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Left upper lobectomy

shay2
Posts: 5
Joined: Sep 2005

I had a left upper lobectomy on nov. 18th and when the pathology report came back it said that it could not be determined rahter it was primary lung cancer or a metastasis from cervical cancer I had in 1998. I had radiation and surgery for the cervical cancer that reccured and went to other organs. After having major surgery for that I have been cancer free untill now. I still have not saw a onocolgist yet but will be refered to one from my primary dr. when I go this coming week I guess, other wise I will try and find a good one closer than where I had my lung surgery. I did contact my onocolgist that did my surgery in 1998 and talked with him but I have moved and in another state so I need to find another one. The Thoracic Surgeon that did my surgery said he didn't think I would need chemo because they thought they got it all and there was no other signs of cancer, but to go ahead and see an onocologist soon. I do have a 4mm nodgal on my right lung that needs to be watched but the PET scan did not light up they said. I think that the course of treatment as to f/u with chemo would depend on rather it was primary or metastisis. I'm wondering if I need to get a second opinon from another pathologist so when I do see a onocolgist they can know what to do? I live 6 hrs. away from my surgeon and am doing my f/u with my primary dr. here in the sm. town I live in. I don't know what stage I am or the name of the lung cancer...I suppose my primary dr. will discuss this with me. I had the pathology report faxed to him. I really liked my surgeon but somehow I feel a little in the dark and have alot of questions.
Just wondering if anyone can relate to this and have any comments. Thanks for listening.

cabbott
Posts: 1048
Joined: Aug 2006

I have a history of both breast(2002) and lung cancer (2006). When they went in after the nodule in the lung, it looked like the same kind of cancer I had had previously in the breast. The week after surgery took place, however, the pathologist at Johns Hopkins did some microgenetic analysis of the genetic material and found out that I had stage 1 lung cancer instead of stage 4 breast cancer. The treatments for the two are very different. Instead of the usual rounds of breast cancer chemo, I needed more surgery to remove that lobe and watchful waiting. So far, no more problems have surfaced. If I had chemo for breast cancer, it would not have helped the lung cancer situation at all. Also, I would have had all my hair fall out and all those other lovely side effects. I wasn't so happy about more surgery (I even called the pathologist to personally question him about how sure he was about his findings) but I was glad they figured it out before things got worse.

It is okay to ask doctors to send your tissue samples to another expert for testing. They can also send slides of the findings. But the microgenetic analysis probably takes tissue. It is not something that all pathologists can do or have the equipment to do, so you may have to search around for the experts you need. Good luck!

shay2
Posts: 5
Joined: Sep 2005

Cabbott, thanks for replying to my post. I'm glad you have had no more problems and hope it continues to go that way for you. I'm glad to know that they can finally determine rather it's metastisis or primary. I was just so happy to have the surgery over with that I didn't ask alot of questions. So I don't know what stage I am or if they were able to even stage it since it was undetermined. Monday I am going to call the Thoracic Sugeron's office and talk with them about second opinion with path report. The surgeon's nurse that I talked with said that it didn't really matter rater it was primary or metastisis because they did the right surgery either way by takeing the whole left lobe. I wasn't referred to a onocologist there becasue I live 6 hrs. away from that hospital so I told them I would find one closer. Would you have any ideal how to find the best onocolgist or are they all about the same. I will still have to drive a little over a hr. to a bigger town to a cancer center, there are probally several onocolgist there. When I had my cervical cancer I had a great GYN Onocologist in NM but I am living in Tx. now. I don't know if you are suppose to mention hospitals or names of towns on these post. After you had lobectomy you didn't have to f/u with any chemo at all is that correct? I have read several different opinions here and on another cancer site about f/u with chemo after lobectomy even if there was no other cancer found anywhere...I think I would just go with what my onocologist recomended if I had confidence in them from what I've read. Thanks again for your reply cabbott...always helps to be able to relate to someone else. It seems like cancer has a way of making you feel very alone at times when in reality there are so many people going thru simular situations...I have really got a better understanding of my own cancer...by reading all the post here and also at the Lung Cancer Alliance site. Thanks again for your reply

cabbott
Posts: 1048
Joined: Aug 2006

Both my surgeon and my pulmonary oncologist (the chemo specialist for lungs) told me that chemo would not be indicated for my kind of lung cancer. I only needed surgery. If my cancer pops back, they told me I would probably go on a daily pill that frequently causes a rash, but it is not the sort of chemo that makes your hair fall out. That kind of chemo works with other kinds of lung cancer, but not so well on mine. I try not to read all the posts from other patients that insist that I will die if I don't have chemo. I trust my doctors. Well,I must admit I get on the internet and check up on every word they say, but so far the advice they have given me is gold standard for the kind of cancer and stage of cancer that I have. So far, so good. I was first diagnosed with lung cancer in 2004 and everything is normal so far.I will be checked again next month. I'm down to 6 month scans and in a year will go on yearly scans for life. That works for me.

