Just diagnosed and anxious about surgery

[Marilyn Raven]

Thanks for accepting me into your forum.

I have a small slowly growing nodule now 14mm not big at all I know, but where it is is a problem as I cannot have VAS and will have to have open surgery, to have it tested and then if cancer 1/3 of my right lung removed.  I am 73 74 in June in quite good health but really worried about the surgery and recovery, if anyone here has had this type of surgery I would love some feedback as to what I might expect and how easy/difficult it may be to recover, The nasty little beast is deep in my lung near my pulmonary artery which is why the surgeon cannot do a needle biopsy so I opted to wait and see it has grown 2 mm in 6 months so it needs to be treated but I am crapping myself about the surgery.

Cheers Maz (Australia)

PS I have read a few posts on surgery and see that some people have had a lobectomy without a biopsy, and it has made me wonder that if I were to request this option whether I could have a less invasive op and lose 1/3 of my lung which on balance is likely to happen anyway, it's the major surgery that's freaking me out at my age, I have had uterine cancer 1B had a hysterectomy and just 4 radiation treatments and no recurrence so fat now in my 4th year, this is a separate cancer? probably because I was a former smoker I just thought I would add this, and I would appreciate any thoughts anyone may have about this idea, so far it's been we will take a sliver send it off while I am out and then remove part of my lung if need be or otherwise just stitch me up, am I crazy to be thinking like this?

[BridgetO]

Hi Marilyn and welcome,

No you're not crazy; you're just in a cancer whirlwind.  I had a nodule which was a little smaller than yours ( 11 or so mm if I recall correctly.) I couldn't have a needle (or a broncoscopy) biopsy either, because of the location of my tumor. I , too, had a prior gynecologic cancer, stage 3 , either cervical spread to the endometrium or endometrial spread to the  cervix, plus metastasis to one or two lymph nodes. Uncertainty was due to 2 pathologists with different opinions.  For that  one I had a radical hsterectomy wit

Hey Marilyn, sorry, I lost several paragraphs in cyberspace and since it's late here, I'm too tired to recreate them now, but will do it the AM. Lots more info coming!

Bridget O

[TJM]

Marylin

First. We dont accept people, we welcome them. Welcome.

My pulmonologist suggested to skip a biopsy and go right to a lobectomy. I totally agreed. The biopsy itself is almost as bad as surgery. So that's what we did.

Wishing you the best

Peace

Tom

[BridgetO]

OK, Marilyn, here I am back!

For the gyn cancer, I had a radical hysterectomy and raddiation and chemo. I had CTs to watch for possible recurrence and in one a small nodule was found. In a 3 months follow-up CT it was found to have grown.  I had a PET scan and nothing lit up. Small, slow growing tumors sometimes don't. There was a questiona about whether it was a metastasis from my prior gyn cancer (or even from an earlier stage 1 breast cancer, My pulmonologist said that it didn't look like a met, because those are typically more round/smooth edged and often there is more than one. My nodule was a single one and spiculated (spiky), typical of a lot ot lung cancers. 

It was recommended that I have a lobectomy. Because of it's location not near the edge of the lobe, It couldn't be removed by a smaller surgery like a wedge resection. So I had a lower right lobectomy by VATs. The surgery was pretty easy, especially compared to my gyn surgery for whcih I spent a weej=k in the hospital. With the lobectomy, I was discharged the following day. My nodule was non-small-cell cancer (adenocarcinoma) Stage 1a. i didn't need any further her treatment, but I do have  regular follow-up CT  scans. I'm NED (no evidence of disease) on all 3 of my cancers. (10 years  on the gyn, 4 years on the lung).

Are you comfortable with the opinion that you're not a candidate for VATS or robotic surgery? Those are a lot less invasive and have faster recovery than open surgery. You could consider getting a second opinion if you haven't already. You should do fine with either surgery  since you're in good health. I was 71 at the time of my lung surgery.

Stay in touch here. Ask us any questions you may have and let us know how we can support you. That's what we'r here for!  We have a lot of suggestions about getting ready for surgery and recovery afterwards. 

