mets to lung
Comments
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Susan,
I have to say that I feel a bit better when I hear that 25mm isn't so "freakish" and I'm glad that your nodule was not lung cancer - thank goodness!
.. How did your Oncologist proceed with treatment from then on?He ( the onco) made it seem like it was the end of the world. I know that he may be just wanting to attack this right away but I don't know him that well and I'm honestly unsure about the call he is making here to move forward with taxotere.I feel like he is jumping the gun without really finding out the nature of this nodule.
I also feel like I need an additional scan, a PET to confirm whether there is metabolic activity ( the avidity as you call it)
I feel like I'm still learning a lot, being 29, trying to live my life, building a home with the love of my life and NOW possibly being even more active in the ultimate decisions about my health. It seems like the doctors go by the book, statistics and studies. Yes, that helps but every individual is different and everyones cancer behaves in a different way. Sometimes new drug combinations need to be tried or a new way of looking at the disease needs to be applied. Sometimes cancer cells even mutate and the whole course of treatment needs to be changed!
I feel a slight disconnect between this Onco and myself
and am scared to let him steer the ship because...well, the ship is me.Thanks again
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Susan,
I have to say that I feel a bit better when I hear that 25mm isn't so "freakish" and I'm glad that your nodule was not lung cancer - thank goodness!
.. How did your Oncologist proceed with treatment from then on?He ( the onco) made it seem like it was the end of the world. I know that he may be just wanting to attack this right away but I don't know him that well and I'm honestly unsure about the call he is making here to move forward with taxotere.I feel like he is jumping the gun without really finding out the nature of this nodule.
I also feel like I need an additional scan, a PET to confirm whether there is metabolic activity ( the avidity as you call it)
I feel like I'm still learning a lot, being 29, trying to live my life, building a home with the love of my life and NOW possibly being even more active in the ultimate decisions about my health. It seems like the doctors go by the book, statistics and studies. Yes, that helps but every individual is different and everyones cancer behaves in a different way. Sometimes new drug combinations need to be tried or a new way of looking at the disease needs to be applied. Sometimes cancer cells even mutate and the whole course of treatment needs to be changed!
I feel a slight disconnect between this Onco and myself
and am scared to let him steer the ship because...well, the ship is me.Thanks again
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mygod,
Sounds like you need a second opinion and perhaps a new MO. In any case, as you said, we need to steer our own ship because no one else cares as much about the outcome as we do. I also agree with you that every individual is different. My MO even told me that she has never seen a case like mine before and she has been at this a long time. I trust my MO completely but I always ask a lot of questions. I also have some comfort because my MO is part of a group of doctors who review each other's decisions. There are tumor boards to review a surgeon's work for example so it's not just the surgeon who determines whether the margins were clean.
Did your MO go over your previous scan to verify that nothing was there? My brain MRI report talked about a new, post-radiation lesion which was worrisome but my RO looked back at the previous scan and verified that it was already there before my whole brain radiation. Big difference to me, shoddy work by the Radiologist.
You are very young to be dealing with all of this but to me you sound very knowledgeable and mature.
Hugs, Susan
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Susan,
Thank you but I'm definitely not as knowledgeable as I'd like to be on this matter. I wish I was a scientist so I could cure cancer for everyone!
The Onc did look at the previous scan and said nothing was there and, when i read the reports it did not mention it either. I'm waiting to get the CD's of the images so I can look at it myself and see if something was missed. Possibly even take these to the Pulminologist ASAP. My tumor marker was also 15 at the time and up to this point it's been a pretty good indication of disease progression...and this is definitely puzzling as well. How can there be a new activity without the tumor marker rising?
I know that some doctors don't use tumor markers because they think it's not all that reliable and it can have mixed results for some people. Maybe for me this is NOW the case where it did a 360, although like i said up until now it was a good indicator.
Weird..
I definitely feel a bit overwhelmed because my gut is telling me to go against what the Onco is saying but at this point something has to happen.
