mets to lung
Comments
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Blessedwith - Stephanie make some very valid points. However, if your friend got the "yips" driving, maybe offer to drive her to UCLA. Then you can be in the diamond lane. Something tells me she tried, and then the traffic got to her, and now sounds defeated. How long is the drive - even Uber could help, but your presence may make a difference - or not. Just my kind thoughts.
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Blessed....I am with Stephanie. Not really the route I would have wanted her to go. But it is her decision. She has to deal with her cancer her way. I had a friend many years ago, before I was ever diagnosed whose wife chose not to do any type of treatments with her early stage BC. She made the decision that she just wanted quality of life. She passed within a few months. That was so hard to understand. But it was her decision to make. As a BFF all I can suggest is to support her decision and pray for her.
Julie
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Let me clarify that she wasn't driving. Her husband was. It was an 8 a.m. Appointment and she's about 90 minutes away on a good day. She's always late. Always. To everything. So she probably left late and she wouldn't tell me this because I would've been upset with her to be so cavalier about this appointment.
So, yes, I agree Stephanie. I don't know how to still stay close to her in spirit when I totally disagree with her decisions. My sisters mother in law did the same thing. She chose homeopathic means and died two years later when they actually diagnosed it at stage one. ONE!
I feel like I put myself out there, I offer everything and do the research, pass on the info, reach out daily and we laugh and i share what's going on, but she's quieter. I'm a personal type person. I give my shirt and I'm there and vulnerable. I've been hurt, yes, but Its the way I'm wired. She's not used to having a close friend, she keeps things closed up. I try to bring her out but it's like prying open a clam. Her son is the same way and my daughter (who's dating him) is really struggling to make him open up more. A family trait I guess. She's very thankful to have me as her friend, and she listens to my opinions, but the bottom line is that she will choose what she wants to do. Now I have to let go. I have to learn to distance myself because really, maybe I'm not that friend that she is to me. There are always things that she doesn't tell me. And I the opposite. So I do need to step away. Because it's going to hurt way too much.
I just finished "When Breath Bceomes Air" and I don't think I'm going to share it with her. It might be too hard for her. She's not that strong. But it amazed me how the author, like all of you ladies, fought with everything he had, tried anything out there, to survive. To beat this.
She says it's all in Gods hands now. I think she's given up and saying it's all up to God now, which is a whole different conversation.
I will be her friend because it's hard for me not to be there for her. And it's up to me to start letting go.0 -
Kinda bummed tonight. I had a bronchoscopy last week. My pulmanologist said that due to the placement of the mass, there was a 50/50 chance that they could get a sample. When I woke up in recovery the 1st question I asked was whether they could reach it. I was relieved to hear they had.
I had a very long weekend worrying over the results. I got the call this afternoon that the sample wasn't large enough for proper testing. They could tell that it's cancer but could not say if it's breast or lung cancer.
I am going in tomorrow to meet with another doctor to discuss a needle biopsy. When we first talked about a lung biopsy I asked if they could just do a needle biopsy. They said it was too risky. But now they say it's the best option. I'm not looking forward to this
I feel like every test, treatment, or procedure I have has some sort of complication. Seriously, I end up in the hospital or in extended recovery far too often. Want to get off this ride!
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Noni,
I just noticed that you, like me, went from Stage 0 to Stage IV with many years in between. So much for the "early detection" myth right? And there's a big movement to stop calling DCIS "cancer" and take more of a "wait and see" approach. I don't think they should talk about taking DCIS less seriously until they figure out who is likely to become metastatic after DCIS. We were both diagnosed in our 30s and I have heard that younger women are more likely to become metastatic.
Hugs, Susan
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Hi Susan, I have a friend whose wife was diagnosed with Stage 0 DCIS. She has decided to follow the "wait and see" approach. I have tried talking to him so he will talk with her...but she is set on the "wait and see" do nothing right now. It scares me
. But I guess I have to honor her decision.Julie
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So many people questioned my decision to have BMX for 'just DCIS'. I didn't want to take any chances. If tamoxifen had been offered to me at that time I would have taken it.
