Yesterday I had a CAT which showed no change (growth) in the nodule discovered accidentally three months ago.
I saw the surgeon afterward. He does not "like" and does not do, VATS. (Before you suggest seeing another surgeon, I think he's probably very good, being head of Thoracic Surgery at Johns Hopkins.)
He told me emphatically that 98% of all lung lesions are or will be cancerous.
Since I had decided to wait out another three months and have another CAT then to see if there was growth, I'm starting to feel foolish.
In other words: If everything discovered in the lungs (almost) is cancerous, why at my last appointment (three months ago), did the surgeon reluctantly say, after recommending surgery, "well, if you want, you can wait three months and see if it has grown"??
Actually, I'm getting over a bad cold, so right now isn't a good time to have surgery, but I'm thinking, WHY AM I WAITING AT ALL? (If 98% of nodules are cancerous.)
As always, I'll be most grateful for your thoughts, experience, opinions, etc. Thanks!!
Barbara
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Could use some of your thoughts
- By barbaray
- Posted November 28, 2008 at 10:09 am · 18 replies
- In Treatment options
- Shared with the public
Explore topics in this discussion:
Cancer Surgery Pain Spondylolisthesis Histoplasmosis Prostate cancer Lung cancer Spinal stenosis
18 replies
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- By Munker
- Posted November 28, 2008 at 11:53 am
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My nodule was discovered by accident and i waited an entire year and monitored it with CAT scans every three months. There was no change to the nodule but i decided to get it out in August. Original plan was to have VATS but surgeon could not easily locate nodule and I had to have the open surgery. My family doctor, obgyn and family members all suggested that I not do the surgery because it was probably scar tissue but I am glad I went with my gut because the nodule was cancerous. I don't see the point in waiting. If it is not cancer at least you know 100% for sure and you can move on with your life. VATS is minimally invasive and recovery time is really not bad from what i have read on this site. Open surgery is no picnic but i was out of the hospital in 1 week and back to work after two months. If you choose to have the surgery make certain you are in good shape physically before you go in. Take daily walks or whatever physical acticity you enjoy doing. Hopefully you don't smoke but if you do try to cut back because it makes the whole surgical process and recovery a whole lot easier. No need to rush to surgery next week but Don't Wait!
- By Munker
- Posted November 28, 2008 at 12:01 pm
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I just noticed on your profile that PET showed uptake. Just as an fyi, mine did not show uptake. that does not mean it is cancer because certain inflamations, etc can cause false positives but it should also be a factor in your decision. My pulmonologist told me that if my PET had been positive he would have recommended immediate surgery and I would have gone for it because the best bet for cure is to get these little bastard cells out asap.
- By texaszan
- Posted November 28, 2008 at 12:06 pm
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You haven't had a PET? I'm surprised that wasn't done right away. If you trust this surgeon's competence and he thinks there's a good chance it's cancerous then by all means get it out ASAP. Why gamble with your precious life?
- By barbaray
- Posted November 28, 2008 at 4:18 pm
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Yes, I had a PET scan three months ago which showed some "faint" uptake.
The reason I did not forge straight ahead was because two months before, I had surgery to remove ovaries, tubes, etc. for an ovarian mass.
The mass was benign, and I thought I'd give myself a few months, maybe, before more surgery.
I'm 77 years old. Anyway, I probably will go ahead in late February, regardless of what the next scan shows.
Thanks for your input!
- By barbaray
- Posted November 28, 2008 at 4:26 pm
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Munker,
Thanks much for your input. I'm thinking of going ahead with the surgery in February, when I'm scheduled for another CAT scan.
I guess maybe unconsciously I needed some time to deal with reality--with the threat of terrible illness/death.
As to getting in shape, I'm 77 years old with rather serious (spinal) stenosis and spondylolisthesis--which means walking (as you recommend) is too painful to do.
I had one hip replaced and need it for the other one too, so walking just isn't an option.
However, I can go to the indoor swimming pool, even though it's hard to get used to the hassle of dressing, undressing, etc. etc.
Thanks much for responding to me, and warmest thoughts and good luck to you--
B.
- By Heinke
- Posted November 28, 2008 at 4:46 pm
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I had sterotactic radiation for a tiny nodule. It was much easier than surgery and I had no side effects. There were just five treatments. The best part is that it was effective. I see that you are in the D.C. area. They do the procedure at Fairfax Hospital.
- By terryl
- Posted November 28, 2008 at 5:06 pm
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To quote Shakespear " OUT! OUT DAMN SPOT!"
I had a " density" that the dr, the pulmonologist, the surgeon all said, " well it really doesn't look like cancer" But with a positive PET, they recommended surgery. I will never regret having had that surgery instead of waiting three months. Lung cancer metastasizes early. My tumor was only 2 cm. I have stage IV lung cancer.
I say cut it out.
- By Munker
- Posted November 28, 2008 at 5:13 pm
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WOW. Good idea to wait for the surgery a few more months should not make a difference. I am only 49 which I am certain helped my recovery. Check out all your options and keep me posted.
