mets to lung
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Welcome to the Club MondaysChild. That is surprising to me that you would progress on Letrozole with your strong ER+ profile. Sometimes I beat myself up over the fact that I declined to take Tamoxifen when I was Stage 0 thinking now that if I had taken it, I would not be metastatic today. Your experience shows me that anything can happen. Best not to second guess yourself.
So happy to see this thread come to life again. Did not know that Barbara had passed away in July. I loved reading her posts. By keeping this thread going we can all continue to see her profile picture and remember her.
Hugs, Susan
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Hey Ladies! I got good news from my PET scan yesterday. Mets are responding to the chemo. Largest is still stable but a few of the other smaller ones have disappeared and or shrunk. SUV reading for all is cut in half! So I am happy with this!
Main thing is NO progression or new mets!Julie
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Ah Julie, good news.
I hope your chemo is tolerable and effective for a good long time and that you can enjoy improved quality & quantity of life, as well as good scan results.
many blessings, Stephanie
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Hi Mondayschild and welcome to the group. I too have tiny mets scattered through out both lungs. All too small and below pet threshold. They have remained stable for a year, so I have heard maybe they are not mets....to yes they are. I have had no type of confirmation. I am going to ask my new onco to biopsy them to see what the status is. Can you tell me about the Vats procedure and if it was bad?
Thanks for an;y information you can give me.
Robin
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rpoole,
Although warned by the surgeon's assistant that this was a very difficult surgery and "like no other surgery I have had before", I have had a very easy time of it. I was a 7:30am start last Thursday Feb 4, scheduled for 2 hours total OR time. VATS is video assisted so much less invasive than traditional open lung biopsy. There are two small incisions and then a bigger one where a large bore chest tube was placed.
You must stay in intensive care until the chest tube is removed, normally a day or two after surgery. Mine was removed the next day. I had dilaudid (sp?) for pain relief which I needed for a sharp pain in my back. That stopped immediately after removal of the chest tube and I have not even needed so much as Tylenol since. After the one day in ICU, I was moved to a regular floor and spent one day there and then home late afternoon on Saturday. I actually went into my office a short while on Sunday and worked short days Monday and Tuesday and all day Wednesday other than onc appointment.
First follow up with my oncologist yesterday who informed me the thoracic surgeon had told him this is one of the most painful surgeries there is, but I found it to be much better than expected. I remain pretty amazed at how well I have done (am at work now!). I read of others saying the pain was manageable and not too bad. Part of the worst was no food or drink for more than a day. Just ice chips.
My mets are just odd all the way around. They are sub-centimeter, the largest being 5-6mm. And they STILL lit up on a PET scan, which they were never expected to be able to do. For you, did they actually try to run a PET or just assume they were too small? My original CT report said they would not be resolvable by PET, but my onc ran one anyway and there they showed.
So a search for "VATS" and you can find a few posts and none of the ones I found indicated they thought the procedure too, too bad.
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Monday,
Did your ONC discuss other treatment options such as Ibrance/letozole or fasiodex/letrozole versus letrozole with fasiodex? My numerous lung mets are small, some characterized as tiny and are showing great improvement with the harmonal combination of ibrance(Pablociclib) with letrozole.
Susan, I took tomoxifen, arimidex for probably 15 to 16 years, several times I was told I was cancer free, but now hear I am, from stage 1, never any lymph involvement until last spring, to stage 4. I think now , how fortunate I was to have over 20 yrs as a stage 1, but I wonder if I had stayed on one of these drugs forever, would it have prevented this metastasis?
Kathy
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Great news texasrose!!!
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Max_otto, I had been on letrozole since September, 2011 after finishing chemotherapy. It was while on letrozole that my metastasis occurred so none of the treatments will involve letrozole.
My new treatment is faslodex only. At an appropriate time we discussed that we will add iBrance.
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Hi Mondayschild and thanks for telling me about your experience with the Vats procedure. Could you have done a broncoscopy? And were they able to determine the ER/HER status since they were so tiny.
I have had many scans and the tiny mets do not light up. The mets are only seen on a chest CT. My Onco (who I just left) told me horror stories about both procedures and scared the crap out of me. He said I could go through all of that and still not know the status because they are so small. The largest measures 8mm and hasn't changed since found Nov 2014. I want to know what the ER/HER status is....so we are treating them correctly. I meet with my new ocno Tuesday and will discuss this with her.
