Nodule Found - The Nightmare Begins

compositions
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Recently a spot showed up on a routine lung x-ray. Had a CT that confirmed it at about 1.5cm. A lymph gland appears to enlarged, also. I smoked 30 years. I'm going in for surgery next week. They don't know that its cancerous yet, but these facts don't add up good. I have 3 children and a wife that need me.

And yet the prospect of this being cancer is not the nightmare. The nightmare is the arrogance and dismissive culture of the medical community.

I am a professional dealing at a fairly high level in business and I have never witnessed the such arrogance towards a client or customer. But towards a patient its routine.

I think its because doctors live in the world of "the good excuse". 2 hours late, they have a good excuse, too busy to inform on procedure...good excuse. They take the life and death nature of their job and then use that to excuse basic rudeness and incompetence.

Currently, I am unable to get information on what the next steps are if this turns out to be cancer. They have a "lets cross that bridge when we get to it" attitude. Well, it either is or isn't, I feel like we are at that bridge now.

Are there support groups or others on this site that have been in this place, have experienced the frustration with the system and could help guide me?

19 replies

Faith

Welcome to our site. I'm very sorry you have found us but for excellent info and much support you have come to the right place.

Fortunately, I have had excellent care so I can't advise you on this issue, but I know from reading and from this website and from everyone I have spoken to - a second opinion is absolutely vital in the lung cancer world, rather, in the cancer world. And that second opinion should come from a reputable oncologist at a comprehensive cancer care facility. I chose MD Anderson, Houston. A plane ride for me. I was torn between MD and Memorial S/k in NYC because each have the best thoracic cancer care in the country, in my opinion. In my opinion, on the planet.

Plus, have you had a PET scan? This is SOP with a cancer probability. I was given the PET in FL after the CT, before I traveled to Houston. PET lights up all cancer in the area of suspicion. Please do not have anyone operate on you until you have chosen the best place for your care!

I think you will find that at a comprehensive cancer care facility of your choosing, oncs have entirely different attitudes. Mine have been nothing but patient, kind, knowledgable, and utterly sympathetic. I don't think this is unusual treatment from great oncs in great facilities.

I sure hope I am preaching to the choir with this post. Please reply because I'm worried about you having surgery without a second opinion. I think all of us will be worried about this. Thanks.

"Faith"

dhoppe

again welcome to our site. I'm sure you'll find it very informative.

I have to second what faith has to say"'get a second opinion and a PET scan.

I understand how you feel about the doctors I had and still have the same problem. their arrogance is very hard to deal with. But after dealing with them almost every day for the last 10 years I've learned a few things. for a little back ground on my self my husband is paralyzed form the chest down and i was just diagnosed with lung cancer after a surgery that removed my right lower lung. along with 3 kids and being a care giver for my mother who just past. i unfortunately have a lot of experience with the health-care system. So this is my list I try to use.

1. Never let any one from doctors to nurses intimidate you. Never.
2. always make a list of questions before you go in.
3. make sure you ask every question on your list no matter how long it takes.(remember you are the Customer)
4. always get a second opinion.
5. get all reports from hospitals and Dr's . ct scans, PET scan, pathology ect..

I find when a Dr. knows I go to these lengths and bring in the reports or ask for copies at the Appt. I mean business. I'm not looking for a new friend and I already have a god so I don't need them to act like one. some seem relieved and talk to me a lot different. they drop the almighty attitude.

and again I have to second Faith. I haven't been there yet but I hear Anderson in Huston is the best lung cancer center.

I hope I could help a little, and good luck.

Diane

compositions

Thank you for the great comments, Faith. For some reason, I don't recall, they have felt it best to go right to surgery from the cat scan, skipping the PET scan. It's worth noting that I live in Los Angeles and have access to (supposedly) top quality doctors. Also, in a move that I feel is counter intuitive, they are sending me to a thoracic surgeon and arent even bringing an oncologist into it, waiting to see if its cancer (30 years of smoking...). It would seem to me that the oncologist would inform the the work of the thoracic surgeon, would possibly contribute an important perspective.