Bridget O

[Marilyn Raven]

Thanks so much for your reply Bridget. I have had only one appointment with the surgeon,  I have a wonderful Radiation Oncologist,  he said that if it wasn't as close to my Bronchial tube he could do with targeted radiation but he is concerned about burning a hole in it,  he will be taking my case to the Cancer committee at the cancer centre I am attending.  I am not sure if the surgeon was erring on the conservative side not wanting to remove part of my lung unless needed or was saying that it couldn't be done at all, however I have decided to get a second opinion, it's always a good idea when faced with something this challenging.  I have had this small nodule ever since my first scan for radiation but they were focused on the gyn cancer it wasn't until my 2 year follow scan that my Onc decided to send me for a PET it came back mildly hot, so he referred me to the surgeon who I saw in November and then had a follow up scan 2 weeks ago and saw my Onc last Thursday, he is not keen for me to have this major surgery either. My feeling now having read a number of stories here is that I might be better off losing the middle of my right lung with VAS and having a better recovery,  than going through the big surgery which could easily end up with the same result,  it might be a different story if I were 20 years younger but serious surgery in my 70's feels like something to avoid if at all possible.

I am so glad to have found this community it has helped so much already. I will keep you informed of my progress I actually feel quite confident that if it is cancer and I think it is it will be low grade, my Oncologist thinks so too so surgery should be the end of it, fingers crossed. I am happy to trade a part of my lung for a better recovery and a quicker return to normal life.

Blessings

 

[Marilyn Raven]

Thanks Tom,

I think that will be the direction for me too, I will seek a second opinion and also speak to the surgeon I saw at the Cancer Centre, perhaps he was being very conservative but I am sure if I am willing to trade a part of my lung for a quicker recovery I will be better off in the end. I have written a longer reply to Bridget which explains my journey and my feeling about serious surgery in my 70s.

Blessings  

[LouT]

Marilyn,

Welcome to our forum.  We're glad you found us.

Please seek any other opinions you feel are needed.  It's perfectly acceptable that you feel comfortable with the treatment prescribed by your team.  In the meantime, if surgery is inevitable then there is some information here (click on the word "here") that will help you to prepare for, get through and recover from lung surgery.  Having had it myself, I'm more than glad to offer any experience of mine that will help you to go through the process. 

Lou

[Marilyn Raven]

Thanks so much for your reply, yep I think it will be surgery it's just which kind, I am going to opt for keyhole type as it seems to be an easier recovery than the open surgery, I would take the precision radiation if it were possible, but it's not an option for this one it's in the wrong place, I trust my oncologist and he is very skilled.

Anyway next step is a second opinion from another surgeon, fingers crossed that I can opt to lose the middle lobe of my right lung without a biopsy. I have had this nodule for 4 years that I know of and it has grown about 5mm in that time so it's a very slow growing beastie but time to get rid of it as it's now 1.4 cms. I am not looking forward to this at 73 but hey I made it through my first 70 without any surgery at all, so I feel blessed, fingers crossed all will be well. When I know what is going to happen I will welcome any helpful tips you can share.

Blessings

Maz

[BridgetO]

Marilyn-

Lou's tips are great! And FYI, I had my lobectomy when I was 71.

[Marilyn Raven]

Thanks Bridget

I am waiting now to hear from my oncologist who will relay what the cancer team has to say, and I am seeing my GP tomorrow to get a referral to a  surgeon for a second opinion, although I think the first doc was being conservative in not wanting to remove part of my lung unless it was necessary, he may have a different view now that it has grown a little I am sure that it is a cancer and would like to get rid of it ASAP but with VATS not open surgery so fingers crossed I will get it sorted over the next month, I will keep posting as things go along.

I saw the post today from  the the poster in the UK, I know what she means about the English not wanting to talk about things I cannot find a forum in Oz either, I had no trouble for my Hysterectomy, but lung cancer seems to be something people don't want to discuss, I think that many people see it as a death sentence.

This has freaked my daughter out a bit she is 55 and an ex smoker too I have suggested she ask her doc for a baseline scan and then it can be monitored,  because the sooner it's found the better the chances,  I would have no idea I had this if I hadn't been getting scans because of my other cancer, and goodness knows how big it may have got before I noticed anything was there, I think all ex smokers could have regular scans perhaps every 2  years like breast screening anyway I digress.

Blessings

Marilyn

 

[Marilyn Raven]

Hi Bridget. 

Just a quick update, I saw my GP this morning and he suggested waiting for the Cancer Team meeting to see what they suggest if the option doesn't change he will refer me to another surgeon, so now I wait and have my lung function test to make sure I am a fit candidate for surgery I am sure it will be okay but you never know.  I appreciate your interest in my progress along the path.

