Symptoms of stage 4 lung cancer - diagnosed 1 month ago

Posted by stramont @stramont, Oct 21, 2023

I have Stage 4 lung cancer and A-Fib. I’ve been blaming SOB, fatigue, cough, balance issues on A-Fib. During tests at Mayo for Cardiac Ablation, a chest x-ray showed mass in lungs. Diagnosis Stage 4 Sept. after CT scan, PET scan, MRI Brain scan, Bronchoscopy Oct. 13. Scheduled consult 10/24 for treatment options. Since diagnosis I now have pressure in back and chest, no energy, shakiness, loss of balance, and loss of voice. I was hoarse 2 days b4 the bronchoscopy but it’s advanced to loss of voice. Is this a natural progression and does treatment relieve symptoms? Any suggestions to restore my voice? Thanks for any insights.

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Oh @stramont what a month you’ve had!
First this is a wonderful community to provide support and sometimes insight into what others may have experienced that is similar. And there are awesome mentors who can help with what questions you may want to run by your treatment team, or just be a friendly shoulder. I’m sure one of them will see your post soon and respond.

I had a small mass removed from my left lower lobe in late May and I had a Bronchoscopy before the surgery to mark the mass with dye. Ultimately it was found and proven to be malignant and I had a lobectomy of that left lower lobe. I can’t speak to what’s “normal” or expected after the Bronchoscopy but I had hoarseness and soreness afterwards. I didn’t lose my voice completely but I instinctively knew not to push it. I live alone so can go long periods without talking. I just drank herb tea with honey and it seemed to help. I also sucked on an ice cube periodically because I wasn’t sure whether cold or warm would be best. Between them it only lasted about 3-4 days.

My overarching advice is to be assertive and ask your doc or his team for input. This is a time when the priority needs to be YOU! Yes, we will gladly give you virtual hugs because to one degree or another, we’ve all been there - or are there - and know how important it is to get input.
So you said you expected to hear a treatment plan on the 24th. Do you know yet what kind of cancer you have? I wasn’t sure if they did a biopsy with the bronchoscopy.

I hope you stay in touch here when you have a better idea of what you’re facing. There are a lot of people with loads of experience to help you make sense of what I’m sure is a jumble of thoughts and facts.

Warm, healing thoughts headed your way!!

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@pb50

Oh @stramont what a month you’ve had!
First this is a wonderful community to provide support and sometimes insight into what others may have experienced that is similar. And there are awesome mentors who can help with what questions you may want to run by your treatment team, or just be a friendly shoulder. I’m sure one of them will see your post soon and respond.

I had a small mass removed from my left lower lobe in late May and I had a Bronchoscopy before the surgery to mark the mass with dye. Ultimately it was found and proven to be malignant and I had a lobectomy of that left lower lobe. I can’t speak to what’s “normal” or expected after the Bronchoscopy but I had hoarseness and soreness afterwards. I didn’t lose my voice completely but I instinctively knew not to push it. I live alone so can go long periods without talking. I just drank herb tea with honey and it seemed to help. I also sucked on an ice cube periodically because I wasn’t sure whether cold or warm would be best. Between them it only lasted about 3-4 days.

My overarching advice is to be assertive and ask your doc or his team for input. This is a time when the priority needs to be YOU! Yes, we will gladly give you virtual hugs because to one degree or another, we’ve all been there - or are there - and know how important it is to get input.
So you said you expected to hear a treatment plan on the 24th. Do you know yet what kind of cancer you have? I wasn’t sure if they did a biopsy with the bronchoscopy.

I hope you stay in touch here when you have a better idea of what you’re facing. There are a lot of people with loads of experience to help you make sense of what I’m sure is a jumble of thoughts and facts.

Warm, healing thoughts headed your way!!

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Many thanks for your timely response and encouraging words and advice. I am seeing my oncologist Tuesday with my son/ daughter-in-law for treatment options. In good spirits so far. Five kids with lots of love and support.

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That is great. But please do stay connected.

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@pb50

That is great. But please do stay connected.

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For sure!

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@pb50

That is great. But please do stay connected.

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Yes, a biopsy of both lungs. Non-cell carcinoma in both. Four lymph nodes sampled with one positive and three negative.

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@stramont

Yes, a biopsy of both lungs. Non-cell carcinoma in both. Four lymph nodes sampled with one positive and three negative.

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Hi @stramont, I suspect you've heard more information, though it's easy to lose the details. 85% of all lung cancers are non-small cell. There are subsets of that category. For example, I have the EGFR mutation, Exon 19. I asked my PA to write it down when she first told me. That additional information determines my treatment of Tagrisso. Without the EGFR mutation, there are several other treatment options.

Bringing someone along to your visit is a great idea. Learning that you have cancer is an emotional experience, no matter how many times it happens. For now, be very careful with your balance. I don't know how old you are, but I had brain surgery at 60 to remove my metastatic cyst. As a former backpacker/hiker, I refused to walk with the recommended cane. I walked with my trekking pole because old people use canes, and athletes use trekking poles. 🙂 But I did understand: falling - bad. You have enough going on without adding the results of a fall, so be careful. I like a tablespoon of honey and a tablespoon of lemon juice, and fill the cup with hot water when I have a sore throat/hoarseness. The lemon clears phlegm and the warm honey water is soothing.

We're pulling for you. Glad to hear you have supportive family around.

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@stramont, I agree wholeheartedly with the suggestion @flusshund made to have someone take notes in your treatment discussion this week to capture terms and recommendations. As I said previously, there are a lot of very smart and informed people here who don’t give advice as a rule, but can provide clarity around treatment approaches.

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@pb50

@stramont, I agree wholeheartedly with the suggestion @flusshund made to have someone take notes in your treatment discussion this week to capture terms and recommendations. As I said previously, there are a lot of very smart and informed people here who don’t give advice as a rule, but can provide clarity around treatment approaches.

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I so appreciate that suggestion. Fortunately, my son/daughter-in-law will be with me and I will assign them that task. So good to receive this input!

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@stramont

I so appreciate that suggestion. Fortunately, my son/daughter-in-law will be with me and I will assign them that task. So good to receive this input!

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Also, it is very reassuring to have this connection while in this unfamiliar terrain!
To Matthew: I’m 80 (good Lord - that sounds ancient!!). I also walk with poles. They were my go-to when I was fitness walking regularly in my neighborhood.

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Great solution to lean on your children. Believe me, by the time you get to your car, you won’t remember anything you want to because it’s all an unfamiliar language. 😁. I’m 73 and it’s doubtful I would remember it anyway!

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