, I'd give good odds for that little ditzle being benign.
Depending on the thickness of the slices, CAT scans can miss tiny things. So, that liitle nubbin could have been there all along, and just now is being noticed.
Did you have any recent allergies or upper respiratory nonsense that could have caused this nodule? Did the area have a high SUV rating, or is it just "there"?
Waiting sucks, right?
Jennifer
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Jennifer, thanks for the reply. I am under a lot of stress because I'm moving and having a house built and experiencing the stress it involves. My onc. did listen to my lungs and said both lungs and heart sound strong. So.......as you say, waiting is tough. But thanks.
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Adnerb, I'm in my 6th year with lung mets .... Going strong. But yeah, on chemo for life! That part sucks but it beats the alternative as they say!! Best wishes!
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Glenna: I know everyone is different, but I need to know what drugs/treatments have worked for you? Wishing you more years, hoping for everyone's sake that a cure for metastatic bc is found!!!
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Europa-so sorry for what you are going thru. So painful and exhausting I am sure. Please know that we are pulling for you on every step. I had a friend who went thru this too. I believe the doctors try to create a seal by instilling an irritant to the lung lining that is suppoed to stop more fluid build up. Did they try to do that. Of course there is a big risk of infection on top of everything. I am sure you may already be sleeping w/several pillows, this helps you breath and keeps the fluid down lower in the lungs. Big hugs, prayers and keep us posted.
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Tree - I don't think it's very professional for a Dr to say your Ct lungs is 'pretty clear': they are or they aren't. You need to get your hands on a copy of the radiologists report in which they will compare this Ct to the last CT lungs you had. You are either clear, or the radiologist would say a tumour, x by x size, and where, and that a biopsy would be suggested or another CT in a month.
The fact that your blood tumour count keeps dropping is wonderful - meaning less live BC cells floating through your bloodstream, but as we all know, mets can disappear from one part of our body and they say NED and then show up somewhere else.
I'd love to tell you, ah let it go, all is well, but you won't and I can't. Demand a copy of the radiologists report and a repeat CT lungs in a month. Your drugs are working well, so hopefully if this 'thing in your chest' is bc, the drugs will attack it. And as you have no difficulty breathing, that is a very good sign.
Tree - would like to know more about your new place! so exciting
Brenda, you need to ask your oncologist for a list of the drugs that might possibly be candidates for your situation. It all depends on if you are ER/PR+ and other factors. Just tell the oncologist you want to know all the potential drugs and treatments that are available for you! If you don't ask, they don't tell. And another way to think about our situation, instead of being freaked out (or I was) when diagnosed as Stage lV with lung mets, think of it as a chronic disease, like hypertension or diabetes 1, or thyroid insufficiency or elevated cholesterol. All those things require monitoring and are deadly killers, especially the hypertension and cholesterol as it causes heart attacks and strokes. Yes, I will admit chemo is a rough drug and worse than any of the drugs for the aforementioned chronic conditions, but I think you have chosen to fight this, so as you say, 'fists up' and jump in and be pro active.
And how are you Glenna? You and Tree inspire me so much I don't have words to express how. When the oncologist told me I had 3 - 10 years, I first wondered would they be good years, or me lying around hooked up to oxygen. And I got so mad. 3 years of good living is not enough for me - I just turned 61 and my baby is almost 20 but still needs me emotionally (and no, I do not drive into the city and clean his apartment and do his laundry) and my husband is 79 and scared I'll die - something he thought he would never have to deal with due to our age difference. So then I thought I'm aiming for 10 good years and now, thanks to you and others here, like Rhonda and Carolben I'm fighting for many many more great years!
And now I actually can go days and not think about the mets. And when I do it doesn't break me so I cry (a thank you partially to my anti-anxiety pills) and I am one stubborn woman!
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Hey debbie, I find I'm not posting as much as I used to. Guess I'm too busy and that is a good thing. I started my new chemo last week. Getting CMF now, two weeks on, three weeks off. So far, so good. I take the cytoxan by mouth for two weeks starting the first day of my chemo and get the methotrexate and 5FU by infusion. Just had the second infusions Wednesday so I'm on my decadron high and having trouble sleeping.
