New to Lungevity ~ Lung Cancer ~ Terrified and unsure re: treatment

[ColleenRae]

Hello... My name is Colleen. I will be 60 y.o. this month. I have been a single mom for the past 17 years and have one son who is 20 y.o. and on the Autism Spectrum... He is my joy and my rock!

Lung nodules discovered in Dec 2016 via a CT. I've had them followed since. Most recent CT was last month, July 18th, 2018. One nodule in RUL has not increased much in size but is becoming more dense. Dr/Clinic I've been going to say they are certain it is probably adenocarcinoma and the next step is surgery. They are guardedly stating this is a Stage 1a tumor. They said the nodule is too small (I got two answers re: the size - 8mm and 10 mm) and in a difficult location to biopsy (inside center of upper lobe, near center of chest, bronchi/heart). I was referred to a surgeon at the Univ of WA Medical Center. I met with the surgeon and he said surgery - a lobectomy - preferably VATS if possible - is my only choice for long term survival.  I have two other nodules they are watching - one located in each left lung lobe. They are small and subsolid from what I've been told. I've been told my lungs are functioning "near normal" and I'm a good candidate for surgery.  I still have to have a PET scan though, which was just scheduled but not until mid-September.

I am terrified. I have been reading non-stop online re: lobectomies... the pain of the procedure and quality of life post-op. WHY would I want to go through this if there is no guarantee that cancer won't come back in another lobe? I've been told the 5 yr survival rate for my stage/size is close to 90%.  I've also been told that the tumor I currently have is slow growing so far and might not even be cancer, but they are pretty sure it is from appearances. But, it could continue to grow slowly and not cause any problems.  So, I'm thinking... well, maybe I could live with this tumor for at least the next 5 years without any problems... I would rather do that than live approx. 5 more years with a lower quality of life / pain after a lobectomy... Wouldn't I???

There is a lot more I want to discuss / ask for here... but I will start reading and searching posts here.  I don't know what to do. I have no one - no family / friends to help care for me after surgery. Only my loving disabled son... he does not drive or grocery shop alone. He said he will take the bus to buy us food and cook... he wants to help so much, but I hate to put him through this (he is supposed to start his second year of college in September). I'm afraid it will be too much for him and that he won't be able to provide me with the help I'll need to recover.  I've never been so scared or felt so alone in my whole life.  We just moved to our new home/city 2 years ago so he could go to college here.  I would have to travel out of our area to have the surgery, which also poses complications.

Right now I feel like I have 3 choices:  1) Get the lobectomy and hope for the best; 2) Don't have surgery and just let the tumor grow and hope it grows slowly for a long time before any problems arise. Then I'll deal with it through hospice but hopefully have more years with a better quality of life vs after surgery; or 3) Don't do anything but make a plan - either legal euthanasia or my own plan to end this when it starts to get bad so that I don't put my son through the pain of this or myself. I want to have hope, but in all honesty, I have none right now. 

Would really like to hear from others who have had a lobectomy to help me in this decision... thank you.

[Mally]

Hello Colleen I'm sorry for your situation but your in a good place for some very good advice from people that have been in your situation ...I had a lobectomy and wedge taken January last year and I had the open cut method and it was a painful time for a few weeks but with the meds it was bearable and now I dont feel any different than before surgery with no shortness of breath or congestion and I was diagnosed with stage 3A ...the thing I learnt first was not to get into the 5 yr survival statistics because that's very outdated now and there are many long term survivors on here that prove just that ...I would want to know if its definitely cancer and what type by biopsy before going the surgery route ...others with more advice will chime in soon so I wish you all the best whatever you decide ..

[ColleenRae]

Mally,

Thank you so very much for your reply and information... I am VERY grateful. Was just going to hit the sack and checked email... so glad I did.

Thank you for sharing a bit of your experience. Yes - your words made me feel more hopeful and that I might be willing or able to do this.  After all I've been reading, I should be glad this was at least caught early at this point - at least small tumors!