Many things have changed since then treatment wise, but I am shocked that people still downplay DCIS.
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my recent cat scan showed growth on two nodules but rest is "fine" according to verbal report. Waiting to see full written report. Original biopsy was pos for cancer on the hilar node. Could not biopsy nodules ( at least 7 of them) due to size and think location. Two oncs said def think nodules are cancer also. Has anyone had growth (2 millimeters each) on nodules but decrease on lymph nodes ? Not sure what to make of this. Mo wants to scan again in two months and if larger says we will have to biopsy them. I am on letrozole and Ibrance. Hormone pos and hers 2 negative based on lymph node.
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Hey Singlemom....how big are the mets? A PET scan would show if they are cancerous but I believe a PET scan does not detect anything smaller than .7mm. I have had increase on nodule and decrease on lymph nodes show in a PET scan. CT scans don't really work on me....
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My nodules are too small for Pet. The concern now is why are they getting bigger if nodes smaller. Different pathology? I was hormone pos on node but could be different on nodules.......or as I am hoping was it a misread ? Did you find out why you had decrease/increase with nodes and nodules
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No I didn't question it. I guess I figured it was no different than the chemo on lung mets and not on liver mets. But now that you bring it up.....I will check with my ONC when I see her this Friday.
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I started having shortness of breath and my PCP sent me for an x-ray. They noticed something funky on the x-ray so she referred me to a pulmonologist who ordered a CT scan w/o contrast. The CT scan found bi-lateral pleural effusion, which when drained proved to be due to lung mets. At that time the CT also mentioned the AP Window node as being enlarged but no nodules just varied density. 2 CT with/contrast later, the AP Window node is normal, but they have found a couple very small nodules. So in answer to your question, yes things do change. In my case the nodules are probably things noted as varied density that have now gained what they call "foci" and actually joined to become nodules. My MO pays much more attention to my TMs than minor changes to my lung mets in the CT scans.
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This might be far-fetched and far away for many with lung mets, but it's interesting to know about:
Laser Resection Technique and Results of Multiple Lung Metastasectomies Using a New 1,318 nm Nd:YAG Laser System
Axel Rolle, MD, PhD,1* Arpad Pereszlenyi,1 Rainer Koch,2 Beat
a Bis,1 and Barbara Baier1
1 Department of Thoracic and Vascular Surgery
Coswig Specialised Hospital
Center for Pneumology and Thoracic Surgery
University Medical Center
Neucoswiger Straße 21
D-01640 Coswig/Dresden, Germany
Tel: +49 3523 65102; Fax: +49 3523 65103
e-mail: dr.rolle@fachkrankenhaus-coswig.de (Axel Rolle)
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hi all
I'd really appreciate some feedback if someone has had similar secanrio - and what it may be. I'm panicking a bit as I suppose we all do when we are waiting for doctors.
My Onco took me off hormonal treatment just before Xmas. In February I developed a cough - which I thought was a cold. It got a bit better - sometimes a bit worse. Now I've had it for over 3 months. Before this I felt I was loosing my voice if I talked for too long or I developed a husky voice which a few said was quite sexy lol. I also had some trouble swallowing - it felt like I was getting a sore throat. I also have a gastric band so I had it loosened and that seemed to help a bit with that.
I've had an X-ray but that was clear and taken a double course of avery strong antibiotics and steroids to no avail. I've always felt like chemo damaged by lungs during treatment almost 5 years ago. I've learnt to live with it - like someone has but a rubber band around my ribs so I can't expand my chest to get a deep breathing without having to yawn. When I do get a deep breath it feels like I'm breathing in icy air on a winters day. I had three initial idc - but only one showed on scan at that was just be cause it looked out of place! I had one of these cancers detected when I had a mx post chemo which wasn't visible on MRI even thought it was 8mm. Thy were all mutinous.
I have now done a CT scan with contrast. They have identified a number of large lymph nodes but no masses in my chest. Nodes are 1.3 up to 2.2 cm in size - so they are not small! Radiologist suspects NHL. I think I can hear a raspy sound when I breath. Right side lung function is slightly less than left - and nodes are mainly rhs side and centre on mediastinal and hilar and pretracheal. I also have neuropathy on trigiminal nerve which means my face feels slightly mumb on one side. I been having MRIs for 2 years now to monitor a hyper intensity near the train but No change with that issues during that time fortunately.