What defines a "comprehensive cancer Care facility"? I am local to UCLA Medical Center and Saint Johns Medical Center which are both major facilities in the Los Angeles area. Do you mean businesses especially formed to treat cancer as opposed to departments in major hospitals?

compositions

Thank you Diane. This is very helpful.

Faith

Yes - I think you should go to a cancer hospital, Compositions, for a second opinion. And I think either Memorial or MD Anderson Houston are the best in the world. And because you live in LA the flights would be easy and relatively inexpensive. I have friends in NYC and I would have been able to stay there inexpensively and I love NYC (my home), but I chose MD because my cousin who is an onc felt it had a slight edge. She trained at Memorial S/K and thought the thoracic dept. was excellent, but she wasn't impressed with all the depts. She had done a lot of research about MD and she knew some of the drs in thoracic from having trained with them at MSK. So I guess I would advise you to go to MD, Houston.

When I went, I had already had from here, in Florida, a CT, a PET, a bronch for a biopsy, and a regular xray, the last one where no cancer showed. I had to bring the CD's of the CT and the PET along with the CT and PET reports, the actual slides from the cancer cells from the bronch along with the pathologists report. See, this is what troubles me about your post, that you haven't had all these procedures.

This is what I would do. I would make an app't with your present doctor and ask him why these procedures haven't been done. Maybe with your particular 'probable' cancer, they don't do these things, but gee whiz, if they are going to take out part of your lung I would think they would at least do a PET scan, don't you? I have a nodule on my right lung which is not cancerous! I never lit up with a PET and it remains stable through all CT's. I was told that any infection could have caused it, asthma could have caused it, environmental pollutants could have caused it, 30+ years of smoking could have caused it. The point is, is isn't cancer. Ask your doctor why you have not had a PET scan! And tell him you want one. If it is in fact cancer at least you will know. And then go to MD or Memorial SK and ask them how they would proceed with your case. Then, if MD concurs with your own drs you will be confident that you are getting the proper care.

We have a very knowledgable guy on our board named Ray who lives in CA. I am going to be in touch with him and have him get on to post to you. He wlll be a very valuable resource for you. He goes to Cedar's I think, and he tells THEM what to do! He's not a doctor but he knows more than most, I think!

Compositions, you are so very fortunate to have found this board now, before you have proceeded with anything so you will do everything right, right from the start. There are so many knowledgable people here to advise you every step of the way. Believe me, I'm not one of them! I'm only giving you what I have learned here, from them, and from my own reading. I wish I had found this board before I began, but by the grace of God I had my cousin to help me or I
would have made all kinds of HUGE errors. God is good.

With all the above being said, I am certain that major facilities and drs in LA are excellent. However a second opinion at a cancer facility is absolutely necessary no matter what hospital you start with.

Hopefully you will hear from Ray before the day's end, or maybe tomorrow on acc't of time differences.

Take care

"Faith" Joanne

DrMom

I had a PFT done on a Tuesday and my pulmo did not get the results until that Friday. WOW. But to top that off, I called everyday from Thursday, Friday, Monday and finally Tuesday he decided to call me with the results. My health care provider SUCKS too, so I know how you feel! Now I know my lung fuction is not good enough to allow for a lobectomy. Next is a PET scan, then possibly a needle biopsy if possible on my 1.5 cm and 8mm nodules. If not possible then scope. I know the plans, but getting the results is the hard part.
Dr Mom

BetsyT

I live in LA county and would love to help in any way. Navigating this road is like going to an alien planet-You are not alone here.There are excellent facilities here and UCLA is a Comprehensive Cancer Center.Where are you going now? Please feel free to e-mail me @ bobandbets@sbcglobal.net. After completing 11 months of treatment (6 weeks ago) I have accumulated quite a bit of info and would love to share this and hopefully help you avoid some of the confusion that can accompany your pending diagnosis. Betsy T.