I really liked what you said about not getting into the 5 yr statistics... thank you for that.

Yes, I want to know if this is definitely cancer as well but they've told me a biopsy won't be possible due to the size and location of the tumor... I'm seeing a local pulmonologist this coming week to see what his thoughts are on this.  I'd much prefer a biopsy before going through the lobectomy, but if it's not possible, I'm not sure what other choices I might have.

Thank you, again.  I do feel very much alone in this journey - I used to be a very social, outgoing, energetic person... But, I have a lot of trouble with depression and have isolated myself for  years using the care of my son / his autism as an "excuse" I think.  I am hoping this site will be helpful (it sure looks like it will - I couldn't stop reading post after post here!) and maybe I won't feel quite so alone.  I have a lot of guilt about this being brought on by myself... I smoked off and on for almost 40 years. I did quit cold turkey, but I'm sure the damage was already done. Also grew up in a smoking household - both parents. I hate cigarettes now and can't stand to be near the smell... I know what's done is done, but I'm feeling pretty awful about the choice I made to keep smoking for so many years.  My son hated it - you'd think I would have quite for him if not for myself - but he's been very forgiving. 

Anyway, I need to hit the sack.  Again, many thanks for your kind reply.

[Laurel]

I had VATS February 16 of this year. VATS is the only way to do this surgery. It is less invasive and pain is not bad. I had upper right lobe removed on a Friday...up and walking that night. I left the hospital on Sunday. There was no pain at 4 little incision sites. Pain was in muscle areas and well controlled by garbepentin pain meds and salon pas lidocaine patches. They want you up and walking daily. It may help to connect with a local church to get help getting groceries and cooking. I kniw this is scary. Sending soft hugs.

[LexieCat]

Hi, and welcome.  Let me add my own "me too" to the descriptions of lobectomy via VATS as a virtual piece of cake (as surgeries go).  I was 60 when diagnosed, and, like you, nodule too small to biopsy but highly suspicious appearance (and lit up on PET scan).  I had a very minor complication that led to my being re-admitted after being initially discharged--nothing too serious but very uncomfortable--air leak into the skin under my chest.  I was back in for 3-4 days with a chest tube to properly "deflate" and I was fine.  

I was back at work a week after my final discharge, going out to concerts with friends a week after that.  I have noticed ZERO impact on my breathing and the only thing I feel related to the surgery is the slightest twinge when I inhale sharply.  

Mine wound up being staged Ib after surgery due to pathologist's conclusion (which my surgeon disagreed with) that there was some invasion of the pleura.  For that reason it was a toss-up whether chemo would do any good at all, so I opted to pass on it (for Stage Ia chemo is likely to do more harm than good so it's never recommended).  So I just get scans every six months to be sure everything stays happy.  I have a few other nodules that show up or disappear on subsequent scans--they watch them but don't seem especially concerned about them.  The majority of lung nodules are not cancer--they are inflammation or scar tissue most of the time.

We have a "surgery" forum here where you can find some additional posts specifically related to surgery.  Cancer is ALWAYS scary, but the lobectomy really isn't anything to fear.

[Steff]

ColleenRae,

Welcome fellow Washingtonian.  My mom had the 'ol regular, barbaric lobectomy.  She had her right upper lobe removed in January 2016.  She had to stay in the hospital for about a week due to her chest tube being removed too soon and had to have another one put in.  She had 1 really bad day after the new one was put in, other than that, pain was controllable with OTC pain reliever.  She was up and walking in 2 days and breathing better than she had in years!  The lobectomy removed most of the emphysema she had and her lungs worked better than they had in a long time.  Recovery wasn't too bad.  She is the caregiver for my dad who has a movement disorder.  Caring for him is like caring for an adult toddler most days - falling, making messes, wanting food, etc.  She was able to take care of him with no problem when she got home.  She just had to watch lifting things for awhile.

I think her biggest issue after the surgery was finding a bra that didn't rub the big incision. But VATS does not have the big incision that my mom had.  Now she doesn't have much problem.  She periodically has shoulder pain likely due to the incision/lobectomy, but it is controlled by OTC pain reliever.   

