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nikkala

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Hi, My name is Lisa. I am 32, I lost my mother to lung cancer when she was 41 also my grandfather to lung cancer when he was 68, my aunt to lymphoma when she was 47 and other grandfather to multiple myeloma at 75. Not a great family history... In April/04 I had a partial vulvectomy for carcinoma in situ of the vulva(external female genitals) Several years prior I had a hysterectomy for a diseased cervix. 2 months ago I ended up in the ER for severe chest pain which felt like a heart attack. A ctscan showed multiple lung nodules, several on the right lung and 2 on the left. "the largest nodule is only 6mm and has a spiculated margin, which is of concern for metastatic disease" That's what the report says. My Pulmo doc is not doing anything except waiting to do a followup Ct Scan at the end of Dec. In the mean time I am still having terrible chest pain and pain in my left shoulder blade. Does anyone have any input?? I am sorry if this is not an appropriate place to post about this and please let me know. Reading your posts is incredible. I was 21 when I lost my mom and the impact on my life remains a daily struggle. Thank you for your consideration.

Lisa

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Lisa,

First and foremost:

FIND ANOTHER DOCTOR!

If you are dealing with cancer, time is of utmost importance. Waiting until December for a follow-up CT, but nothing in the meantime? The tech that read your pictures seems to think there is something going on there - sounds like the tech is thinking "Big C". It was a tech reading an x-ray that put up red flags for my doctor...my doctor who would have no reason to suspect lung cancer in me per family history - your family history should be an eye-opener with what your report says...

Talk to your GP, get a referral to a thoracic surgeon for consult...see what it IS and form a plan of attack. If you are in pain, it's ridiculous for some man in a white coat to tell you that nothing is going to be done except a follow-up CT in December...

I strongly urge you to seek a second opinion...

Becky

PS Welcome to the family. Survivors of all kinds are welcome here.

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LISA

RUN, RUN as FAST as you can to another doctor! I dont have cancer, but it seems to me that you are not being treated for your pain, thats bs.....

You need to seek other treatment as fast as you can - dont let this doctor run your life - only you are in charge... seek another doctor - I agree with Becky on this one, especilly with your family history.

Angela

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Just echoing what Becky said. It is UNBELIEVABLE to me every time I hear of yet one more doctor wanting to "wait and see." I just wonder if they'd want their wives/daughters/sisters, etc., treated like that? Good grief.

2nd opinions are always good, they say, and this sounds to me like an excellent reason to get one ASAP.

Di

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some options for a second opinion might be:

thoracic surgeon to review the film, not the report, the film.

pulmononlogist to review the film. Sometimes they can perform somewhat noninvasive tests to help determine malignancy.

or a trusted cancer specialist if you have one dealing with you vulvular cancer. The surgeon? The oncologist?

I agree with the others.

Nothing wrong with a second opinion. Or even a third at times.

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I sure hope techs aren't the people routinely reading cat scans and xrays. I sure hope a radiologist is reading them. Or maybe not, lol, since maybe the techs have a lower miss rate than the radiologists.

I agree with the others, though I think the majority of Drs, sadly enough will agree with your Dr. Wait and see seems to be the current trend, especially if you're in an HMO plan--and the catch-22 is that without a referral from the "wait and see" Dr., you will have to pay for not only the second opinion but perhaps any tests that the new Dr. orders.

I hope you can get the answers you need sooner rather than later. I do know one thing, however: radiologists are prone to mention the worst case scenarios in their reports due to liability situations--and I am glad they do, or else who knows how long Drs would wait.

elaine

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Thank you all for your responses and kindness. I checked on getting a second opinion this morning and now by the time I get an appt with someone it will be time for my next ct scan anyway. It's scheduled for Dec 30. I will just wait for that and if anything has grown or multiplied I sure hope he will do a biopsy at that point. My nodules were only 3-6 mm. Is that too small to biopsy? Has anyone else had a biopsy done on such small nodules? Are they too small to be cancerous?Did you have any other symptoms? Everyday not knowing is making me crazy. I feel like a walking timebomb. Thank you all.

Lisa

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I was in my early 30's when diagnosed. I had NO true symptoms(the ones the doctors usually look at). Never smoked, no family history, no SOB, no cough NOTHING except shoulder pain. Just a bit now and then. But my PCP did an x-ray and then a ct immediately.

I guess my question to the doc would be WHY are we waiting that long? What is going to be gained by waiting? Does he think they will just disappear if he wants over a month? To me you have nothing to gain and much to lose by waiting.... if he tells you that is the earliest that he can get you in I would definately look for another doc. Should something be there and you do need follow-up you do not want to be with a caregiver who's facilities and that overbooked. I would tell them that you want to know NOW. There really is no reason not to.