Don_M

I have been receiving excellent care at comprehensive cancer center in Seattle. I go to a local clinic when I have chemo. I help coordinate communication between the Seattle facility and the local clinic. I am very happy with my experience at both places. Maybe you need to go to a major comprehensive cancer center and let them direct treatment. You could get it implemented locally as I have been doing for my chemo. I do the radiation in Seattle because they have the latest technology. At my third cancer, I told my local oncologist I wanted to get a second opinion and he referred me to the Seattle oncologist. If I were to ask my Seattle oncologist or my local oncologist a “what if”, they would tell me of all the possibilities. Generally, they include me in the treatment decisions. For my last treatment, the Seattle docs decided to just attempt to control my tumor rather than try to kill it with cyberknife, and did not include me in the decision, but when they explained it to me at a pretreatment consultation, I went along with it. Sometimes the cure can be worse than the disease. They were afraid I would get too much radiation damage to my healthy lung tissue and so backed off a bit.

Don M

greccogirl

Hon, I feel for you but I have to tell you that this is common in the Medical World and you should try not to blow a gasket over it, although it is sometimes hard. There are many wonderful and competent people in the medical field and there are, frankly, just idiots who don't care and you're going to meet those. Medical care is SO ruled by the Insurance world and you're going to find that out too. ASK QUESTIONS, write it down, don't put up with "we'll cross that bridge when we get there". Be insistant.

Example - I was called and told to show up for an ultrasound too long to explain why, tomorrow. When the girl from the hospital calls to precertify it she says the doc's nurse so and so wrote "patient has orders" on it. I prompty told her the patient "has no orders". She continued to INSIST that was what was on there. So I called the doctor's nurse whose name she gave me. SHE insists that isn't what she put on the papers (Iguess the other one just made it up) and that the orders were fax'd. I told the nurse to did the orders to please call the radiologist and make sure everything was ok. Know what she said? "I'm not doing that. I've alreay fax'd the orders, if you get there and they don't have them they will call".

See what I mean? Hardly anyone gives a crap about doing their job anymore and you are going to run into a LOT of this. So if the orders aren't there the person who is going to be inconvenienced the most is ME. When a simple phone call could have settled the matter.

The call calling could have said "let me check for a fax" and the one at the doctor's could have put me on hold and called to see IF THEY GOT the fax. Neither one would do their job.

Welcome to the medical world.

Having said that, we are all here for you, this is a wonderful site, and cancer can be overcome. You are able to have surgery and believe it or not that is blessing, many cannot.

You will find tons of info here and also a sympathetic ear. :-)

Deb

greccogirl

I hope I didn't come across as too bitter and after I reread what I wrote, I decided to clarify a little. There are some WONDERFUL medical people out there, my original transplant people were of this kind. It is just that medicine has become assembly line/red tape and you are going to have to deal with a lot of that. All of us have and boy I've spent my share of times "blowing a gasket". Sometimes you just can't help it.

You have found a fantastic site with loving, informative and caring people. Welcome. Keep us informed!

Deb

Faith

See? What did I tell you! So many wonderful, knowledgable, supportive people on this website, it's amazing! And a couple right in your own backyard! I'm so glad you found us, or I should say 'THEM" - They are simply amazing, aren't they???

Sincerely, Faith

compositions

Yes....an amazing group of caring informed people. Can't thank you all enough!

compositions

Thank you Faith...would love to connect with Ray. One of my options is at Cedars, his experience would be helpful.

robinwd

Comprehensive cancer centers usually present a team approach to your care plan. Consisting of a pulmonologist, an oncologist, a thoracic surgeon, an oncology nurse, a nutritionist and sometimes others, they team review s all of your diagnostic data, examine you, order any additional tests, and then devise a treatment plan which they present to you, with extensive explanation and options. Always have someone with you (family member or friend) who may help you make notes, ask questions, etc.
Hope this helps, Compositions. Good luck.

