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Waiting for lung biopsy results......


melissakp4

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Hi there,

Sorry this is long...

This is my first time posting to the board. I am 37 years old and about a year ago, my pc doctor did a routine cxr. They found a left upper lung nodule in that cxr (about 15mm x 15 mm). So, a CT was ordered. In the CT, they still saw the lung nodule and said it was 15mm x 15mm, they also found a complex cyst in my left kidney. The lung nodule didn't have any calcification, so they ordered a PET scan to check on that and the kidney as well as an ultrasound for the kidney.

The PET scan supposedly came out negative for malingnacy, with a level of 1.1 - 1.5 on the lung nodule and 1.7 on the kidney. Anyhow, several tests later (including an MRI of the kidney) they wanted me to still see a nephrologist on the kidney, and when I did he was gung ho to do an operation because he said the PET scan doesn't count for much with Renal Cell Carcinoma. Almost three weeks ago (Feb 6th), I had a partial nephrectomy. It turned out that it was cancer (Stage I, grade II), but encapsulated. Now the Dr. and I are more worried about the lung nodule. I have never smoked, but I did some reading and apparently the adenocarcinoma which is the most common non-smoking cancer has a very low metabolic rate (so the PET scan result may line up with this type of lung cancer) until it springs, and then the metabolic rate shoots up.

I went for a lung biopsy two days ago and am scared to death. I coughed up some blood today, which this was the first day I was able to cough without it hurting too much. That freaked me out, but I guess it's normal?

I have a two year old, and about two years ago, I moved to a new state to be near my mom so I could do a career change to nursing. I had just finished all of the pre-reqs and was supposed to start the nursing program in January of this year. I ended up deferring my spot so I could get the kidney surgery. I have done reading and it looks like if the lung nodule is cancer and it is related to the kidney cancer or vice a versa, my chances are not that good?

If it is cancer and they do a lobectomy, how does that affect one's ability to do outdoor activities? I am not really able to talk to anyone at home about it. My mom just starts crying, my son is too little to talk to, my fiance just says that we need to wait for results and that there is no point in crying now.

I'm so scared and it's so hard to be waiting.

Melissa

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Hi Melissa:

getting the biopsy was a good idea. I hope you get the results very soon. I am not an expert, but I think that even if it is malignant, it would be a separate early stage primary and would be curable with a lobectomy and chemo followup. Hopefully it is benign. I would think it is probably benign because the PET scan showed nothing and it is fairly reliable for nodules bigger than 10 mm.

If you have to have a lobectomy, you should be able to do everything you did before the lobectomy after 5 months or so.

Don M

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Melissa,

STOP what you are doing this very minute and take a very DEEP breath!!!! You have so much swirling around in your head, you need to step back a moment.

You will need to take one step at a time.....and your fiance is correct that you need to know what the results are from the biopsy.

You have a lot going on. You have found a wonderful place for info and support. Continue to read and educate yourself as much as you can. Be ready to advocate for yourself. Once you have all the facts you can continue to gather even more information. THEN you and your docs can decide just how to proceed. At that point you may want to consider getting a second opinion.

So.....welcome, Melissa. You should be hearing those results soon. Come back and let us know what they are. We will help you go from there.

Kasey

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I don't know if this will help you or not but my sister had a similar pet scan with similar light up numbers and I just got back from her thoracotomy (sp?)a half an hour ago and boy was I scared but it was not cancer. It turned out that the nodule (2 cm) was a caseated granuloma and she also had a hilar abnormality that lit up which also was a caseated granuloma-(the pet no.s were both around 1.9-2.9 and the pet scan said cancer til proven otherwise) - now she is in ICU in isolation while they determine whether it is tuberculosis (sp?) or not or what it in fact is but whatever it is it was not a malignancy. Praise the Lord.

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Melissa,

Welcome to the board even though I hate the fact you need to be on here..

I can't do anythign to help you with your fear right now except to say, I know exactly how you feel as does most everyone on here. And waiting sucks - even those of us who have been to the waiting rodeo before still go through the same thing you are going through right now. But, I hope the fact that you have found a group of people who feel the same as you, helps to alleviate your stress just a little.

In answer to the lobectomy question, I have had my right upper and middle lobe removed and no one would even guess. So don't worry about that- the fact that I'm missing 2/3 of my lung, doesn't have an impact physically, day to day.

Keep posting Melissa, you have found the right place to voice your fears and share your concerns..And please keep in mind, if it IS lung cancer, you CAN survive it.

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Melissa,

STOP what you are doing this very minute and take a very DEEP breath!!!! You have so much swirling around in your head, you need to step back a moment.