Also my initial onco when first diagnosed with breast cancer 4 years ago, never even mentioned getting my ovaries out and I was 100% positive. The Tamoxifin failed and I wonder if my ovaries had been removed...if my chances might have been better. Do you still have yours?
Robin
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Can someone explain more about "light up". When originally diagnosedi in 2011 I was told my cancer lit up when reviewing the MRI. However, this time no one issaying anything about lighting up. CT showing one enlarged hilar node and 5 to 7 nodules that they think are cancer but all under 7mm so cannot biopsy. Biopsy wAs done on enlarged lymph node. Is it worse if it lights up? Does it only light up on MRIs?
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rpoole, my pulmonologist said they could try the broncoscopy, but only the VATS would be sure to give a definitive diagnosis. They got two nodules with wedge resection. To my surprise, even though small, they are big enough to do lots of stuff: determined they are both 100% ER and 100% PR responsive (original was 99% and 95%). Also had plenty to send out for genetic testing. Go figure.
I had the crap scared out of me too over this and was really worried. I was more afraid of the procedure itself than what it might reveal. But turns out not bad at all and I am very glad I did it because I now have solid answers. Mine are smaller than yours. The largest one I have is a one that was 6mm. The rest are all smaller, but clearly very active since they can be seen faintly lighting up on the PET scan.
I still have my ovaries but I was already post-menopausal at my original diagnosis.
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singlemom, the "lighting up" we are talking about is referring to activity seen on a PET scan. The PET scan process causes highly active cells to attract a radioactive material injected in you right before the scan. That is referred to in the report as SUV uptake. The more uptake, the more active the cells...as in rapidly dividing like cancer cells do. The helps diagnose what is seen on a CT scan.
Typically, the mass has to be a minimum size to be detectable through a PET scan. Sub-centimeter nodules like I have are not normally able to be seen on a PET so it demonstrates how very active they are. They sucked up a lot of the juice for being such tiny little buggers.
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Mondayschild, You make me feel better about the Vats procedure if that is the one my new onco chooses. I only have 1 lung met 8mm and one 7mm and the rest are tiny scattered throughout. None of these are hypermetabolic. Do you know what size they have to be to have FDG uptake?
Thanks, Robin
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rpoole. I recall being told they needed to be at least 1cm or so to have a PET show any uptake. Not that there was no uptake, just too small to see on PET. Yet mine are all 5mm and less and still showed.
My thoracic surgeon intended to get two nodules and that is what he got. At my initial meeting with him, he told me he intended to go in the right side and knew just where he was going to go. I was later told this guy is doing some pretty cutting edge stuff related to lungs and cancer surgery, so maybe he is able to zero in and get very small ones in a manner they are able to be dealt with in pathology. And do it with less trauma. Don't know. If you would like your new oncologist to consult with my oncologist and/or this surgeon, send me a PM and I will give you their names and contact information and identifying information about me. Maybe they can share something about my case that would shed light on yours. This having a bunch of small stuff scattered everywhere in the lungs is not a normal presentation, so maybe there is something in my info that can help you.
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thank you mothers child
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Hey Mondayschild...I was told a PET could read as small as .7mm. When a PET/CT is done the CT picks up on the measuring part of the smaller things that show up (.5 mm). These smaller images may not show any uptake but the Technician measures them so they can be monitored from scan to scan.
Julie
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Julie, the largest of mine was one at 6mm and the rest are 5mm and smaller. In spite of their small size, they still showed SUV uptake on the PET which they were not expected to do, but did. Onc said it meant they are very metabolically active.
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Mondays child...that makes sense. Did they tell you what the SUV numbers were?
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Hi Texas and MOnday's child
My lung met is 3 x 4.2 x 4.8 cm I guess that is pretty big.?? How much bigger are 7mm and 8mm compared to this??