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I think you may be caught in the holday season. I had to wait for a month to get my surgery between Dec 1 when a PET scan confirmed my 3x5 cm tumor till Jan 2. Everyone was down for holidays. I was very impatient. ha ha an impatient patient.

Still, if you are in a lot of pain, you should try to find another doc.

I am curious why there is to be a follow up ct scan. Didn't the first one set off enough alarm bells? After my initial and only ct, the next step was for the pulmonologist to do a bronchoscopy. Then, I had a lung needle biopsy. Neither one of the tests were positive. A PET scan finally confimed it as cancer. I don't know, maybe the structures in your lung are too small for the kind of biopsies I had. Maybe you should ask for a PET scan? I hope you get answers soon.

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Thanks Don,

I am not sure what we are waiting for. He did say the nodules were too small to do a needle biopsy. So I'm left feeling like we're just waiting for this crap to grow. After the 1st ct scan the doc put me on antibiotics for 2 weeks then had me go for a 2nd ct and then told me to wait 3 months. I guess I will just wait till Dec 30th for the next ct scan. But if these nodules are still there or bigger or anything I sure hope he'll do a biopsy then cause I just can't go on living like this. Thank you for your kindness.

Lisa

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Yea; sounds like a second opinion with a diff. Doc would be good idea, and would help with your anxiety also. Meantime, I hope you can get some relief for that pain....We have a Pain Management Center at my Med. complex....they have powerful stuff, including injections, and morphine pumps...etc. Can you ask if there is some pain relief available to you? Good luck....Rich B.

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Well, I have to say that I agree with your doctor's recommendation of follow-up scans. 6mm nodules are too small to biopsy without opening you up and resecting part of your lung. You can't feel 6mm spots or see 6mm spots and so resection would be a blind removal of that part of the lung. I'm not sure what is causing your chest pain but subcentimeter nodules on a CT scan will not cause pain. Also, carcinoma-in-situ of the vulva does not spread to the lungs since it is really a precancerous change of the skin.

The new CT scanner that we have sees "spots" in approximately 20% of all the scans I do now. I do a lot of follow-up studies because if I remove parts of lungs in all of these people, I am definitely going to be doing more harm than good. I see general outrage that a doctor would not go directly to biopsy but in my opinion that's not always appropriate. If you shop around enough you will probably be able to find a doctor who will remove part of your lung.

As far as the question of whether a doctor would want his wife/daughter/sister treated with careful observation rather than recklessly invasive procedures, this doctor's answer would be yes. But mine is definitely the minority opinion here so you might want to get a second one. If you want a thoracotomy, a very aggressive thoracic surgeon would be the best start.

Oh and the PET scan suggestion is a good thought but PET scans do not have the ability to accurately see lesions 6mm and less, a negative scan will not be useful.

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Dear Lisa,

Well, from what I hve gone through over the years of being a Lung Cancer Patient, I have learned that nodules are somewhat of the norm for many people. I for one have a nodule that we have been watching for about 2 years now. My nodule was 4mm and has grown to 8 to 9 mm now and it has stayed that size for the last year. My Pulm. Doc is concerned but he also isn't hitting the panic button. We ARE doing the wait and watch thingy and it's working just fine!

These nodules could me other things then lung cancer. They can be an infection, or fungus of sort. These things WILL show up on a PET and CT scan, so I have been told. Such as nodule, they are thinking that NOW that it is a fungus of sort. But we will continue to watch it and continue to have CT scans every 5 to 6 months.

I also know of several people that are lung cancer survivors and they too have nodules that are being watch. One of those people is a member of this board.

Lisa, I'm JUST AS CONCERNED about your situation as I know you are, but you honestly don't want to have a surgery a surgery of this nature if you don't HAVE TOO!

As for your pain in your chest. Well........not trying to scare you or throw more at you, but here is a little of what I am going through right now.

Last year I had what they call a Myxoma Tumor in the Left Atruim of my heart. (non cancerous) This tumor causes lost of havoc on our bodies and they are common in woman. Well, I had this tumor removed last year at this time. Sadly enough it has come back, in which I have just found this out a few days ago. The symptoms are not fun and can mimic a heart attack, and lots of other things. This is NOT related to lung cancer. I have to have this removed again very soon. (not looking forward to that)! So, before you go jumping to surgeries, you might want to have things checked out from head to toe first.

I think the Onc Doc is in the right ball park with what he shared with you.

I also understand your fear. I too come from a LONNNNG line of lung cancer in my family history. It's not a pretty picture.

God Bless and Keep us posted.