So, here is an example of someone who had more invasive surgery and who is also a caregiver.  My mom (and dad) did just fine through the procedure and recovery.  If you decide to go ahead with the surgery, I bet you will do just fine too.

Take care,

Steff

[eric byrne]

Hi Colleen,Welcome to LCSC,sorry to read about your Dx,this October I will celebrate my 10th anniversary in surviving Lung Cancer.A tumour was found in the airway leading to my upper right lung in Oct 2008,this had the effect of collapsing the lung and led to my having neo-adjuvant chemotherapy aimed at reducing the size of the tumour which if successful would allow me to have a upper right lobectomy.Well the chemo worked a treat and I had my lobectomy in Jan 2009.Prior to the commencement of my treatments I had all sorts of anxieties about the effect the treatments would have on me,would the chemo make me ill,will my hair fall out,will the proposed surgery be extremely painful and leave me a breathless invalid,what if it dos'nt work and my cancer came back?,These and a few other worries filled my brain,which I have now quite forgotten.Following my surgery I made a full recovery and returned to work.Since my surgery I have not received any further treatments other than the 6 monthly check ups for five years.The last one my Doc told me all my tests were clear,no sign of any cancer remains within my body.Further he went on to say he had every confidence in telling me I was cured ,now go away,I dont expect to see you again.We shook hands and parted as friends.I also have to say for all my anxieties about my treatments I sailed through the lot with ease.I wish you to share my success with your treatments.

[Susan Cornett]

Colleen,

Welcome to our little corner of the world.  Let me add my two cents to this conversation.  First, throw those dang statistics out the window.  They are generally 5 years old and do not account for new and/or improved treatments, nor do they account for your health.  They incorporate people who opted to skip treatment or didn't finish treatment which, in my opinion, does not provide an accurate picture.

I had the old-fashioned lobectomy to my left upper lung in February 2016.  Yes, it sucked but I started chemo three weeks after it and was back at work four weeks after the surgery.  Pain can be managed.  But, if you have the option of VATS, I say go for it.  

Only you can decide what is best for you and your situation but if it was me, I'd get everything out that walks or talks like cancer.  It's not an easy road, but it can be traveled.  I'm 2.5 years into this and about to start treatment for a recurrence.  With minor exceptions, I've worked and played the whole time.  It can be managed so please don't throw in the towel yet. Get your PET scan results before you make any decisions. 

[ColleenRae]

Thank you to everyone who has taken the time to respond to my post... I am more grateful to each of you than you will ever know.  I'm not sure how to reply to each person individually yet (I don't have much experience with this format!), so hopefully you will see this and know that I have read every word that has come my way... All very helpful and encouraging. Probably the biggest thing I've benefited from in this so far is learning how many of you / how many others have had this procedure and you don't sound as if it was the wrong decision at all. For those who have responded, you sound as if you handled the pain / surgery / recovery very well... and that gives me hope. Thank you for that.

A few of you have said to get PET scan results before I make any decision... If the tumor they want to remove does not light up, what would you recommend? After speaking with the surgeon, it sounds like he will still want to do the lobectomy regardless of what the PET scan shows. If the PET scan shows other areas that light up then I was told that will change the course.

Again... Many thanks. For those of you facing ongoing or new issues, please know that someone out here (me) does care about you, too! Love to all.

[LexieCat]

I know my surgeon wanted to remove the nodule/lobe regardless of whether it lit up.  With small tumors, they don't always light up. 

The main reason for the PET scan is to be sure there hasn't been any spread to lymph nodes or elsewhere in the body.  It isn't foolproof, but if there are signs of spread chemo is often recommended first before considering surgery/radiation.

