New to lc

[jang]

I found out on 3/28 that I have nsclc. I am scheduled for a lobectomy (left upper lobe) next Wednesday, the 20th. They are going to try to do VATS. My lymph node biopsy came out clean, so the dr is optimist that the lobectomy will get everything. He doesn’t anticipate any chemo or radiation. I would like to hear from anyone who can give me advice on what to expect, or how I can prepare for the procedure. I am scared to death. I am a otherwise healthy 47 (as of yesterday) year old woman with 2 daughters, 19 and 10. Any advice would be appreciated.

Jan

[Donna G]

Welcome. Glad you found us. VAT is a great way to have a lobectomy, if you qualify! Very small incision, no broken ribs, quicker recovery. Hope all goes well. Chemo has been recommended by some even for Stage I because of micrometastasis, cells too small to be picked up now by pathology or xray. If no chemo, be sure you have Cat Scan follow up for a couple of years at least. Please keep us posted on how things are going. Donna G

[richinsdakota]

Hi; welcome...sorry about ur diagnosis, but you have found a great place for support and learning. Most of us have been where u are now, and Im sure you will get some helpful replies in short order, usually. The bio info under ppls reply posts are a wealth of info too.

I assume VATS is the scope and instrument surgery? If so, this is the least invasive procedure, hope they can do that for you. I had a full thoracotomy incision w/rib removed, and lost the entire left lung. Major surgery, but one does recover , tho a long and painful process, and hopefully they get all the cancer, whichever surgery they choose.

As far as preparation; they like u to quit smoking, if u do...I prepped by building up my physical stamina, by walking a lot, or jogging, just generally be as strong as possible. I think it really helped me to recover faster, and get back home. Mentally, I spent a lot of time here, and on online cancer sites, researching, learning. (Web MD, NCInstitute, Lung assoc., etc.) Others here may know of more ideas they used.

Know that cancer diag. is not necessarily a death sentence anymore, ....soounds like u have a good chance to be cured by surgery. They may recommend adjutant chemo sev. mos. after, depends on Docs, what they do there.

Keep posting with your questions, feelings, requests....ppl here are glad to help with all. Good luck and welcome again. Rich B.

[cindi o'h]

Hi Jan,

welcome to here! Good thoughts given to you before me by Donna and Rich.

No one likes to hear the words lung cancer directed at them. I remember how awful and frightening that sounded. I felt completely out of control. It sounds, though, Jan, you are moving forward quickly and you have had many tests behind you thus far, if you are already moving toward the VATS procedure.

I do know that you will want to have a doc who is experienced in this. There are many thora surgeons ie..heart, lung, thora cavity, then there are thora surgeons who only do hearts, but not that many thora surgeons who only do pulmonary work...! That might be a question you will want to pose.

I know that it may be difficult to believe at this point in your diagnosis, but you are truly one of the lucky ones.

I hear that you mention your girls. And that you are 47 years old...that is how old I was when I was diagnosed over two years ago in a very advanced stage...inoperable! and I am, so far, disease free and 50 TODAY! Please do not regard this as a death sentence..it is not. You can, and very likely will, live to see all of your grandchildren have babies.

We are so fortunate to be living in this time when advances in surgery, medicine, and cancer treatment can make a difference in our lives.

Read as much as you can.. there is so much to learn. Any questions that you have, we have all had them at one time another too, so ask away anything at all that you don't understand. We will do our best to help you through with anything that we can.

All the best, Jan, for a successful surgery, and a rapid recovery.

Cindi o'h

[wfshaw]

Hi Jang

I am going for mine, Lower right Lobectomy, on Wednesday the 20th also at Fox Chase in Philadelphia after being diagnosed back in early March. A couple of problems came up therefore the delay. Where are you having yours done?? Waht part of Maryland do you live. My brother lived in Odenton for many years.

I'LL SAY A PRAYER FOR THE BOTH OF US. Mine sounds very similar to yours although they may recommed some chemo as an preventative measure. Believe me I know what your going through. The agony stress being scared. I think it happens to all of us.

Bill In PA

[jang]

Thank you all for your prayers and advice. It is really good to be talking to people who have been through this.

My surgery will be done at UMMC (University of Md. Medical Center) in Baltimore. They are supposed to be one of the best in the Md. area from what I have read. I feel very comfortable with my doctors. The one doing my surgery specializes is VATS.