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Thank you all soo much. I am going to try to put this out of my mind and enjoy the Holidays. My next ct scan is Dec 30th so not that far off. No I don't want to have unnecessary surgery. Guess I just wish the doc took time to tell me why he was waiting and that it could be other things :roll:

Thank you all again. You really are a wonderful community and I'm honored to have joined you.

Lisa

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As far as the question of whether a doctor would want his wife/daughter/sister treated with careful observation rather than recklessly invasive procedures, this doctor's answer would be yes. But mine is definitely the minority opinion here so you might want to get a second one. If you want a thoracotomy, a very aggressive thoracic surgeon would be the best start.

My question was would the doctor "wait and see" when there are nodules in the lung and that kind of pain, not "wait and see" vs. being "reckless." You'd honestly prefer that to finding out what is really going on as soon as possible? I guess if you're saying there is no way to find that out other than a "recklessly invasive procedure," that's understandable. But given other options, I think I'd do what I could to find out what they were NOW rather than "wait and see" while they might be spreading.

Di

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I am going to put myself in the minority here also..

When my nodule was first found on an xray, it was around 10mm. I didn't have any past xrays to compare it with so my doctor, after a CT, a PET that didn't light up (I was told that it may be too small to "light up") and after many consultations he had with other doctors and radiologists, suggested I wait 2 months for another CT. IN the meantime he gave me tests to rule out TB, other viral infections, etc. The nodule was too small and in a bad place to biopsy, so waiting was the only suggestion that seemed to make sense. NO one wanted to open me up at that point and operate over something that may have been there forever. I had also lived in Phoenix for a year and supposedly Valley Fever causes nodules that mimic Lung Cancer. SO I waited.

Two months later the nodule had grown to about 13mm. By the time I had my surgery it was about 4 months from the initial time they found it. Am I happy that it took that long? NO.. it would have been nice to have it out a little earlier. But I don't regret the initial 2 month wait. It took longer than I wanted because of insurance issues and the need to find a 2nd Pulmonologist as I was not happy with the first.

We all have lung cancer here so of course the popular vote is to have the surgery no matter what, but how many people have had unnecessary surgery? Anyway, the pain throws in a different angle... I definitely think you need a second opinion if you are living with constant pain but as far as the waiting issue, I understand your doctor's caution.

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I reread from the start and this is what I first responded to:

multiple lung nodules, several on the right lung and 2 on the left.
-- this found on a CT scan 2 months ago -- September or thereabouts? Plus the pain and location of the pain. And waiting until December to do anything else.

Sounds like you had a lot -- CT, PET, tests, etc. and I did too -- to rule out some other possibilities. Doesn't sound like Lisa had all that, although she may have and I just misinterpreted. Since that first post, there was a little more info.

Going back in time and not knowing then what I know now, I might be content to wait it out, but knowing how aggressive small cell lung cancer is, I think now that I'd be wanting to do a lot to find out what it is. But NOT "recklessly" invasive procedures. I have no idea where that came from.

Di

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I have not had any further tests. No sputum, no pet. Just waiting..... I also don't want to have my chest cut open if not necessary. By the time now I would get into a doc for a second opinion it would be time for my next ct scan, 12/30/04 so I will just wait. I did also live in Phoenix for about 4 years so hopefully it's just valley fever or something. Noone seems to think my chest pain is from the nodules so maybe something else. I do have a heart murmur and am under alot of stress. You're all so wonderful and welcoming and I appreciate all of your input.

Lisa

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Just to share what happened with me on the wait and see approach---this was 1 year before my mom was diagnosed:

I had an abdominal ct-scan for kidney stone and it showed a "small infiltrate in the lung" and suggested a radiograph for follow up.

I had the radiograph which was normal,but my dr said those are not 100% certain. So he set me up with quarterly chest ct-scans for two years to check for growth. I got all paranoid, I went to a pulmonologist and had my chest ct scan---the infiltrate was GONE, so it was not cancer. BUT another one showed up on the other lung, waited 3 mo nths, and that one was gone too.

Point is, they told me they were positive it was not cancer, but they were practicing defensive medicine and followed up. I didn't have go to back once all was clear b/c cancer does not disappear suddenly. Apparently it is common for small stuff to show up on scans which is why they don't cut right away for something very small.

In my mom's case--well there was no question what it was.

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  • 1 month later...

I had my follow-up ct scan and it showed no change in the lung nodules. I feel very relieved and now will do another ct scan in 4 months. Since my last post my grandmother has been diagnosed with lung cancer. She has already decided on no treatment as she is ready to be with my Grampa. She will be the 3rd member of my immediate family to watch go thru this and it is just devastating. Thank you all for your previous replies and support.

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