FWIW, my surgeon's plan was to remove the nodule from the lobe first and rush it down to the lab to examine the cells during surgery.  If it was clear, that would have been that.  If the exam DID show cancer, then the entire lobe would be removed along with the lymph nodes closest to the tumor, so those could be examined afterward.  That determines the "pathologic stage"--which might be different from the "clinical" stage--what they believe without looking at the lymph nodes.  All my lymph nodes were clear, so I remained at Stage I, though it became "Ib" because of the possible pleural invasion.  

The pathologist will also determine the exact type of cancer--in my case, adenocarcinoma (or what my surgeon referred to as "garden variety" lung cancer--the most common type). There's other info they find out during the pathology exam, too, that might be relevant to treatment/prognosis.

Teri

[LexieCat]

Incidentally, if you were wondering (as I did) why not remove JUST the tumor instead of the whole lobe, my surgeon explained that removing the entire lobe is the BEST way to eliminate all the pathways (blood and lymph vessels) that stray cancer cells could use to escape to other parts of the body.  Makes total sense when you think about it.  

I was totally AMAZED at how they could remove an entire lobe through those tiny incisions (the lung gets smaller when not full of air--kind of like a deflated balloon), but as long as you have decent lung function, removing the lobe most likely won't affect your breathing at all--there is more than enough lung tissue to take over for the missing lobe.

[ColleenRae]

LexieCat,

Thank you for the great, detailed (& understandable!) posts.  Very clear and helpful!

I was told the same re: removal of the entire lobe vs just the tumor... and due to the location where it is wedged (making it difficult to do a "simple" removal/cut).  Surgeon basically said removing the entire lobe was a better preventative measure in the long run.

Thank you, again, for your informative and helpful posts.  Knowledge is power and more comforting for me, personally. The more I know, the better I can handle this.

Surgeon is hoping to do VATS if he can... I watched the video and saw one he made as well - it is indeed amazing what they can do!  I had my gall bladder removed minimally and it was really a piece of cake... I know this surgery will be much different, but hoping they can do it this way.

I was also told Dr. would do mediastenoscopy (sp?) at the beginning of the lobectomy surgery to check for lymph node involvement... I was under the impression he'd be able to get node results immediately and that would influence whether or not the lobectomy would proceed... I may not have understood that.  I'm just anxious to get the PET Scan done. It was ordered July 18th but I was told I can't have it done until Sept. 13th. Just seems like a long time to wait for a scan.  My guess is that if the PET Scan is okay, then surgery will be a go and planned shortly after that.  I already had lung function tests which were good ("near normal"... whatever normal is...ha!)

Many thanks.

[LexieCat]

Yup, my surgery was actually scheduled before I'd had the PET scan--that way the OR/surgeon's time was reserved and he had the info before we actually did the surgery.  I've had a number of surgeries, including an appendectomy, a c-section, a tubal ligation, and a tummy tuck--the only one easier than the lobectomy was the tubal ligation.  The "big" abdominal surgeries were MUCH more painful and required longer recovery.  

With my VATS lobectomy, I had a sore throat for a day or two due to the breathing tube, and some abdominal pain from coughing (you are encouraged to cough--a lot--after surgery to improve your breathing).  They will also give you breathing exercises to do (breathing in, with an inspirometer, and out using something called an "acapella").  Doing the exercises helps a LOT.  I started taking mile-plus walks within a week or so of getting out of the hospital.  Other tips: get a wedge pillow--you will be more comfortable sleeping elevated for the first couple of weeks.  And a soft exercise bra can be much more comfy.  I actually went without a bra for a few weeks, wearing a vest if I had to go out.  But for exercising, I wore an exercise bra, and that was fine.  

[BridgetO]

Hi Colleen and welcome,

My situation was not too different from yours. I had a suspcious nodule that was "watch and wait" for a while and then when it coninued to grow slowly it was recommended I have it out. Because of its location, it couldn't be biopsied without removing it completely and also the whole lower right lobe needed to be removed. The surgeon explained that because of where it was located in relation to blood vessels, the blood supply to the lower part of the lobe would be too impaired if just the nodule was taken out, and tissue would die without blood supply. I had a PET scan in which nothing lit up--not uncommon with small slow growing cancers. 

