mets to lung
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Jab, 6 years before my Stage IV diagnosis, a small nodule was discovered on my lung. After 6 months it hadn't changed so we stopped worrying about it. Several years later I presented with widespread lung mets.
Hopefully that will not be the case for you - yours may be benign. But if I could have done it all over again, I would have insisted on having it removed. Removal of a solitary malignant met, (a condition that is referred to as having oligometastasis) is frequently associated with a superior outcome.
With best wishes!
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Thanks Bestbird and Adnerb. Thanks for the honesty Bestbird and would you mind sharing what your origional BC was? (feel free to PM me). I wasnt aware that lung cancer was a 'typical' route for BC so am wondering if what I have it a more typical for lung cancer mets.
I realize this may be nothing, but better to undertand the risks than not.
JAB
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Adnerb-my scans were all with contrast, but 2 different machines and a different radiologist reading each one. I'm trying to stay "in the moment" and just try to forget my concerns; my onc assures me that even if the new lesions are a progression, we don't lose anything by waiting 3 months to rescan, but it would be sad to abandon an easy treatment (Herceptin/tamox) if we really don't need to. So more news in May, I guess.
Jab-everything on CT scans that are less than 1mm are very hard to biopsy and they can come and go and not mean anything. I had a bunch of little tiny nodules on my CT from July that are now gone. But the watch and wait thing is really hard when you want answers!
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Bestbird, how are your lung mets?
Hugs,
Brenda
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Aimee, they did a CT guided biopsy on the largest accessible node in my one lung, but couldn't get enough of a sample for full pathology. The cytology showed it's malignant, but they couldn't test to see if they are also triple neg. my onc said the mets are too small & numerous and was against surgery, said chemo was the best treatment. Did 6 months of Taxol, which gave me some regression in the first 3 months, then stopped working. Now I'm on Xeloda & my last scan shows stable - no progression. I don't know that there is a 'gold standard' for treatment, but as far as I see from the threads, we all seem to get the same chemos at one stage or another. Hang in there, see what your onc suggests. Write up a list of questions for him?
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Bestbird - thank you for the advice. My Dr. has said that she would classify mine as oligometastasis - even though there are two that they can see. (her non-optimistic statement: where we see two we know that there are more there we just can't see yet - aargh). I feel like taking out whatever can be seen sounds like a good plan, then chemo to kill whatever else might be lurking - but I don't have any info to go on. I handled chemo pretty well the first time - taxotere and cytoxan, and don't fear that at all. Biopsy is Thursday, can see the doctor until Tuesday afternoon for the results. Another long weekend of worry.
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Carol, I did not know that you did not get a full pathology of your mets. So they were not totally sure your tumors are TN. Yet they are treating them as TN, is this correct? Also, I am glad to hear at least they are very tiny (though numerous).
Aimee, if you and your onc disagree about your treatment I would recommend another opinion. I asked for another opinion and was glad to do it, though I found out that my onc was right all along and that he knew what he was doing.
Hugs to everyone!
Brenda
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My biopsy is in the morning. I am very very worried. Haven't told anyone in the family yet until results come back - won't see my oncologist until the following Tuesday. Trying not to think of all the implications of a bad result but hard not to.
It feels like the beginning of the end.
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Aimee, there's a chance it isn't cancer, right? Your doctor could be wrong. I remember right before my ct guided needle biopsy I asked my doctor, "What if all the tumors are gone?" He said, "That would be a miracle!". Well, there was nothing to biopsy. My tumors were gone.
I am fervently hoping it's not cancer! But if it is, you should know what the pathology of your tumors is, and a treatment plan will be in place very soon after that. My doctor opted to attack the mets aggressively and I am glad that he did.
Hugs,
Brenda
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JAB, my original (Stage II) bc was diagnosed in 1993 and was ER+ and PR+. At the time they did not know about Her2. My solitary lung nodule was found incidentally via CT in 2005, but since it didn't change on a CT 6 months later we didn't follow it further. The thing I and my MO should have realized is that mets may or may not change quickly, and hence we should have continued to follow it. But I simply didn't think to do that.
By the time my lung mets were diagnosed it was 6 years later, and I'd been symptomatic (and misdiagnosed) for 4 years. My TMs were always normal but I had a dry cough for 4 years which the doctors thought was either post nasal drip or asthma. Once I lost my voice (due to a met pressing against the laryngeal nerve which caused paralysis of one vocal cord) a doctor who knew what he was doing ordered the appropriate tests and figured it out. By then I had a litre of malignant pleural effusion as well as pericardial effusion, and extensive lung mets.