Blessings 

Marilyn  

[LouT]

Marilyn,

Thanks for the update.  The waiting is always hard at this time in the treatment plan.  For my part I both feared the oncoming surgery while also fearing that the wait would put me in further jeopardy.  I'm glad to report that neither of those fears were realized.  Stay busy, focused and do not think ahead too much and all will unfold for you as it should.  Since you are pretty healthy your overall recovery should be done successfully over a shorter time.  In the meantime; take some points from the "Tips" I sent you.  For example, buy a wedge pillow (highly recommended), make sure you have someone who can check on you when needed and stay in touch.  We're here to answer any questions you may have along the way.

Lou

[Marilyn Raven]

I finally heard from my oncologist last week he is sending me for another PET and the surgeon refused to just go straight to a lobectomy and wants to do it with an open surgery to see if it is cancer, I have a strong feeling it is a very slow growing cancer, so I said no!  My oncologist said he might refer me to another surgeon if not I will go back to my GP and get a referral from him. I have decided that I do not want an open surgery for such a small tumor so I will look until I find a surgeon willing to operate without a biopsy, still concerned about surgery but I am sure I will recover better from VAT than open, I have had spirometry done and my lung capacity is normal for my age so I should survive okay. Fingers crosses that the PET does not look worse than last August and that I can get this over and done with and get on with recovery. I continue to read here and have found the information and support on this forum just wonderful I am grateful to have found it as there seems to be nothing like this in Oz. Sending good thoughts love and blessings to all.   

[LouT]

Marilyn,

Please let us know how this turns out.  I will never fault a person for following their better instincts, but you definitely need a second opinion to insure that your decision is sound.

Lou

[BridgetO]

VATs is a lot easier than open surgery. I hope you're able to have it. Keep us posted.

[Jesse L.]

I had VATS surgery to remove my RLL on 2/25 and compared to the open surgeries I've heard of it is much, much easier in every aspect. In my case through with scans and a bronchoscopy they knew it was an 18mm X 12mm adenocarcinoma. I know that sounds small but because of where it was (near a blood supply from the heart) they felt it best to remove the entire lobe. Well, they got it all but while they were in there they found a couple of affected lymph nodes. So, while they were in there they removed them too. That brought on more scans and and an MRI and with all that they could find nothing else. But that doesn't mean there's nothing there... So, I start chemotherapy tomorrow to make sure there's not any little stray bad cells hanging around looking for a home.

With all the above just a little counsel here,

1. You might end up with a surprise and that may be good or bad... What they found in me once they got in there showed up on no prior scan, CT or PET. The explanation I was given was that even with contrast given slow growing cancers don't "light up" during a scan. In fact, my cancer team went on to tell me that if I were in my late 70's into my 80's (I am 64) they probably wouldn't bother with this at all; I would just be monitored. They elaborated by explaining that when people get older their blood circulation slows so much so that that condition basically starves tumors of the liberal blood supply they need to grow. Ergo, chances are older folks with certain types of slow growing cancers will die of old age years before that cancer would kill them. 

2. Make sure whatever you and your team decide about surgery gives you the best chance to remove the cancer completely. Yes, VATS is much better, but you have to do what's in your best interest and that is to shoot for NED. I have heard stories of cancer that can't be removed completely with surgery and then follow up treatments are required whether that be radiation, chemotherapy, or whatever. Mind you, everything you will do is a balance between the treatment and it's side effects. So whatever you and your team decide, base that decision on the best outcome with the least problems, now and or later.

Ask a lot of questions, become so very informed so that you will become your best advocate. Make the best decision possible and then commit... Keep us informed and know that we are pulling for you. While we are not "medical professionals" we know how you feel and that's really important too!

[Marilyn Raven]

2 hours ago, BridgetO said:

VATs is a lot easier than open surgery. I hope you're able to have it. Keep us posted.