- By Chum
- Posted November 29, 2008 at 9:37 am
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First, I went to Sloan-Kettering for my lung cancer and am now going to Johns Hopkins for prostate cancer. So I am aware of what happens at Johns Hopkins. Regardless of how much you like your doctor, I'd still opt for another who would attempt the VATS procedure. Sure some surgeons don't "like" VATS -and my guess is that they are not schooled in it. When I questioned a surgeon at Johns Hopkins about using robotic surgery for the prostate, he indicated that he found no big difference for prostate surgery outcomes between regular and robotic for prostate. I was about to jump on him, because I had robotic surgery for my lobectomy and I knew there was a difference, BUT he went on without my prompting and said , "it makes a huge difference with lung and kidney, but not prostate." He went on to say the difference in recovery for lung surgery was major.
So check with Marc S. Sussman at Johns Hopkins - get a second opinion from George Washington, or some other area hospital.
As for the nodules, I was told I had some other nodules in my other lung. They tracked those for 4 years! My surgeon at Sloan-Kettering indicated to me from the start that he was only being cautious - not worried since 25% of ALL people have nodules that are not cancerous.
So - on at least two grounds I would suggest that you shop around for another opinion. Lots of good modern doctors out there who are not worried about exploring other options.
It may well be that the surgeon is not saying what you hear - you really need to at least reaffirm that what you think he said is what he said. Sometimes we hear something that others have not said.
Courage
Chum
- By barbaray
- Posted November 29, 2008 at 11:10 am
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Thank you so much for your thoughtful reply. A couple of questions:
--Who is Marc Sussman at Hopkins?
--How do I reconcile what your doc said, that 25% of all people have nodules that aren't malignant, with the surgeon's telling me that "98% of all lung nodules are malignant." (I'm not good at arithmetic, but the statements seem appositional.)
I'm pretty sure I heard the surgeon's VERY brief remarks correctly, because this time I had my son with me. He heard the same in the two-three minutes we had with the surgeon.
Somehow I feel fear when I think of seeking another surgeon who would do VATS. Hmmm. I know we all tend to regress a little with serious trauma of any kind, but I've got to pull myself together and think this thing through! (Says she--)
Chum, I hope your prostate treatment is going well and you've got a top doctor. Thank you and thank you again for taking the time to think about my problems--Best from Barbara
- By Chum
- Posted November 29, 2008 at 12:35 pm
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I did a quick search of the Johns Hopkins site and found three thoracic surgeons (Sloan-Kettering has seven I believe - all of whom do VATS) and Marc Sussman was the only one who seemed to do the VATS procedure.
I took several listeners with me - glad to hear you took another one.
I cannot imagine why he doesn't "like" the VATS - it is SO much less pain. With the regular surgery they often take out a rib and in doing so they also cut lots of muscle and nerves. The difference is tremendous! Also, if you use the VATS procedure, they can go in, biopsy the nodule and affirm it is cancerous. If it is, they then do a wedge resection or lobectomy using the same incisions. If it isn't cancerous (one can hope), they simply close you up. As far as I am concerned, looking forward to another VATS doesn't bother me at all - but going through the "regular" surgery chills my soul.
Interestingly, based on the two consultations I had at Johns Hopkins (one with a surgeon and with the head of radiology) I've decided to go the radiation route. Got the head of radiation heading up the team (so I'm not against going to the head man). Surgery sounded fine, but radiation (IMRT) sounded even better.
Whatever you decide - rest assured, you will feel better knowing you are making the decision - not having the doctor tell you what you should do.
Courage
Chum
- By HighlandGuy
- Posted November 29, 2008 at 12:51 pm
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I'm sorry, but haven't you heard of benign nodules (that are very common) and indolent lung cancers? In the most valid screening study to date, (I-ELCAP), nodules are validated by CT scans three months after the first CT scan. If there is no growth, one of two conclusions are drawwn: the nodule is benign or it is an indolent lung cancer. In either case, if it is doing no harm, why would you want surgery? In the I-ELCAP study, follow-up CT scans are recommended three months later!
In my case, when a sizeable nodule was found, they did a fine needle biopsy to establish whether it was benign or malignant. The biopsy showed I had Adenocarcinoma NSCLC. Three months later a second CT scan revealed that the nodule tripled in size. The average adenocarcinoma NSCLC doubles in size in 6 months. I had my URL lobectomy days later. I have been NED for eight years.
One of the major causes of resistance to nationwide lung cancer screening is concern that doctors would be performing unnecessary surgery to remove nodules that would never spread or lead to death (overdiagnosis).
Have you even had a biopsy, to determine if you even have lung cancer? Why would you want surgery (with all it's risks), if it will accomplish nothing, or serve no purpose?
HighlandGuy
- By barbaray
- Posted November 29, 2008 at 2:38 pm
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Hi---Thanks for replying.