In about 30% of the cases where bc metastasizes, it goes to the lung. Most often it goes to the bone first. Wherever it goes, it's still bc (not lung cancer or bone cancer).
Brenda, thus far I've been on letrozole (knock on wood!). Thank you so much for asking!
AimeeMac, please accept my best wishes on your biopsy! There is always the possibility that things will turn out to be something other than bc! Please know we're hoping for good results!
All - I participate on three mbc forums almost daily and might sometimes miss someone's question. I would feel very badly if this were the case. So please feel free to PM me any time - that way I'll definitely respond!
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hi all. Aimee I hope your biopsy was not too uncomfortable and that you get a favorable outcome. I had a lung biopsy done last week on 1 of 2 nodules in my lung that had grown quite a bit since August (during which time I was on chemo, which is confusing). What is very confusing is that none of the drs can say if this is mets to lung or a separate lung cancer. My BS feels like it is mets because of my age and bc history. But the pathology report says it does not completely match my bc pathology. Of course there are no estrogen receptors which makes the path dr lean towards lung cancer, but hello, my bc didn't either. These spots were always there from my original dx, but they started out as 2mm an 4mm last march. Now they are 6mm and 13mm. I don't know what the point to my rambling is... Other than I am dismayed that I still have no answers or treatment plan. I have to have a PET (which they have not done before, and I'm scared that the whole thing is going to light up) now and see a thoracic surgeon, so more waiting while I am ticking like a time bomb. Has anyone else had an experience like this? Also they keep asking me about shortness of breath and coughing, which I have not had. But it just occurred to me that maybe I should have mentioned the constant throat tickle I have had for the last month. I am constantly clearing my throat and it feels almost like a sore throat but not exactly. Could that be related?
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Thanks Bestbird - I appreciate your response. I see my BS yomorrow to discuss next steps.
Deliriimpie - Your note is actually timely and of interest to me, My node is 6mm so I was thinking they couldn't biopsy because it was to small.How did they biopsy your nodes?
JAB
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hi jab. They only biopsied the larger one that is 13mm. Now I'm going for PET to help determine if all spots are cancer. I also have a lymph node showing up near my pancreas, that no one thought to tell me about until today. She says this will help determine course of treatment. Normally the PET would be first but the MO skipped that because she was pretty certain that it was cancer and thought that the biopsy would give a more clear result and more quickly. So much for that theory....
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Sheila: Are you able to go to MD Anderson for a second opinion? I've heard a lot of good things about them. If I responded unfavorably to treatment that's one of the places I'd like to visit (if money is not a problem).
Even before all the tests done on my mets my onc thought it was triple negative because it went to the lungs. He said that's where triple negative mets go first (soft tissue).
Hugs,
Brenda
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Brenda- I have been giving serious thought to MD Anderson today. I'm just a little torn because I don't want to cause any more delays than I am already hitting. Thank you for sharing your drs point on TN. I had not heard that before. I swear I get more info here than from the docs. I will bring that point up when I get to speak to someone again.
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Hi Ladies,
Regarding PET scans, they are not protocol in NB, meaning the the medical community here does not think they add anything to the diagnositic process so are impossible to get and my province has a total of 2. . That said, I can go else where to get one. So today I talked with a company who does this and was told that they are better with certain kinds of breast cancers but can cause false positives and negatives with other types.
So my question to those in the 'know',
Have you had good success with rge PET scan being additive to your diagnosis
And if so, what exactly did it help with?
It will be a pretty large financial committment if O get one so I want to make sure it will give me valuable information. Any information you can provide would be very helpful.
JAB
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Jab - I have been lurking here a couple of days trying to learn because they found some suspicious spots in my lungs and sternum during my annual breast MRI on Wednesday. I had both a PET and CT scan yesterday. CT scan results show "very concerning" nodules in both my right and left lung along with enlarged lymph nodes behind my breast bone (behind the original surgery site). I am answering because you were asking about a PET scan. They don't have an official radiologist's report yet on my PET scan, but "unofficially" it shows above normal activity in those spots. That is what a PET does is show unusual activity that other scans don't show. In my case, they were going to do a biopsy on the CT scan alone regardless of a PET so not sure if it adds any real value. At least I have insurance to cover it. My biopsy should be next Tuesday or Wednesday.