Thanks Bridget, that's my been my research too, my oncologist isn't keen for me to have open surgery either, because he understands how serious that is and for me at my age almost 74 he is trying to avoid it if possible. The surgeon didn't want to speak to me when  my oncologist called him to ask whether he would consider VAT and skip the biopsy, he came back to me and said he doesn't want to see you and told me to continue to monitor and then he said I think I might send you to another doctor, which I am happy about because the fact that he doesn't want even discuss with me his reasoning about why he is insistent on open surgery doesn't fill me with confidence so I will be seeking another doc either through the Cancer Centre of via my GP. I hope I can get an an answer soon because the waiting and the mess around I could live without. I will keep you posted after my PET Monday 11th I expect to hear back from the oncologist a couple of days later. Fingers crossed that the PET is not worse than before, I have no symptoms at all so I have no idea. Thanks for your reply and be well, blessings ❤️ 

 

[Marilyn Raven]

1 hour ago, Jesse L. said:

I had VATS surgery to remove my RLL on 2/25 and compared to the open surgeries I've heard of it is much, much easier in every aspect. In my case through with scans and a bronchoscopy they knew it was an 18mm X 12mm adenocarcinoma. I know that sounds small but because of where it was (near a blood supply from the heart) they felt it best to remove the entire lobe. Well, they got it all but while they were in there they found a couple of affected lymph nodes. So, while they were in there they removed them too. That brought on more scans and and an MRI and with all that they could find nothing else. But that doesn't mean there's nothing there... So, I start chemotherapy tomorrow to make sure there's not any little stray bad cells hanging around looking for a home.

With all the above just a little counsel here,

1. You might end up with a surprise and that may be good or bad... What they found in me once they got in there showed up on no prior scan, CT or PET. The explanation I was given was that even with contrast given slow growing cancers don't "light up" during a scan. In fact, my cancer team went on to tell me that if I were in my late 70's into my 80's (I am 64) they probably wouldn't bother with this at all; I would just be monitored. They elaborated by explaining that when people get older their blood circulation slows so much so that that condition basically starves tumors of the liberal blood supply they need to grow. Ergo, chances are older folks with certain types of slow growing cancers will die of old age years before that cancer would kill them. 

2. Make sure whatever you and your team decide about surgery gives you the best chance to remove the cancer completely. Yes, VATS is much better, but you have to do what's in your best interest and that is to shoot for NED. I have heard stories of cancer that can't be removed completely with surgery and then follow up treatments are required whether that be radiation, chemotherapy, or whatever. Mind you, everything you will do is a balance between the treatment and it's side effects. So whatever you and your team decide, base that decision on the best outcome with the least problems, now and or later.

Ask a lot of questions, become so very informed so that you will become your best advocate. Make the best decision possible and then commit... Keep us informed and know that we are pulling for you. While we are not "medical professionals" we know how you feel and that's really important too!

Thanks for you reply I appreciate you sharing your experience,  indeed there are often surprises both good and bad with cancer treatment, I always hope for the best and try not to focus and what else may happen and just deal with whatever arises as best I can.  I am 74 so I am hoping for the least invasive procedure that I can have, the surgeon that I saw last year doesn't appear to be interested in discussing a different option to the open surgery where he will take a small portion send it off and then if it is a cancer he will take the middle lobe of my right lung, my preference is to skip the biopsy and just do the surgery with VAT the fact that he won't discuss this with me doesn't fill me with confidence and seems a wee bit authoritarian so I don't know if he has a good reason or not, so I think a second opinion is my best plan. I will write here again when I find out what the next step is fingers crossed I can het some answers.  I wish you well with your treatment and hope that is is successful. 

[Marilyn Raven]

3 hours ago, LouT said:

Marilyn,

Please let us know how this turns out.  I will never fault a person for following their better instincts, but you definitely need a second opinion to insure that your decision is sound.

Lou

Thanks Lou I will post again when I get some news, I just find the fact that the surgeon isn't interested in explaining his decision makes me feel uneasy, if he would be prepared to explain why skipping a biopsy and going straight to VAT surgery is not an option I would like to know his reasons, perhaps he is one of those docs that wants the patient to do as they are told, I will look for another surgeon who will be prepared explain all my options, this is way too serious at 74 not be be my own advocate, BTW my oncologist seems to agree with me, and spoke briefly to the surgeon but the surgeon just told him to keep monitoring me, a second opinion seems best to me. All the best to you,  stay well Maz

 

[BridgetO]

Hi Marilyn, It does sound like you need a different surgeon. There may be reasons in a particular case why open surgery is needed instead of VATS, but it's outrageous that the surgeon qont share his thoughts on in. "Because I said so" isn't a good reason. Is this maybe an old surgeon who doesn't have experience with VATS?

[Marilyn Raven]

Hi all.