Bill - I live in Southern Maryland - about an hour and a half from Baltimore. I can't believe we are having this done on the same day. Please keep in touch and let me know how you are doing. I will be praying for you. -- Jan

[Maryanne]

Hi Jan,

Sorry you had to find us, but as you can see this site if full of support. The people her will become like family to you.

If you are getting the Vats, You are very lucky. It is a mostly a painless procedure and does not involve any rib movement of breakage. That is one of the most painful parts of recovery during a removal of a lobe of whole lung. Also your recovery will be much quicker than being cut.

If you are having this I think you are in an early stage. If that being the case you are very lucky.

Keep us posted on your progress.

Maryanne

[mhutch1366]

Hi jang,

Welcome, I am glad you found us.

I also lost my upper left lobe, and a bit more. It is fortunate that you can have VATS. UMBC is good. Do you have a good oncologist? Consider the option of chemo as a form of systemic insurance to prevent recurrence. Easier to do it now than regret later.

I will keep you in my prayers;

you are one of the lucky ones, diagnosed early and able to have VATS.

Good luck, and keep us posted.

XOXOX

Prayers,

MaryAnn

[J.C.]

Jan,

you got the best answers from the previous posts,

all I want to add is some prayers for you and also

Bill, for next week.

J.C.

[dadstimeon]

Welcome Jan, Prayers all will turn out for the best. Rich

[shineladysue]

Jan,

Welcome to the group. I just want to let you know that you will be in my prayers for your surgery on Wednesday. My husband had his pneumonectomy (entire lung removed in April of 2001). He did very well through surgery and recovered well. It took time and patience to regain his strength, but his surgery was more extensive than yours. If I can make one recommendation, it would be to go with follow-up chemotherapy. It was offered after my husband's surgery, but he refused it. 3 years later he was diagnosed with stage IV cancer . Whether the chemotherapy would have prevented it or not, who is to say (even the oncologist said he couldn't say). He had followups by scans and xrays... The xrays didn't pick up the cancer and they were farther and farther apart as he got toward 3 years. Just push for a close follow up and pay attention to anything that doesn't seem right. It sounds like you are one of the lucky ones that stands a chance for cure and to be here for many years to come.

God Bless you.

Sue

[Cindy RN]

You are at good place for support.

Good luck, Cindy

[Don M]

Hi Jan: I see you have received a very nice welcome at this point. Yeah, it does sound like you are one of the lucky ones.

I would also like to add a caution that you consider a follow-up of chemotherapy, especially if you are staged at IB, which would be a larger stage 1 tumor.

I was staged at Ib in Jan 2004 with an upper left lobectony and by Feb 2005, it was determined that I had another tumor in my remaining lobe. I did not have chemotherapy the first time.

In February 2005, I had the rest of my left lung removed, and was staged Ia. The docs did not know for sure if it was recurrent or a new cancer. I have heard that about one third of all recurrences are local cancer. Anyway, I asked for chemo the second time. I am 4 days into my first round now, and it is ok so far.

Of course, I will never know for sure if having chemo the first time would have made any difference or not.

Don M

[Tiny]

Jan

Good luck and welcome to a great bunch of LC survivors and their supporters.

I, too, would like to encourage you to get at least a second and maybe a 3rd opinion from an ONCOLOGIST who has a specialty in LC regarding the decision of follow-up chemotherapy.

Keep us posted.

[jang]

Thank you all for the support. I will definitely see an onc after the surgery, even if my doctor tells me that I don't need too. Do oncologists specialize in certain types of cancer? Should I look for a lung cancer specialist? Or do they treat all cancers? I am so nervous about Wednesday. I just keep hoping that they can do the VATS. He said that I have a 2 out of 3 chance that he can do the VATS. I'm so glad I found this support group.

Jan

[cindi o'h]

Hi Jan. It is my understanding that all oncologists have the ability to treat lung cancer. They treat all kinds of cancer as well as blood disorders if they are onc/hemotology as many are.

However, there are some who just "like" to treat lung cancer and have a special interest in treating lung cancers.

I have an onc who does lung cancer research specifically. He does treat more than lung cancer, however, most of his patients are those with lung cancer.

Our oncodoc who was on board for several months was one of those docs who took a special interest in lung cancer.

You might fare well by asking a local university or asking locally which doctors exel in treating lung cancer.

As far as I know, it is not a sub-specialty, but rather a special interest to some.

Best of luck with your surgery tomorrow.