Leaving tomorrow for a 6 day wine tasting trip in the finger lakes region of upstate New York. This trip was planned when I was on my old chemo schedule but I didn't want to cancel since we are going with another couple. Once again, have immodium will travel! Looks like I've packed an entire pharmacy! My onc told me to enjoy the wine!!
adnerb, I've been on quite a few different treatments. I started on the hormonals and got some years out of those, they like to try those first as they are pills you take at home and obviously easier than chemo chemo, if you click on my name and go to my profile, you can see what I've been on. I will try to edit to show what worked, if I haven't already done that. The ones I know didn't work was faslodex (if that's the shots) and xeloda, although I can't remember if I was taken off because of side effects or progression. Taxotere kicked butt, as well as adriamycin (doxil) and taxol. I didn't get a long run on gemzar and I'm pretty sure that was because of progression. Easy to do chemo, though, so worth a try.
The thing is we all respond differently. My onc keeps telling me there Is plenty in the arsenal and now I'm finally believing me. When I first got the mets diagnosis I didn't think I would be here now, planning a vacation for next summer! Then my granddaughter was 1 and now she is 6 and has a baby sister. I fully expect to be here in 10 years!!
Best wishes to all for a great week! I know I will have one, in spite of that pesky mustard gas (cytoxan) that leaves me with such a bad taste in my mouth!0 -
Has anyone's lung mets responded so well to treatment they nevery got treated again? I'm dreaming, right?
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Yup, I do believe you are dreaming. Unless of course a cure is found during our life time. To date, there is no cure for stage four breast cancer.
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Still, it's nice to dream sometimes... But even if that is just a dream, having a good response to tx so that you can take an extended break definitely isn't a dream. So maybe that could be your short term goal, while waiting for a cure?
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I found a very interesting article for triple negative mets: a miracle cure!
http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/2157
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Just had my first session with gemzar/carboplatin. Gemzar again next week and the week after if my body allows it.
How's everyone else doing?
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Doing fairly well Brenda, please keep me informed on the Gemzar/carbo treatment as I do think that it is going to be in my future not too distantly.
I am just waiting for my scans which will be on Sept. 24th and then my doc appointment to find out the damage (or not) on Oct 1st. So here it is scanziety for the next couple of weeks. Oct cant come quick enough.
Take care.
Euro
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Glenna, hope you have a great wine tasting trip!
I'm in Israel at my son now and it's such a treat! I love him so much and I ache for him - he just can't do enough for me, and has that watchful look over me. The flight went easily - I took wheelchair assistance (& felt silly) just not to have to stand in long queues, & that was a huge help.
Adnerb, I also think that there has to be a way out of this, but I've also gotten to a place of more acceptance, even tho I hate the thought of going back onto chemo. My last Taxol was on Aug 6th, the nodules in my lungs shrank during the first 3 months, then grew back again in the next 3 months. But I'm still symptom free. I try not to think of the future and to stay in the present, which is a good time.
Getting out of my routine is doing me good, as is being with my boy in some warmer weather! My anxiety is less too.
I have what I hope is a trapped nerve (sciatica?) which is painful and of course part of me is saying it's mets to the bone, but I'm staying with the nerve story. Will be having a bone scan in Nov in any case. I'm not going to let a sore back and leg interfere with my vacation!
Am really hoping this break will be better than any medicine and the mets will have shrunk again, but know that's unlikely, my onc is sure they will progress without chemo, but we have to have hope, no? In any case, unless they shrink it'll be back to chemo - probably also Carboplatin & Gemzar. But don't want to think about that now.
I've been swimming every day, which I love, and tomorrow we're going to have a spa day at a hotel at the Dead Sea - wow, my ex husband organized it, so how's that!!
I also stopped working for the 6 months of Taxol, I worked thru 4 months if AC and it was just too exhausting, all my energy went on work and not on healing, I felt. It's hard because no employer will accept that some days I can't be there cos of chemo or ct scans or just feeling wiped out, so I started doing some sewing work with a friend, and I think that's a good start. I do admire those who do work thru tx!
Thinking of you all with love0