Any ladies on here with lung mets experience a lot of coughing. Lately I have noticed that I am coughing a lot more. MO said to take Robitussin. :-)
Rosieo
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Also what is SUV numbers
Thanks Rosieo
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Hey Rosieo,
1 Centimeter = 10 Millimeters. The SUV is the uptake or glow of the mets from the FDG (fluoro-deoxy-glucose) that is injected prior to the PET scan. The higher the SUV the more aggressive or metabolic the cancer is. It is basically another measuring tool. They measure the SUV from PET scan to PET scan and if the SUV goes down or remains stable that is good. Just like the size staying the same or going down is good.
I hadn't experience any coughing.....
Julie
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Texas
Thanks for your reply. It sounds like it's a "biggie". Well hopefully with the Abraxane it will shrink it. The thing is I feel good and think how can this be?? :-) After starting the Abraxane I have no pain and my only problem is this persistant cough.
Well thanks for listening and I will hope my next scan is a better one. And Good luck to all you ladies on here. May all our tests give us good news.
Rosieo
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Rosieo,
My persistent cough plus a partially collapsed lung area eventually led to a biopsy of one lung nodule among many that my (incompetent, irresponsible and now former) pulmonolgist had been "following" for many years. When it was discovered to be metasticized BC, I returned to my oncologist of years before. He put me on Faslodex, which--along with new allergy and asthma meds in spring and fall--soon stopped the coughing.
Tina
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hello ladies,
My monther and I are both breast cancer survivors, I've been 5 years and my mom, only 2. However; she has had this dry cough, for about 2 months, doctors did a X-ray and CT-scan as a check up, they have found about 6 nodules glass ground, they have said to keep an eye and next CT scan wil be March 27th. All the nodules are 6mm or less. Only left side. No fluid, no lymph nodes.
I am so scared. At times I think the worst others I try to stay positive. I was diagnosed at 31, so in my mind anything and everything can happen.
Would someone mind sharing what can be some side effects.
I had spoken to a doctor that specializes in respiratory, he told me they are too small to biopsy, but they can do a wash...
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I'm sorry ladies, for pasting here. I did it without checking0 -
Tina
Thank you for that info. Is Faslodex a chemo drug? I am Triple Negative. Will ask my MO about it as I am not happy with this cough because it is getting worse.
Thanks again
Rosieo
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Texasrose, the SUV numbers were very low: .6. Mostly because they were so very small and should not have been seen at all at that size. I was told any level of uptake was remarkable at their small size. Chest x-rays all remain perfectly clear and normal.
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Rosieo - Faslodex is hormone theraypy - taken via shots. I had a dry cough for several months, then pleural effusion of left lung at Xmas. Lab tests and PET determined nasty cancer was back, one micronodule in left lung along with sternum, etc. Tina2 - happy to hear you have been on Fas since 2011. Any SE? Fas seems to be a cancer drug de jour right now along with Ibrance in holding off progression. Please ask your onc if you are a candidate. http://www.curetoday.com/articles/fda-approves-ibrance--plus-faslodex-for-hormone-receptorpositive-breast-cancer
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Hi ladies,
My deepest respect to all of you courageous women.
I'm here to learn and help support my BFF who has stage 4 bc triple negative Mets to lungs. She was diagnosed in Jan 2016 and first was found in breast then a month later a CT scan 5 tumors in lungs. She begins chemo on Monday.
My oh my...
I'm scared for her and I'm trying to stay positive. How rare is this to have mets to lungs so quickly after dx? Perhaps she had always had it and they discovered it after the bc dx. I don't know. But her mother died of bc around this same age (53). Last few weeks, she is feeling very tired and sleepy a lot.
Her onc said 2-3 years even with chemo. I don't know the treatment yet aside from it being 8 weeks. Onc said after that, another round. It is a rapidly growing cancer.
Thank you for all your posts and input. I've learned a lot. Please advise what I can say or do to help her most.
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Oops, sorry I haven't responded to questions. Haven't been on this thread for a few days.
Rosieo, I think Faslodex treatment is inappropriate for you; it's an anti-hormonal and your cancer is triple negative. Please check with your onc to find out what can be done about your cough.
Lalady, the major SEs I have from Faslodex are joint pain (in addition to arthritis!) and weight gain (on top of aging!). The pesky, merely annoying ones are injection site lumps, pain and itching. I have asked my onc about Ibrance. He wants to hold it in abeyance as long as the Faslodex is working on its own. This is fine with me.
Tina
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