I now have to wait 6 weeks to see a pulmonary specialist and my Onco has taken the month of June off. I'm not a m ducal doctor but I'm crying ni dent it's either sarcoidosis or potentially mets. I'm crossing my fingers it is just a cold virus. Has any one had similar and it was confirmed,ed as mets? Can some sort mets not show up at all until the lamp nodes are enlarged? Really appreciate some feedback here whilst Iponder if I should get my gp to give me a scrip for sanex
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Hi Keg,
Welcome and good to meet you at your first post...
It sounds like you've had a lot going on that's hard to sort out.
We're all learning to be experts at living well with our own cancer and supporting one another in living with theirs.
Unfortunately, I don't think we've branched into diagnostics yet.
Yet, if you have indications of NHL, I don't think a six-week wait is a good idea. Can you find someone to help you move the system along a bit faster?
Keg, you may get more, better responses if you cross post this here:
If you are NOT stage IV but have questions please post here
https://community.breastcancer.org/forum/8/topics/...
warmest healing wishes, Stephanie
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Keg, I had symptoms similar to yours, coughing, shortness of breath, wheezing, and tight feeling in my ribs. It turned out to be a pleural effusion (excess liquid in the membrane (pleura) that surrounds the lungs). They should be able to see that on the CT scan however, which is how mine was diagnosed.
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Hi Keg - Which hormonal treatment were you on at Xmas? if you have having shortness of breath or feel like the worst flu, have your lungs been checked for fluids; eg pleural effusion? That is how my cancer was detected on Xmas eve. I'd get in to see onc pronto if they suspect NHL, and ask about Ibrance/Faslodex to help get rid of lung tumors. I had one nodule in left lung, now gone. But my cancer is still in pleura.
Still on Ibrance/Fas round #6. Please ask lots of questions, you deserve answers. Cive - what medicine are you on now? Steph has so much research at her fingertips - as do many ladies here.0 -
Hi Keg, I am sorry but I don't know what NHL stands for.
I had trouble breathing and x Ray picked up nothing. Cat scan showed enlarged hilar node and a number of nodules. Biopsy on node was pos for mets. Who ordered your cat scan? Can they get you insooner with pulmonary or a covering oncologists?
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NHL = Non Hodgkin's Lymphoma
Different diagnosis & treatment options than MBC.
So many possibilities to follow up on, Keg.
Please don't wait 6 weeks...
your new friend, Stephanie
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thanks ladies I really appreciate your feedback.
My cancers were all ER and PR + 98% and her-. I had double mastectomy and recon. Very slow growing cancer with0-1 mitosis. I've probably had the cancer for well over 15 years my Onco told me. I was on zoladex with arimidex for 3 years with about a year of tamoxifen initially.
The X-ray and ct did not shown any lung issues - just the enlarged nodes - it seems a lot of them and mainly on the right. Would the X-ray or CT not show the plural infusion.
My mum had sarcoidosis so it could be that but my ACE results are low - if seen a rhuemologist - but he didn't identify anything. My ESR has been creeping up since chemo - it was elevated before diagnosis and recently my ALP is also borderline elevated. I'm seeing a Chiro for back pain as well between spine and shoulder blade in the T5/6 area. My spleen is also on the larger side of normal.
My GP is going to do a call around to see if I can't get in early - it took three months to see the neurologist - so I am crossing my fingers. My Onco is away - but his receptionist is good and she's also doing a call around.
I think NHL is unlikely but I wouldn't rule out mets as my cancers were very deep and I don't think the sentinel node biopsy they did took that into account.
Is it not unusually for bc to not show up on X-ray and MRI - I had the right off prophylactically as they couldn't be 100% sure it did have cancer either - it didn't but it did show some cells were changing to dcis. Dcis was extensively through my left.
So hopefully Monday will bring some news about an appointment this week.
It's great to see such strong and well informed people in this group - sometime I realise our doctors are just humans too with a bit of training.
