CT and Lung Nodules
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margecandoit,
Great news about them being small. I hope it stays that way, but make sure you have them scan regularly.
maggie15,
I am glad you did not have any pain with this. Hopefully you will not have to do this again too soon.
So I did have surgery on Friday and they removed a bunch of lymph nodes around my lungs and farther away. The one know cancerous node was the size of a golf ball. The doctor also removed a lymph node/part of thymus to send off and he did cut off a piece of my lung that he said looked different compared to the other areas. The surgery was not too bad, but there is some issue with my laryngeal nerve so I cannot talk very well. Also started Ibrance, Faslodex, and Zometa. The Zometa caused an issue with my right eye so I have been on drop every hour. Other than that everything is going well.
Thanks for checking in
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@bookworm14 thanks for keeping us posted on the lymph node removal and other biopsies.
Sending hugs to All!
Your Mods1 -
bookworm, It's great that they got that golf ball sized node out. My pulmo is of the opinion that lung resection is the best way to eliminate any suspicious tissue so it's good that the questionable area was removed.
Laryngeal nerve damage is a pain but it often resolves over time. I had trouble talking for several months after thyroid surgery. I ended out getting speech therapy which helped. I can no longer sing (I don't think the world is much poorer for that) but I can talk OK as long as I use the tips I was taught.
I'm sorry that the Zometa caused eye issues but I'm glad you are tolerating the Ibrance and Faslodex well.
I've been following my post RFA diet and have had absolutely no pain. I was tempted to eat some good food but I figured I better follow the rules since I might cause damage I couldn't feel. I'll have another endoscopy in a few months to make sure they got all the bad cells.
Thanks for the update. Hopefully the eyedrops will work quickly.
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bookworm- wow a golf ball size did they know the size when you went in. I am glad they did the surgery. Is the meds your on chemo or are the pills you take?
Maggie- glad all went well. I think it’s best that you suck with the diet. It’s hard I am sure.
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margecandoit,
No one suspected how large it would be. The doctor said he had to peel it away from surrounding tissue and veins.
On Ibrance, Faslodex, and Zometa for now
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well, got the news on the pathology of the nodes and the small section of the right lung and it is not good. Numerous lymph nodes are positive for BC including some that were biopsies in July, but the dissection took the whole tissue to examine. The small section of the lung was taken out because the doctor saw some changes that he thought was from infection, but it is confirmed to be BC. He did remove some nodes from the left side due to size and how close they were to other nodes, and those were all clear. It appears it is all in the right side, but now most of those nodes are gone. I don’t know it this changes treatment, but they will tell me next week when I see the doctor. Hopefully the two weeks of Ibrance did some good as I had to stop on week three for my surgery and going into surgery he 7 days off for now.
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Oh bookworm, I wish the news were better. You hadn't been taking Ibrance very long before the surgery so maybe it is working. If there is some other treatment the doctor feels would be more effective you can switch to that. I'm doing OK with essentially one working lung (my left) so hopefully your left lung will stay clear. Cyber hugs and hopes they find that magic bullet for you.
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maggie15,
Thank you. Maybe it can stay clear m…fingers crossed. I am very thankful that he did remove that section so we know. Still a big change from thinking only one lymph to this. I have an appointment next Thursday so that should give him time to decide if treatment changes
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bookworm. I am sorry to hear that. I can’t remember had they biopsy your lung before and it was negative? I am glad they got it out.
my Dr does tumor marker and they been slowly rising and now it’s tied with the tied highest it has been and that’s when I still had cancer in my body. Do you guys to timer marker. My marker are still in normal range though and my Sinatra came back negative.1 -
Hi margecandoit, My hospital doesn’t do tumor markers. They seem to be predictive for some people but not for others. It’s good that your markers are still in normal range (hopefully they'll stay there) and your Signatera test came back negative.
Hi bookworm, Did your MO change your treatment or keep you on Ibrance? I hope you are doing OK whatever meds you are taking.
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Sorry for the delay in responding. I’ve been dealing with some issues from surgery and then we lost power with Hurricane Francine! I hope you ladies are doing well!
margecandoit,
My doctor said the markers are not always consistent and do not work with some people, but he still does them. They say that those markers can increase with stress and inflammation as well. It’s all just a crapshoot I guess.
He said the Signatera test is a wonderful advance in the cancer world, but he does not like to use it because it is not really up to par to test for BC. He did say he would do it if it made me feel better. I’m glad your test came back negative.
My tumor markers were still normal at 15, but they always stayed at 5-6 for four years. I asked about that change before the biopsy, but he said he was not worried. He said they do them, but it is one tool to use. They never biopsied the right lung as they were only ever worried about the left.
However, the cancer never showed up on CT scans and only showed the one lymph node lit up on PET so nothing really caught it until they went in for surgery.Maggie15,
Keeping the same treatment as the Onco is hoping that since the majority of the cancer was removed (fingers crossed) that the meds will do their job well. I did ask him how are we supposed to keep an eye on this with scans and blood work missing so much…..his answer was do the scans and hope they pick up stuff when I progress and he said ANY issues require me to call him.