Peace and Love
Izabella
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Izabella,
You are being proactive about your BC and that is a very good thing to be.
FYI: I grew a new primary, which was 3.9 cm., from nothing (according to mammogram) in a span of 6 months. I don't even know for sure if it was not faster than 6 months. It felt more like overnight! I just woke up one day, vacationing in the Far East, looked at myself in the mirror, and was surprised to see that my formerly lopsided chest (because of lumpectomy), was perfectly symmetrical! So I felt and felt and sure enough there was a hard walnut that wasn't there before!! That's how I discovered my 2009 "recurrence". Sorry this must be scary. I am sweating just remembering it. Some tumors do grow fast.
It sounds like your new MO wants to use the big guns on your new cancer. My MO was just like that.
Take care.
Brenda
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Thanks Brenda for the article. It comes really close to that description of all-consuming fatigue. I had a venous access port inserted about 6 months ago and recebtly my neck on the rt ..port side..is very achy much of the time. Anyone else experience this?. It was more difficult to access last infusion. Appreciate any feedback re this. Hugs, Peg
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Hi All - Newbie to the site, not to mets to the lung. I found out by accident that I had recurrence of bc with bi-lateral lung nodules in 2012. I was on Femara until July 2014. Femara took care of all of them except for 1 nodule. Switched to Faslodex in July. Nodule is still growing. I am supposed to a wedge resection of the lung to remove the nodule in a few weeks. Pretty big surgery. My MO's and the radiologist all said to get it taken out. Anyone have this surgery done? Really hoping that the meds would have taken care of this on their own. MO said the surgery can add years to my life.
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Hi kickincancer,
Welcome and good luck on the surgery. I myself have not had the surgery, but if you are eligible to get one, then you are lucky, because it means that your tumor area is small enough to be resectioned! Please let us know how it goes.
Brenda
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Hi ladies,
I am not sure if I have mets to my lungs (will find out in a week when i get my scans) but I am hoping you will be able to help me, or at least relate to what I'm going through...
I have had increasing shortness of breath over the past several months. My scans showed an "area of consolidation" (whatever that means...onc said it meant they had no idea what it was!) and pleural effusion. I got the lung drained, which did absolutely nothing for my SOB. So I got referred to a pulmonologist.
They did complete pulmonary function testing and found that while my 02 saturation was entirely normal, my lungs were not. (well, duh, I could have told him that!) Basically I have "restrictive" disease, which the pulmonologist says means my lungs are "tight" and I can't take in as much oxygen, or expel as much, as I should be. When he found that I'm getting scans in a week or so, he was very casual about it, basically saying that I should hold off on worrying until the scans.
Well, that's all fine and dandy, but in the meantime, I can't breathe!!! It feels like there is a tight band around my upper ribs so I can't inhale as much. And it's getting worse, to the point where if I walk to the bathroom I can feel my heart rate increasing to offset the lack of air. Just coming up the stairs makes me pant like a dog and feel like I'm going to pass out.
The dr. said that I don't need to have supplementary oxygen because the problem is not the oxygen, it's a "mechanical" problem with my lungs. He likened it to a toaster: if the toaster doesn't work, it doesn't matter how much bread you try to stuff in it, it still won't work.
So in the meantime, my lungs are toast (haha) and I can't breathe, and I am SO tired. So I'm hoping somebody can answer my questions:
-Is this how you felt your lung mets? (I am not trying to find out if I have lung mets since I will know soon enough. I just want to know if this is "normal" for lung mets)
-Is there ANYTHING that helps with shortness of breath like this? Any exercise, medicine, anything?! I went to the ER about a month ago and they basically just scanned me and said everything looked okay except for that small area of consolidation and I should follow up with my doctor. So I know they're useless. My onc said that this was "out of his expertise" and that the pulmonologist should tell me what to do, but the pulmonologist (who was a decent and very thorough doctor) doesn't seem to think there is anything to do at this point.
Agggh. Any thoughts, advice, comments would be welcome. And sorry for the long post.
Thanks.