LOL - Kasey! Or should I call you "Grasshopper"? Next, we will move on to catching flies with chopsticks...

Now, since Kasey gave my normal advice, let's talk lobectomy. FIRST, you ARE putting the cart before the horse. But, to answer your question, I had one three years ago. I do whatever I want outside, and use it as an excuse to get out of things I don't want to do - it's not that I can't do things, just don't want to! LOL

Get your results, if it is cancer, shoot some questions on normal procedure, etc., but until then, I'm not going to feed your nightmares. RELAX, breathe, and assume that until you know any different, all is well. I received news within hours of my biopsy that it was cancer. I'm sure were the news of that caliber, you'd already know.

Take care,

Becky

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Melissa, good advice from everyone. Most of my left lung is gone from two surgeries and my lung fuction is at 99%. Also, I am older than you. I can do just about anything outside (walk/ran two half marathons after my first surgery and planning on another in October). It is very hard to wait, we have all been there. Just take it easy until you get results and then let us know how we can help you.

Take care,

Nancy B

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Hi Melissa, It is scarey situation but xanex helps. You need your rest. The spot is small, and if it is bronchioalveolar lc it would probably be slow growing. Plus you are young and strong, and a non-smoker to boot, so rest of your lungs are most likely very healthy. Even if the news is not good, you can get through it, so many of us have done it, you can too.

This is not to say my lobectomy was a picnic. It took me a long time to recover, but I can walk a 20 minute mile, 16 minutes if I have to. I do get short of breath if I go up a hill too fast or walk against a stiff wind on the beach, but then I'm overweight so to be expected.

I felt God was a bunch of boloney before I was dx'd, but at times like these prayer from friends can be very comforting even over the phone.

Keep positive thoughts and remember to pamper yourself, Barb

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Thank you all for your words of encouragment. I am really happy to have found this board.

I will be finding out the results this Monday. The pulmonologist's office had called me on Friday but I missed the call, so I am waiting the weekend. (maybe a hopeful sign, as I don't know if they'd do bad results via the phone, but you never know). I have an appointment with the thoracic surgeon to discuss things on Monday also. I had set it up when I got the biopsy by the suggestion of my pulmonologist.

I'll post when I find out the results. It's been a long weekend so far, but we are going to the Renaissance Faire tomorrow, so that will be a good distraction. I haven't tried an all day walk since my surgery earlier this month, so hopefully it will go well.

Thanks,

Melissa

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Hi Melissa,

Welcome, but sorry you find yourself in a situation to seek us out. I pray that your test results come out well and that there is not need to ever think of the word lobectomy again.

You have already been through so much, and I realize that this can be so scary for you especially when you think about your two year old.

I pray that all turns out well, and if the results are not what we wish for, I pray that they can treat whatever it is quickly and aggressively.

As far as your question about being able to do outdoor activity after a lobectomy, I know that for many people activity can return to normal. In fact, we do have one member here that has one lung and does cycle races. He's right up there with Lance Armstrong if you ask me, but he's doing it with half the lung capacity. I've heard that when you lose part of your lung, the other areas compensate for it.

Anyway, we are getting ahead of ourselves here. Prayers first for positive test results!

God Bless you

Carleen

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  • 5 years later...

It's a little scary that you are asking a question like this on a website. Who and where is the dr who did the biopsy and where and when is the follow-up. If you cannot afford to have this problem checked, please see if there is a free clinic in your area. If not, it appears you attend a school with medical training. Is there a doctor on staff there who can help you? Don't think anyone here would have the expertise to answer your question. Please get answers from a licensed physician.

Judy in KW

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  • 1 year later...

You sound like me when I was first diagnosed...scared, winded, full of fears and questions. Before surgery I took 7 pages of questions into the surgeon and he went through everyone of them with me. Yes, step back and breathe! Ask questions, you have found a wonderful group to talk things out with. I did have a lobe removed, and I do have restrictions because of it. Not everyone will. One step at a time...and do your research ☺ Wishing you the best possible outcome!

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  • 6 years later...

My sister just had 5 lung biopsies last week and got her “no cancer” results this am.   But the doctor also told her she has to wait 8 weeks “to see if anything grows” from the biopsies as he says sometimes it takes time for the pathology to show up. 

Has anyone ever heard of this with lung biopsies?

thanks so much,

Suzy

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Suzy,

No - you are the first to report this problem. Are you sure they are not testing the biopsy material for tumor markers or indicators for targeted therapy or immunotherapy treatments?

Stay the course.

Tom

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