Cindi o'h

[Maryanne]

Hi Jan,

I posted before but I just wanted to add something. First of all, I definitely agree that it is imperative to see an Oncologist after the surgery. First word of mouth,if you know someone who uses an Onchologist, or a good hospital in your area that caters to Cancer. Or check the internet and look up their bios. It may take awhile to get an appointment, so do it ASAP so you don't have to wait too long after your operation.

Also, this concerns me, your doctor, which I assume is your thoracic surgeon says you won't need chemo or radiation.

Let me give you my husbands case. He was diagnoised early with stage 1B (B because it was bigger than 3 cm) he had a lobectomy on his upper left lobe. His lymph nodes ( which is bisopied during surgery)I don't recall how many lymph nodes they tested but they all came out NED (No evidence of desease) which kept his stage at 1B. If one lymph node is infected it adds to the stage. If two adds more etc. So, we were estastid when the surgeon told us he got it all. Great!!

He then went to his Oncologist after surgery and he recommended adjuntive chemo ( preventive) even though they got it all and his CT scan was NED. When you get the adjuntive chemo it adds to the % rate of non re-occurance. So right now his % rate is 65% with the chemo it adds another 5 %. I know that does not sound like a lot but hey, I'll take 70% anytime.

There is a person on this board name Don, who had the same stage as Joel, he opted not to take the adjuntive chemo and he had a re-occurance and just had another lobe taken out in Jan. He said if he had to do it over again he would definitely take the chemo. That is one of the reasons that pushed us towards taking it.

So Joel just started his first chemo last week. He has 2 or 3 more sessions.

Good luck with your surgery. I really hope your doctor can go the VATS way, as I heard it is pretty painless and a fast recovery. But if you have to go the regular surgery route, well so be it. The main thing is to get that thing out, period!!

Take care and keep us informed.

Maryanne

[Ry]

Welcome..

You've been given some excellent advice. Good luck with the surgery.

[chloesmom]

Jan,

I too had the upper left lobe of my lung removed, when I was 47 years old as well. I did not get the VATS surgery, I don't know why, but I had a throacotomy, with only about a 4 inch incision. Surgery was traumatic, but I did recover relatively quickly, spending 3 nights in the hospital, and then after going home doing a little more every day until I was released back to normal activities (office work) in two weeks.

I was a stage 1B and had my surgery and treatment just weeks after the studies were released that confirmed a benefit to chemotherapy after surgery for early stage (not 1A) patients.

I did the chemo and have no regrets. I just wanted to give everything I had to getting the cancer out and keeping it out the first time around.

Like you, I was terrified, but now, nearly two years have passed, and I feel fantastic. I'm working out at least as much as I did pre-cancer (maybe more). I eat better, am finally losing the weight that I gained with treatment, inactivity, anxiety, etc. and I hope the same thing for you.

Good luck--stay with us. We need to get the updates from you.

Cindy

[ellakc2]

Hi Jan,

This is a great place for support. Good luck to

you tomorrow it sounds like your in good hands. Will

pray for you. Take care.

[jang]

My surgery went great on Wednesday. They were able to do the VATS and I was home on Sunday evening. I'm feeling pretty good, can't go up the stairs very well, but walking around well. The doctor says he doesn't want to see me for 4 weeks. Is this normal? Should I see an Oncologist before that? I won't have the pathology reports until early next week. They are assuming stage 1A.

[daggiesmom]

That's great news about your surgery going well. Keep us posted on how you're doing.

Joanie

[Patkid]

Welcome home and all the best.

Pat and Brian

[Maryanne]

Hi Jan,

WELCOME BACK!!!!

I am elated that you had VATS you are very lucky and should fine.

I imagine your surgeon took biospys from your lymph nodes. You have to wait for them to come back to see if they are clear. If so you will stay at stage Ia. If you are IA then probably (not exactly sure, but pretty sure) that adjuntive chemo (preventive) will not be needed. I think it is done for IB and above.

You should set up an appointment with an Oncologist anyway. It could take a month before you can see him or her. Following up with an Oncologist after survery is needed. He will tell you if you need any treatment.

I am so glad you are doing well. Keep us posted.

Maryanne

[Don M]

Hi Jan: if your pathology comes out IA, you probably won't need adjuvant chemo. I have heard that the 5 year survival rate for Ia is so high (around 90% I think) that follow up chemo is redundant. Some IA survivors do it anyway. I think if you approached an oncologist and told him you wanted follow up chemo, he would likely do it. Here's hoping it is Ia for you!

Don M