Thanks again k
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lalady - I'm on Femara and Ageva (for bone mets). I opted out of Ibrance because at my age I'm more interested in quality rather than quantity and it seems to be working, my tumor markers have dropped 80%.
Keg1971 - The pleural effusion very likely would not show on an Xray, mine never has, but it should definitely show on a CT scan which is how mine was diagnosed.
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hi Cive
Just wondering if there is an suv max on a pet scan that increases the chance of cancer. I've now had a pet scan and it's shows more activity then the ct. still no lung involvement but suv max in my nodes of 16 and intramamory node is also affected. Going for an bus biopsy as Onco says could be mets, lymphoma or even sarcoidosis as results and blood working support any one of these! Feeling a tad confused. Ke
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Don't know much on PET scans since I always have CT scans with contrast, so that's what I've researched. There are protocols for the amount of radiation they use. My lung mets were found with a CT scan without contrast that showed the pleural effusion that was caused by my lung mets.
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hi ladies.
I am just about of two years out of chemo for stage 2b cancer. Following chemo, I had radiation as well.
I am starting to notice a wheezing type cough or "catch" that sounds like a tad bit of fluid when I cough or occasionally talk or laugh. I don't necessarily feel breathless. How slow did symptoms come on for each of you. Terribly afraid to think about this being lung mets or start investigating. My life has just returned to normal. I see the oncologist's nurse practitioner at end of July
I appreciate any insight.
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Hi Kazzy....I had no symptoms, no cough or wheezing. Annual checkup with a CT scan found the mets to my lungs.
Julie
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Keg, I was told an SUV of 2.5 is indicative of cancer but a lot of different things can make the SUV rise.
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No symptoms for me...found looking for infected implant. Brenda
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Hi Kazzy,
My early lung mets were nearly asymptomatic, just a slight reduction in breathing capacity. With later pleural effusion (fluid between the lung linings), breathing became more difficult and I eventually had a feeling of heaviness and slushing in the lower lung. Never any wheezing though.
There are so things your symptoms could indicate - from the most benign to a cancer recurrence.
Ask your oncologist's nurse for a referral to a pulmonologist to do a thorough investigation.
Another resource to consult is this bco topic especially for those with earlier stage breast cancer concerned about recurrence:
https://community.breastcancer.org/forum/8/topics/783594
Good luck in your search for answers.
And maybe your symptoms will resolve on their own and you can stop your hunt soon.
Healing regards, Stephanie
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maedchen, I am so sorry you find yourself here especially at such a young age. I can only repeat what my doctor said to me when I had the return of my cancer with lung mets. He said I was lucky because there are lots of treatments for ER+ breast cancer and more being brought to the market all the time. I was coughing a lot when they found my lung mets but as soon as I started treatment with Ibrance/letrozole and also used cough syrup with codeine, my cough improved. I cough now from allergies. I am also short of breath because my heart was damaged from chemo 25 years ago but I'm still here and expect to be for a long time and I think you will be too. You might ask your doctor for some strong cough syrup to help.
Sending healing wishes,
Faith (in the future
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Maedchen, I have had lung mets for 1 year and 9 months. I had numerous tiny scattered mets in both lungs. They were stable for a year on Arimidex before they started to progress. Now they are shrinking and disappearing on Faslodex and Ibrance. I also had a cough but my oncologist said the mets were too small to cause any problems including a cough. They said it was more likely due to post nasal drip or acid reflux. I don't think I have acid reflux but started taking omeprazole and the cough has mostly stopped. I have noticed I am very sensitive to aerosol sprays so I stay away from them. Especially cleaning chemicals and such. My lungs seem the same as they always were..no breathing problems at all.
Have you done anything about your ovaries? I know there is a shot called lupron that will shut down your ovaries because you do not want any estrogen in your body. Or at least very little. Fell free to reach out to me anytime with any question. You can sent me a friend request and send private emails if you like.
I'm sorry that you find yourself here, but there are so many great ladies here with lots of help to offer. You have lots of treatment options for ER positive breast cancer. Many women are living for years with breast cancer!!
Hugs,
Robin
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