Ray

Dear Compositions

It is the job of the surgeon to do surgery. That is what they were born and bred to do. It is the job of the medical oncologist to tell you what your options are, what scans should be taken and to coordinate your overall care. Cancer treatment is very complicated and you need help. So see an oncologist right away and postpone the surgery.

Get an appointment with a medical oncologist. You will then have a cancer team consisting of:
(1) Medical Oncologist
(2) Pathologist
(3) Radiologist
(4) Surgeon
(5) Pulmonologist (probably, but not always)

BTW, I hear of this kind of thing happening all the time

compositions

Ray,

Thank you. This just makes sense, doesn't it? This is what I suggested to my internist who is sending me to the surgeons and he is saying that it doesn't make sense until we know if is cancer. They feel that surgery is the only certain way to determine this.

Frankly I think they are concerned that they could bring in all these people ...
and I might waste their time by turning out healthy! Wouldn't want to do that, now would we...lol.

You feel confident an oncologist should be brought in now, even though cancer has not been proven?

MikeDunne

My progression from discovery of a spot in an x-ray through surgery and chemo, I believe, is the result of a number of review boards that oversee member doctor's work.

My primary care GP took that position that the size and shape of the spot did not appear to be cancer. Note: I was a 40+ year smoker. To determine location of spot (x-ray being two dimensional) ordered a CAT scan. CAT result was that nodule was inside upper right lung lobe. Again, took position that size and shape not indicative of cancer.

To be safe, she scheduled CAT scans over a period of time. The reasoning behind that was that if the nodule did not grow or change shape over time, then, the nodule could not be cancer.

After series of CAT scans it was determined that there was no change or growth. Big relief.

A few weeks later, she called to advise that she had issued a referral for a visit with a pulmonary specialist "to be safe". After one meeting, pulmonologist ordered PET scan. He also felt that was probably not cancer. Still feeling lucky (and living along that river in Egypt).

Nodule lit up in PET. No lymph notes lit up. Pulmonologist issued referral to surgeon. Pulmonary guy felt that needle biopsy of nodule in lung is not good risk/benefit ratio in my case and that nodule should be removed in any case.

Surgeon felt VATS removal of nodule would probably be the extent and didn't expect that he would have to remove any other part of lung. However, he did note that, depending on what they found inside and what extent could be handled via VATS, it is possible that he would have to do the big cut and rib spreading. Ordered Pulmonary Function Test and Heart Stress test. Did well on both and qualified as good candidate for surgery. All done on expedited basis. From time of pulmonary doctor recommendation to surgery was just a few weeks.

During surgery, nodule determined by lab to be cancerous. Much of upper right lobe contained cancer. Upper right lobe needed to be removed. Complications required the big cut and rib spreading.

Harvested lymph nodes contained tumors. Staged IIIA. Surgeon submitted case to cancer review board. Cancer board concurred with surgeon's recommendations. I was assigned an oncologist.

In a few weeks, while still recovering from surgery, had meeting with oncologist. She charted a very aggressive chemotherapy attack. The attack is against the unseen that probably exist given the existence of cancer in lymph nodes. I decided to go along with the 4 cycle/20 infusion plan. I'll be finishing in three weeks.

While I can be critical of steps in this progression, I am satisfied. Realizing that individuals can err, the safety net (review board) that reversed some of the decisions made by the GP did the trick. In other words, the organizational structure and SOP for the organization provided a built-in set of second, third (or more), cross discipline opinions. I consider that to have been life-saving.

I concur that 2nd opinions are crucial. However, I don't agree that an oncologist need be involved prior to PET or other diagnostic tests (as long as the tests are ordered).

compositions

Thank you Mike,

Very articulate history, illuminates a lot for me.

Appreciate greatly,

Rick

greccogirl

I am one of the unusual. None of my lung tumors ever lit on the PET. The last PET I had before my lower left lobectomy was perfectly clear, and yet the CAT showed progression in both tumors. I had the surgery, because they were too deep to be biopsied. They were both cancer, according to the path but didn't light at all.

PET scans are very good but not infallible, they can be incorrect. But I agree you should have one first, and fast.

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