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I have lung mets and no symptoms. Everyone is different. Can you get your scan moved up? Let us know . We care
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My SOB was relieved when the lung was drained (this was before my bc dx). They can test the fluid for all sorts of things, including malignant cells, but in my case nothing showed up. I needed a PET/CT and then lung biopsy to determine it was mets from bc. Do you have results from testing the fluid?
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Testing from the lung draining was negative for cancer cells. It was about 6 weeks ago, so the pulmonologist didn't think the issue was cancer, but you know how fast cancer can grow. They also said it could be caused by extensive chemo, radiation scarring, pneumonitis, or any one of a million other things. I wish I could move up the scans, but unfortunately that's not an option.
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raro - My pleural effusion tested negative for malignant cells, but they were pretty certain from the PET scan that I have cancer on the lining of my lung. My symptoms were like yours, but they were relieved by a thoracentesis.
I have a friend with pulmonary hypertension, and the symptoms she describes sound like yours. Not that I wish that on you instead. But in answer to your question, what you are going through is not like my lung mets experience.
I really hope your pulmonologist is able to give you something better than a toaster analogy. I hope you can pin him down to a diagnosis that you can understand and deal with. And I hope the shortness of breath goes away soon.
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I have plural effusion, nodes in my lungs, cancer in the lining of the lungs, and am on oxygen 24 7 cause i can't breathe.
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Regarding Pleural Effusion......................
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I, too, have nodes in the lung, Cancer in the lining of the lung, and pleural effusion. My activities are limited by my SOB. It's not that I mind not being able to vacuum and clean house, but walking to the mailbox without huffing and puffing would be nice. I've never found anything that helps, so if anyone has any answers, I'd appreciate them as well. I just keep,pushing myself to do as much as possible. I would love to exercise more but when it is so difficult to breathe, exercise isn't enjoyable. Thank goodness I can do most of my Christmas shopping via mail. I am always physically exhausted after the grandkids come to visit (but emotionally on a high). Guess we just take the good with the bad. :
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raro,
Your pulmonologist should be able to tell you whether the pleural effusion is exudative or transudative, based on the chemistry of the fluid. If it's transudative it's very unlikely to be malignant and if it's exudative it's still a possibility since malignant cells don't always show up when the fluid is tested. It does sound as if something else is going on with your lungs since the thoracentesis didn't help with the SOB. You know you're a cancer patient when you're relieved that something else is wrong with your lungs. I hope they figure out how to give you some relief soon.
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Thanks Brenda! I will keep you updated on the surgery and how the recovery process goes. Chris
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what is your pulse/ox when they put that little thing on your finger after you walk around?tell them you can't breathe, scream it at them, t hey have to listen.
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Raro,
I hope they find out what is causing your SOB! Pleural Effusion will do it, and you get relieved immediately after draining. In my case, my pleural lining filled up very shortly after it was drained! Maybe you need another draining?
I would ask to be admitted to the hospital until they find out what was wrong. I was in the hospital for 5 days, and that was the best place for me as I was useless anywhere else. At the very least, I think you need to be attached to an oxygen tank.
Take care.
Brenda
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Hello
I have just joined to gain information to help my sister. She has stage 3 breast cancer for 3 years and now has mets to lungs. Her dr told her she has 6 months to live with no treatment and maybe 2 with treatment. She and i are devastated. She only has 1 micro met in one node, had chemo and.33 rounds of radiation. She was on tamifen which must not have worked. I believe her dr did not give her proper scans to catch this. She has mets on both lungs.
We are moving her back home and to a new oncologist. I get such hope reading your suvival stories. You are all an inspiration to me.
Please tell me the best drug to shrink lung mets?
Thank you. (Er/pr pos and her neg
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Hi Krista,
Welcome to BCO. We're so sorry to hear about your sister and would like to Send big hugs and kind wishes to her, you and your family
We are sure the ladies will be along soon to share some advice with you.
Warmly, the mods.