Here I am again I have surgery booked 10th June 1 day before my 74th birthday, so survival,  no complications  and a smooth recovery would be a great birthday gift for me    my fingers are crossed.  Sadly though it will be an open surgery,  yesterday I saw a senior surgeon a Professor, and he has explained to me why I have to have an open surgery this tumor is too close to my pulmonary artery for VATS but he says I will not notice any difference as he will keep the incision small and on my right side not my back I hope he is right as I am not looking forward to this at all,  but I  have to keep walking and hope for the best, just as we all do.

The PET showed it had grown 2mm since last September and the SUV has gone from 1.6 to 2.7 so time to get rid of the little menace,  it's under 2cms and very low grade so all being well and no surprises, I am hopeful  no further treatment will be required.

 

Thank you all so much I have found this forum so supportive and hopeful, for a girl all the way over the sea in OZ.

Blessings and love to all you brave men and women survivors.

Maz ❤️  

[Jesse L.]

Hello again... While it wasn't quite what you wanted, it is so much better to be working with medical personnel who take the time to tell you what they plan on doing and why. Even though my affected nodule was only 1.8 mm by 1.2 mm I was told by my surgeon that he would have to remove my entire RLL because of where it was with respect to the vascular system supplying it. Why is it that some medical professionals find it so hard to relate to patients I'll never know. But as patients we have the right to know everything that is happening and that's all there is to it.

I hope that things turn out as well or better than you expect. And yes no one wants to do any of this at all, but we all do what we must to live. Life is never so precious till it's threatened... Stay in touch and let us all know how it went. Never forget that you're a survivor too!

[Marilyn Raven]

37 minutes ago, Jesse L. said:

Hello again... While it wasn't quite what you wanted, it is so much better to be working with medical personnel who take the time to tell you what they plan on doing and why. Even though my affected nodule was only 1.8 mm by 1.2 mm I was told by my surgeon that he would have to remove my entire RLL because of where it was with respect to the vascular system supplying it. Why is it that some medical professionals find it so hard to relate to patients I'll never know. But as patients we have the right to know everything that is happening and that's all there is to it.

I hope that things turn out as well or better than you expect. And yes no one wants to do any of this at all, but we all do what we must to live. Life is never so precious till it's threatened... Stay in touch and let us all know how it went. Never forget that you're a survivor too!

Thanks Jesse,

Yes I agree about the communication I had a muddled conversation with the first doc which is why I decided to wait, and have another scan, anyway I feel it's for the best because although this surgeon is older than the other one, he is a professor and very skilled and experienced and he had a very calm manner and  direct clear communication.  It's scary stuff but I am taking deep breaths and reminding myself of how lucky I am to access to good medical as you do in the USA.  so many people in the world are not so lucky, so I count my blessings and smile it always makes me fell better even if it's hard to do sometimes.

Good health and happiness to you.

Blessings 

Maz   ❤️

PS. I noticed my nodule is almost the exact same size 1.4 x1.8 and is near my pulmonary artery and the margin of my middle lobe so who knows what I will end up with when I awaken from the deep sleep. Fingers crossed tis all I can do oh and smile as often as possible. 

[LexieCat]

Surgeons ALWAYS remove the entire lobe when they can (assuming the patient can tolerate it) because it's the best way of ensuring there is no remaining cancer to spread. No guarantees, ever, that it won't anyway (case in point) but it reduces the odds.

My guess is that you'll do just fine. Lots of folks here have had the "open" surgery and come through it without serious problems. Recovery might be a bit longer, but it sounds like the surgeon will minimize the cutting.

Good luck and keep us posted!

[Marilyn Raven]

12 hours ago, LexieCat said:

Surgeons ALWAYS remove the entire lobe when they can (assuming the patient can tolerate it) because it's the best way of ensuring there is no remaining cancer to spread. No guarantees, ever, that it won't anyway (case in point) but it reduces the odds.

My guess is that you'll do just fine. Lots of folks here have had the "open" surgery and come through it without serious problems. Recovery might be a bit longer, but it sounds like the surgeon will minimize the cutting.

Good luck and keep us posted!

Thanks so much Lexie,  so far he is talking about just taking a piece of my RUL but won't decide until he looks, he is Malay and has small very fine hands that and he seems to be a type for fine detail perhaps that's why he can keep the incision small, he said I won't notice much difference I sincerely hope he right, but in the end I have no choice but to surrender to the process and hope for the best. 

I have been reading your posts and I hope that everything works out, I am sending you good vibes for a great outcome, and thank you for the encouragement.

May the force be with you 

Blessings 

Maz ❤️