I agree with Joe that you should start collecting your reports. The hospital provides them free to me, but I have to go to the hospital desk to sign them over. I carry them with me in a three ring binder to all my visits. That way I don't have to wait for doctors to order the copies, read them, and then make up their minds about what to do. It also helps me when I forget details. I'm 50 something and forgetting happens. That notebook is good for keeping blank paper in too so I can write down next appointment dates, store all those insurance things I signed at the doctors, and even carry enough money for lunch. I think I spent a whopping 6 bucks on the zip up the side fancy notebook so I'd look like I had it together. At least all those papers don't fall out and all those zipper pockets hold alot! Between visits that notebook goes on a shelf and I forget (or try to anyhow) all about cancer until my next visit.

Texas has a very famous cancer center called MD Anderson in Houston. They could proably refer to a very good pulmonary oncologist even if you don't live close. Texas is one big state. I have visited it only once and I was impressed by how big it was. I live way east in the second smallest state in the US: Delaware. You can drive across the state in about 15 minutes. It takes an hour and a half on a slow day to drive the length. Texas is not like that I know. But with email and phones, oncologists stay in touch with major cancer centers. They can refer you to someone close by that is good. If it turns out that you do not need chemo of any sort, you will only have a one time visit with the oncologist. If you do need chemo, that doctor can make up a plan and send it to your hometown doctors to follow. Any hospital or doctor's office can probably administer what you need. A great oncologist can decide what is needed.

Good luck with your search!

C. Abbott

PBJ Austin
Posts: 347
Joined: Mar 2009

cabbot, my sister lives in Houston and she is a patient at MD Anderson. It is indeed a wonderful hospital and it is a very good idea to contact them for help and referrals.

That's funny what you said about driving across Deleware in 1.5 hours on a slow day. If there is no traffic in Houston it still takes 1.5 hours just to drive across that city. Glad I live in Austin. LOL!!

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I am a head/neck cancer survivor (09/05) whose cancer of the tongue and neck was determined to be squamous cell carcinoma (SCC). Later, in 2007, it was determined I had cancer in my lungs as well. It turned out that there was actually only one node, and that a small one in my lower right lobe.

In Jan of 08 they removed this node but while they were able to determine type (SCC again) they were not able to determine whether it was metastasis or new. The hope, of course, was that it be new, and my surgeon made that guess on the fly and went ahead with a lobectomy.

Since then, I have been NED (No Evidence of Disease). Like you, though, apparently, it is unlikely I will ever know if the lung stuff was new or mets, unless it rears its ugly head again.

All of which is to say there are indeed those of us who can relate, as cabbott attested to as well.

As it happens, I live in a rather populated area of the USA and was attended by a very good surgeon, purportedly the best in my area. While he did his job well, I assume it is not and was not his job to determine the type of cancer nor its origin, but rather the team of laboratory boys and girls who are given the sample for diagnosis. The same, in fact, is true of your scans, as far as I have been able to tell: the original interpretation of your results is made by some guy (or lady) you have never met. THEN and only then does your family doc or surgeon or Onco Man get the results and the interpretation and put his/her own reading into play.

It is vital, I think, that you find an Onco Man that you trust, and that you let this person be your Answerman as well. I would strongly urge that you insist on copies of your records as they are created (they are generally free at that point, while most institutions will charge if you ask for them in bulk), that you read them, and that you highlight any areas that raise questions for you. I urge as well that you then take these written questions with you when you next see whomever you consider the most knowledgeable and trustworthy of your health care folks.

Hope and Humor!

Take care,

Joe

shay2
Posts: 5
Joined: Sep 2005

Thanks for your repley soccerfreaks. I called and talked with the surgerns nurse and he told me a little more info. He said my cancer was stage 1 non small cell. He also said it was squamous cell carcinoma as your was. He faxed path report and other info to my primary care Dr. and I will be seeing him tomorrow, ( I will ask for copies of path report) so I have alot of questions. The nurse also told me that becasue the path report didn't show any more cancer that I wouldn't be needing any chemo rather it was a primary or a metatasis, he assured me that it wasn't critical to know rather it was primary or metatasis. I still felt a little uneasy about it but after reading your reply I feel a little better knowing that my situation is not so isolated.
I called the cancer center in Odessa and they said I needed a referral from my surgeon so the nurse said they would call and get that started so if the cancer center don't call me by tomorrow I will call them and get an apt. with an onocolgist. I really don't know how to choose a good one so I just said a little prayer that God would put me in the hands of a good onocogist and one I could communicate with also.
I read your story about your cancer after someone on the chat mentioned your name and told me you were very knowledgeable about lung cancer...you have really been thru it that is for certain. Its great how you have such a sense of humor about all you have been thru...It's funny how you signed off with "Hope and Humor" cause after reading yours and others post on this site I have been trying really hard to try to apply some humor to my life but I have to admit I am way to serious of a person and fighting very hard not to give in to the pity partys... I don't even want to go there!!!! It's good to read the post here and the ways people deal with their cancer...It gives you a sense of being connected and not so isolated. One thing for sure is you have to have been there I think to really understand what a person is going thru. Most of my friends and family are just kinda acting like it never happened cuz they really don't know what to say I guess. So I'm thankful for you guys on this site that aren't afraid to talk about your cancer and in such a positive way. Again, thanks for your reply and all the info and the humor part...helped alot!

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