During the surgery the zinged my laryngeal and phrenric nerve so still having some issues talking and breathing, but getting better daily. How are you doing?0 -
Hi bookworm, Glad to hear you weathered Francine. It’s difficult when the standard scans and tests don’t find things. I sympathize since my bc was diagnosed by an oral surgeon, my dentist discovered radiation had caused my excised goiter to grow back and I used a radiologist’s description of my chest CT and google to figure out that I had RIPF. All you can do is follow the treatment plan and hope for the best. Your MO seems to be keeping a close watch on things.
My last chest CT showed the tracheal deviation is much worse even though the thyroid didn’t grow that much over the past year. I’m seeing an endocrine surgeon at the end of next month for an opinion. Hopefully your laryngeal nerve issues will continue to improve and your breathing will get easier. If the progress slows it might be useful to see a speech therapist. Hang in there!
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maggie15,
Will they be removing the thyroid to help with the deviation? The MO is definitely keeping a better watch on things now. Keeping fingers crossed for a good scan in November
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Hi bookworm,
My endo thinks they should remove the thyroid (it would be a repeat surgery five years later.) My pulmo thinks the pulmonary fibrosis could be contributing to this by causing unequal chest cavity pressure. I'm wondering if they could do radiofrequency ablation on the biggest nodule but from what I've read there are contraindicatons for that in my case. I feel like waiting until things get really bad again; levthyroxine has some bad SEs, a repeat surgery is much more likely to have complications, and I wonder if I would need yet another surgery 5 years down the road. My first goiter was caused by pregnancy and took a long time to grow big enough to fully compress my trachea. The first surgery left a 1 cm strip of thyroid which preserved two parathyroid glands and left me euthyroid. The fast regrowth was caused by radiation scatter. My RO was reluctant to admit this but couldn't deny the radiaiton lung scarring pattern and figured I was hypersensitive to rads. I'll have to see what endocrine surgeon has to say.
I hope that Ibrance is treating you well, your voice and breathing are improving, and you have good scans in November. Thanks for keeping in touch!
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bookworm thanks for getting back to me. I am glad you are feeling better. Hope for clear scans in Nov.
Maggie wow you been throug a lot.
Schedule my mammagram in 4 weeks.
It’s so good to hear and keep in touch with you guys.3 -
I had my chest CT scan on 5/12, and the follow up with Thorasic surgeon 5/19.
I reviewed the results on the patient portal with hours of the CT - stable, no new nor enlarged nodules. All good news.
On Monday the dr pulls the scan up and reviews it with me. He was mentioning each nodule, when it hit me more were in the right lung. So I told him in my head I thought more were in the left and I thought from scatter radiation. He said it could be from asthma, infection, even reflux.
I told him I’ve got reflux bad - in fact, after eating lasagna the night before, I pretty much slept sitting up. And that was after taking a chewable Pepcid. (On top of my morning omeprazole) Fear of acid burning the back of my throat kept me sleeping quite elevated.He said I do have a hiatal hernia, which I read on the first CT notes, and it could account for the scaring from acid inhaled into the lungs. He prescribed me famotidine, which is what Pepcid has in it. Caremark is filling it now. He also let me change to a yearly CT vs every 6 months.
If this works, it would be so nice not to be woken from a dead sleep as acid hits the back of my throat.
My thyroid nodules get rechecked in October via ultrasound, but I do see the endocrinologist on 5/29.
I’m hoping you all are doing well, with good scans.
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Cindy, Good news that your lung nodules are stable. Aspirated acid from reflux makes sense as far as right lung damage goes. I also have a hiatal hernia. My pulmonologist told me that rads injured my right lung so much because silent reflux had already caused damage. The famotidine should help. I hope your thyroid nodules are behaving.
My last chest CT showed more fibrosis in the right lung but not much change in the nodules. My pulmonary function tests were worse. I have to go back and redo them in six months.
Last month I had radiofrequency ablation of my largest thyroid nodule since the increased tracheal deviation left less than 40% of my airway open. It took about an hour and I was awake to ensure my vocal cords were OK. The recovery was so much easier than from my previous five hour thyroidectomy. It will take up to a year to see the final result but the surgeon is hoping the nodule will shrink to half its size. My first follow up is Friday.
My hip lesion is stable (yay!) but my liver enzymes were sky high on a recent routine blood test. At least that explains the past eight months’ fatigue and insomnia with no obvious cause. The whole gamut of tests was done and the current guess is radiation or drug induced liver injury. I see a hepatologist in July.
I second Cindy’s wish for good scans for all.
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Good to hear from you guys. I go in 2 weeks to my onco and go to see about a ct scan. My ribs been hurting when I sleep on that side.