The surgeon said the location of the nodule makes it impossible to biopsy. That's why he wants to remove it.
Q: what is an I-ELCAP study? Where is one found?
Q: "indolent" lung cancer: does that mean a tumor that just sits there and doesn't grow?
Q: What is "URL" as in the "URL lobectomy" you had?
With warm wishes for your continuing health--Barbara
P.S. I don't really WANT the surgery--especially since I live alone!!
- By HighlandGuy
- Posted November 30, 2008 at 1:43 pm
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First of all, I would challenge your doctors claim that 98% of lesions, nodules or tumors become lung cancer. A very high percentage of the population have lesions, nodules and benign tumors in their lungs that never become cancerous!
I have found that doctors often claim that biopsies are not possible when in fact, that is not true. There are surgery-hapopy surgeons and there are those that are overly cautious.
Surgeons in particular, seem to dislike and refuse to recommend "fine needle biopsies," because they involve special skills, are done by radiologists (not surgeons) and involve some limited risks. I have found the concerns of doctors to be over-exaggerated! I had the procedure performed on three occasions, had perhaps the most serious consequenced (major lung collapse) and I would have them done again without question.
There are locations that preclude getting biopsies, but they are uncommon.
The I-ELCAP study refers to the International Early Lung Cancer Action Program, the most comprehensive and effective study on screening to early detect lung cancer. Early detection is what has dramatically reduced deaths from other major cancers. You can get full details from the Internet. It represents the greatest opportunity of saving lives from lung cancer.
It is an established fact there are very fast growing lung cancers and there are lung cancers that grow so slowly, that they pose absolutely no threat to the life of the patient. Tests have shown that the size of cancer tumor that I had doubled in size at any periods from ten days to 16 years. If your small tumor isn't going to graw in size and spread to other organs, it will pose no threat to your life. The term used to describe such slow growing tumors, is "Indolent," although that is not grammatically accurate. Doctors commonly recommend regular monitoring (with CT scans) to make certain that "indolent," nodules don't suddenly begin to grow. \
URL simply stands for "Upper Right Lobe," of the lung. It was the lobe that was the site of my cancer and a "Lobectomy," surgically removed it. The lobectomy unquestionably saved my life. I say that because my cancer was growing at some 6 times the average.
Lung Cancer is a term applied to a number of extremely complex forms of cancers originating in the lung. In my experience, I have found very few medical doctors that have the combination of total grasp of the disease plus the judgement required to effective treat it. It is one of the reasons why lung cancer has such terrible survival figures. We don't have enough really qualified lung cancer specialists.
I know I sound cynical about doctors, but I have learned from painful experience that you have to stand up to them, challenge them at every step, when it comes to a disease as complex and little known as lung cancers.
I have the feeling that many doctors believe they can tell us seniors anything and we will believe them. I don't buy that!
Best wishes HighlandGuy
- By bshrink
- Posted November 30, 2008 at 6:23 pm
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HI,
I have avoided even looking at this list for a month, as I have gone into denial. I have a spot on my lung and they told me the same thing. Wait 3 months and get it scanned again. If it has grown the thoracic surgeon I talked to would take it out with a VATS procedure. I want to completely forget this has happened to me, and am pretending it it nothing..likely just histoplasmosis or something.. Nonetheless, come January I will have the scan. I think you should wait and if it grows then have it out using VATS...don't go through a tougher procedure than you need to. Even the head of JH's can be wrong. VATS is used enough now to be considered appropriate.
take care, and be brave, since I am one big chicken,
Betty
- By mitziger
- Posted November 30, 2008 at 6:45 pm
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Barbaray, they could not check all of my nodules but removed 2 from the left lung, one out of the 2 was malignant. They could not get to the right lung from where they operated so they do not know about any of those on right lung but they have not lit up like they were anything unless they do this time when I have another PET. I was told by the radiologist, his dad has nodules all over both lungs and they see a lot of this. They were watching mine since 2002 and this was a new one I had develop, they have checked mine yearly for growth. They were going to remove upper left lobe but decided after new ct not to chance it in case all were malignant which they still do not know but they don't appear to be at this time. Some had shrunk and some had dimished before any chemo so who knows, pet showed probably inflammaion.... Good Luck Barbaray on getting this taken care of. I had wedge resection done.
- By lisalulu
- Posted November 30, 2008 at 7:55 pm
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How do they do that?? was that the only thing you had was one nodule.. and how big was it?
- By barbaray
- Posted December 1, 2008 at 10:45 am
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Betty,
Thanks for posting! Q: did you have a PET scan? If so, how did it turn out?
Take heart--I'm 77 years old and still flapping around trying to learn all that I can and then make a decision.
I think it's absolutely normal to be overwhelmed when confronting the possibility of lung cancer. But where would we be without this wonderful web site full of wonderful, helpful people?
Hope we hear more from you, and if you had a PET scan, how did it turn out?
Warmest thoughts from Barbara
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