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Krista, I had innumerable mets in both lungs, malignant pleural effusion and malignant pericardial effusion when I was diagnosed in 2011. I have been on hormonal therapy (along with supplemental therapy) ever since and thankfully am able to do everything I used to do! I know many people with lung mets who are doing very well years later.
I strongly support your decision to consult with a different oncologist. If your sister is postmenopausal, she may be given Aromatase Inhibitor (AI) therapy, and if she is premenopausal she should be considering Lupron (or similar) therapy to suppress ovarian function, or even an oopherectomy. She could then be a candidate for AI therapy.
With best wishes.
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Hi Krista,
I was also diagnosed with lung mets last year. Gemzar/Carboplatin eradicated the tumors after 3 months and I had NED from November 2013 to March 2014, when I had progression. I tried Femara, which helps a lot of hormone positive BC's but did not help me, so I went back on the same chemo combo. I had more progression as per July 2014 CT scan. I started Abraxane which gave me major regression and stability. I am now trying another AI, Faslodex.
It is great that you are supporting your sister!
Brenda
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Krista,
That makes me so angry that a doctor would talk that way to your sister. I think you need to switch MO right away. He has no way of knowing that she will only live for 6 months or whatever. I have a friend whose sister-in-law has lived 21 years in Stage IV starting from age 18. Hell, I've got brain, lung, eye, bone and breast tumors and I've lived more than 6 months already. No plans to go anywhere soon either. As we often say on this board, "We don't have expiration dates!".
Hugs, Susan
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I'm also past my sell-by date. I had pleural effusions over four years ago and, while my pleural nodules still show up on CT scans, they're much less active and I'm still on anastrozole with no progression.
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When one of the pulmonologists gave me some "survival stats " for MBC with mets to the lung he said beween "x and x" and I asked...."starting when?"
And if you really thought about it ...."When did the cancer cells migrate away from the carnage of my first diagnosis and treatment? Was it after the chemo or after the rads or after the AIs for 5 years? And does it really matter? They are here now but with my friendly scanner and "marker" analyziers hopefully progression will be kept in check.....until the next "game changer" It has been quite a year for me since MBC appeared on the scene but realistically we're ON IT ....like a chronic disease......surveillance and then react! Think I will go take a nap now or plan a trip to see my kids "out West"! Hugs, Peg0 -
Oh, Krista. So sorry for what your sister is going through. You are a good sister to be her advocate. No doctor should tell a patient they have between this and this to live. I have had lung mets for over years now. You can see all the treatments I have tried. My Onc keeps me on something til it quits working and then we move on to something else. I've been on a 3 mo break due to low blood counts but will have chemo in Wednesday. I started Carboplatin in April and will continue with that. You will find many with stage iv BC that have been here as long as I have. Please take the advice others have given and have your sister get a second opinion! Blessings, glenna
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Hello Ladies, I am newly diagnosed stage 4 with lung mets. A week ago today I found a lump in my neck above my collarbone. Called my onc immediately and he had me go in for a CT scan. Got the results this past Thursday and his exact words were "it doesn't look good" There were lesions on both lungs. He said on the off chance that I had some kind of infection...but that was not likely with my breast cancer history. Even though I have had a dry cough for 2 weeks and a burning sensation in my throat. He said the tamoxifin must have stopped working. I went for a biopsy on the lump in my neck to see it the ER/Her statas has changed. I was ER+/HER- initially with my first diagnosis, so I will find out the statas after the holidays. He also said without any treatment (which I wouldn't even consider) life span is 6 months and with treatment 2 years. I have been crying nonstop until my sister found this board of Stage 4 women living well beyond 2 years. With that said I am switching oncologists asap. He has a very thick accent and I have never been able to fully understand him. I have been cancer free for 3 1/2 years and had no follow up scans. Is it normal to get these scans??? And Im the one who found the lump in my neck..not him. Any encouragement is greatly appreciated.
Hugs to all of you!
Robin
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robin, I heard " it doesn't look good" over 6 years ago. Wise to get a new oncologist. One day at a time.
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