I was wondering how bookworm is doing.Marge
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Marge, Thanks for checking in. I was wondering how you were doing. I have had rib pain intermittently which seems to be a SE of rads. A couple of years ago I had a temporary nerve block of the right intercostal muscles so I could breathe. Thankfully I didn't need a permanent one. I also had chostochondritis show up on an xray of my non cancer side so hopefully your rib pain has a cause that is not serious. I hope your onco appointment goes well. I have one tomorrow.
@bookworm14, I second Marge's sentiments. I hope you are doing well and have minimal side effects.
May everyone's lung nodules and other issues improve or remain stable.
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Hi Ladies!
Sorry for not checking in sooner. It has been a tough 2025 so far so I have been just quiet. I lost my step father late January so I have been trying to help my Mom. Scans and Signatera were going well until confirmation of rib and iliac metastasis this month. My March scans showed a small area on my left rib but the radiologist said possibly trauma and Signatera was 0.27. This months PET showed higher uptake in the rib and a new spot on the iliac with suspicious for metastasis and new Signatera shows 2.37. Oh and I found out I have the PIK3 mutation as well. Good news is the lung nodules that were thought to be cancer are not getting larger and the uptake has reduced
Maggie15
I am so glad your hip lesion is stable and I hope your recovery continues to go well!
Marge,Sending positive vibes for your appointment to go over your CT!
cindyny,Stable is wonderful news!
I hope all of you wonderful ladies are doing well and any upcoming tests, scans, and/or surgeries go well for you!
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@bookworm14 Condolences on the loss of your step dad, but it sounds like you are such a good daughter to look after your mom. Really sorry about the possible progression, but the PIK3 mutation means you have treatment options, from what I understand.
These nodules are so annoying. I have a 9mm mixed nodule that has been stable for almost two years now, but then I had a 3mm ground glass nodule pop up that resolved on the next scan but lo and behold, another 3mm solid nodule appeared. I just hate the guessing game.
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tougholdcrow,
It was tough. My mom relied on home a bunch and it was such a shock. She went to wake him up and found him in bed. Nodules suck! I always hate the waiting game so I feel for you on that!
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Bookworm, I’m sorry to hear about your stepdad. Supporting your mom through the shock and the many things that need to be done takes a great deal of time. I’m sure she appreciates your help.
It’s good that the lung nodules are stable but I’m sorry about the bone progression. I hope that treatment for the PIK3 mutation can keep that at bay.
Glad to hear from you.
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bookworm : it’s good to hear from you. I am sorry that you had new stuff come up and the passing of your step dad. Hopefully your new tumors will become more stable. I go to see my onco on Friday but I haven’t had a CT scan am hoping he will do one since it’s been over a year since my last one. I did my blood work on Friday and signatara was one of them. All mine has been negative so that’s good. I found out that I have 3 mutation and one of them is the PIK3CA I also have the TP53 and KARS. I have learn a good amount about my tumor so that been a learning experience but my Onco doesn’t care about it. For me it was good to know that I have both mutations of triple negative and ER positive. So I know it was important for me to take my letrozole.
tougholdbird sorry you in the lung nodule wait.
all take care,Marge
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Marge, I’m glad the blood work was good. Hopefully your MO appointment goes well.
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Hi all,
Went to my Onco appt and he agree to do a CT of my lungs cause it’s been a year. I had to ask though cause he didn’t bring it up. So I am waiting for a call to set it up that Ct. Hope all of you are doing well.
Marge
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Hi Marge,
I'm glad you got that appointment. I figure it is much safer to be under surveillance than have something creep up unnoticed.
I also hope everyone else is doing well.
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maggie15,
They are coming out with so many treatments now that are specific to these mutations! Officially DX of meta to bones with my Signatera coming back at 2.3….it was 0.27 in March. Starting Itovebi next month and I will be the first of his patients on it. He was super excited about this drug being approved. Also, discussing with rad oncology about radiating those spots as well. Hope you are doing well!
margecandoit,I’m glad your doc listened and ordered that scan! Those mutations open up a lot of possibilities for treatment! This new drug he is starting me on almost doubled the time for progression free time in the trials. Only downside is that most people end up with high blood sugars and have to take meds for that. I can deal with that for more time! Keep us updated on those scans!
Have a beautiful rest of the week and weekend lovely ladies!
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Bookworm, Itovebi has been very successful in clinical trials. When I was on high dose oral steroids for six months for my lungs I had to use insulin to manage the blood sugar spikes but it was doable. I hope this drug works well for you.
Marge, I hope your CT shows stable nodules.
My six month wait for a referral for cataract surgery resulted in a referral to a retina specialist. The ophthalmologist wouldn’t say why since he wasn’t sure what the actual problem is. That, the hepatology appointment and my MO sending me back to the RO make me feel like I’m playing wack-a-mole. I hope I’m winning.
Cindy, I hope your endocrinology appointment went well. May everyone’s lungs continue to behave.
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Well I finally got my CT scan schedule. It’s sept 2 took so long to get it all figured out I am also having my mammogram done and ultra sound the next day. Lots of scans.
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