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Had biopsy yesterday, took the day off but trying to work today. Will talk to onc on Tuesday afternoon. Really trying to avoid too much cyberchondriac web surfing until then. Had to hint a little to my mom today that I was having more testing since she was concerned not being able to reach me for a few days. Now I am sure she is freaking out. thank you all for your hopeful but realistic posts. This feels like such a rollercoaster;
probably the most overused analogy on this board.
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jab,
I had some pleural nodules that showed up on a CT scan for another issue and was referred to a pulmonologist since I had had two other cancers. He was about to discharge me after a year because there was no significant change when the last scan showed a large pleural effusion. Testing the fluid removed (twice) showed no malignancy or any other cause and every doctor I asked said it couldn't possibly be related to the blob in my breast that didn't show up on mammograms or ultrasound and was believed to be a cyst. They all said I was fine, come back in a year. My PCP was unconvinced and sent me to a thoracic surgeon for a lung biopsy, but he said the nodules weren't large enough to biopsy and I should wait a few months for another scan. By then my nipple had inverted, they decided I did, indeed have breast cancer, and ordered a PET/CT to see if the pleural effusion had been related. Well naturally all those little nodules I'd been told were normal lit up and I was sent back to the same thoracic surgeon for a biopsy. He had the nerve to tell me that I had "refused" the biopsy earlier, but now that I had PET scan results, he had no objection to the biopsy, which showed breast cancer cells essentially the same as the breast biopsy. Don't ask me why he could perform the biopsy now that was impossible a few months earlier.
My point is that all the tests I'd had previously were read as normal and it wasn't until I had the PET/CT that cancer of any kind in the lungs was diagnosed. It may be true that once you have the diagnosis of metastasis, CT scans can be used to follow them, but in my case there was a clear value in the PET/CT for diagnosing them in the first place.
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For whatever reason(s), diagnosing bc can appear to be problematic to the medical community. My mbc tends not to "light up" very much on PET scans and hence CT scans with and without contrast were used once mbc was officially diagnosed via a biopsy.
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Been reading posts but not posting much. I'm in a tizzy and going for thoracentesis tomorrow which is causing me much anxiety. I'm not reading back on the thread as I'm terrified I will read about someone's bad experience and my head is imagine plenty of that on it's own. It seems like the pleural effusion has gotten 3x worse in the right lung and it's time to get the fluid out. Breathing is difficult. Onc recommended I focus on the fact I'll be able to breath better after the procedure. Am welcoming all positive feedback. Hugs. Jean
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Hi Jean, I've had it done once and would do it again because I got so much relief from the procedure. They do it so often that they get really good at numbing the area. I had a nurse by me the entire time. She said her job was to keep me as comfortable as possible and she did. She had me propped up on a pillow and kept rubbing my arms and talking to me. We talked about our children the entire time and laughed a little too. It a fairly quick procedure. I had an x-ray following it which is how they check to make sure that all is well and that they didn't puncture a lung!!
I hope all goes well for you tomorrow. I think you will be fine with it. I went home and rested afterwards and will have to say that I could breathe much easier.
Love to you and all!!
Judy
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Hi Jean,
You may also feel better if you have an ultrasound-guided thoracentesis. In my case I was assured that they were not poking my lung. My technician was very nurturing and the experience was so positive I kept going back. In fact the last 2 times were just to check fluid levels.
You will be told that it is natural to cough a little when the fluid level dwindles. My tech stopped every time I coughed, making sure I was not in pain.
My pleural effusion finally dried up to normal levels after chemo.
You will be so relieved!
Hugs,
Brenda
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Thank you both. My Mom refused the procedure and died three days later so it seems to be a big deal for me. I don't always feel brave and courageous. I'm up early (3:45) waiting for the 9:30 appointment. Looking forward to breathing better. Hugs. Jean
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Jean, want you to know I'm thinking about you this morning, I've had one procedure and never needed another one. I was afraid too, but it wasn't as bad as I anticipated. And yes, my breathing improved greatly! We're behind you all the way!
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good luck Jean, thinking of you, hope it'll go easy and you'll be breathing easier soon - big hug
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Jean, hoping the procedure went smoothly and quickly for you!
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Sending healing thoughts your way Jean.
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Jean, I hope everything went well and you are feeling some relief. (((HUGS)))
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Padiddle
Hi, Jean. I've had you on my mind a lot today!! I hope you are resting comfortably now and will get a good night's sleep!
Judy
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