I had the nodule and a bunch of mediastial (center of the chest) lymph nodes taken out by VATS in November 2016. As expected, it was adenocarcinoma Stage 1A. I was discharged from the hospital the day after the surgery with a chest drain tube in place. The tube was a nuisance and  painful if I moved wrong, but I quickly figured out how to move and within a couple of days I was walking around the neighborhood wearing a big raincoat to cover the tube and drain bag. I was fairly capable of taking care of myyself quickly (fortunately I do have a helpful spouse), but I couldn't drive until the tube was out 10 days later. I did need help changing the dressings, especially the one around the drain tube. 

I now have no pain at all and my lung capacity is fine. My quality of life is really good. (I'm 73).  i have a little noise with breathing at times, which is probably due to a really nasty case of bronchitis I had about 6 weeks after the surgery.

I have had two cancers prior to the lung cancer and for one of them I had a really major surgery. The VATs lobectomy was NOTHING like that-- as LexiCat says, a piece of cake by comparison. 

I understand your concern about needing care and not wanting to rely entirely on your son . Sounds like he wants to help and it could be good for both of you to accept this. It would also be good for you to arrange some backup. Think about who you know who might be able to help with things like grocery shopping. Also, are there grocery stores that deliver? I'm a retired case manager so I know a lot about finding resources, but most people don't. I suggest you ask for a referral (now, well before your surgery) to a hospital social worker who could help you figure out some of the practicalities.

Hang in there Colleen! You can do this.

Bridget O

[Roz]

Hi ColleenRae,

I had VATS (9/17) and thoracotomy (10/17)- stage IV NSLC..Prior to that I was healthy, worked out regularly, ate healthy, etc...the docs did not have a clue as to why I ended up with lung cancer (two huge masses in two separate lobes on both sides)...So, I think the most important thing is to take it one day at a time. Sometimes there is no absolute right decision and you find you make the most informed choice that you can make. There's no way to know how your body will respond to a thoracotomy, but the VATS surgery is definitely an easier recovery. I turned 61 in 9/2017, so I really do understand your fear and apprehension. Support of friends and family helped me tremendously. Happy to answer any questions that you have. 

Ro

[Cannedy]

My two cents about household stuff after (I also live alone but have not had surgery yet) to call meals on wheels, American Cancer society for support and resources, church groups, Walmart and other food delivery instacart etc, schwans. The ACS has a program where volunteers can drive you to follow up appts etc. I have been working on getting definitive diagnosis (if you read my other posts) and first I thought I'll just let nature take its course but now I feel like a tiger and am ready to do absolutely anything and everything to fight to heal. Our feelings may change but whatever you decide will be right for YOU. Hugs 

 

[ColleenRae]

Thank you Cannedy. I will try to read your posts later today... appreciate your "two bits"!

[ColleenRae]

My apologies as I don't have enough time to reply to all of you who have been offering your advice, experiences, encouragement, etc. - I wish I did!  I am very grateful to each of you for taking the time to do so. It is very helpful! I have already gained a higher degree of confidence in facing this - compared to how I initially felt when I made my first post.  I honestly only saw the dismal, tragic side to all of this and was certain a lobectomy was not the answer for me... But all of your stories / experiences have sincerely helped me to look at this in a more rational and positive manner. Thank you for that. 

Bridget0... I'll bet you were an amazing case manager! Thank you for your uplifting story and information. Great, practical information / tips that I was looking for and will follow up on (i.e. grocery delivery service). Yes, I asked for a hospital social worker - I'm sure they are swamped. Clinic put in a request in mid-July and I called 2x since then when I did not hear from anyone. I did receive a call last Friday - I have a 30 minute phone appt. scheduled for tomorrow with the clinic social worker, so hoping that will help. I also have a great support from my PCP's clinic through their social worker - but she is limited in what she can do and she's been trying to make contact with the cancer clinic social worker. 

Off to see a local pulmonologist this a.m. to discuss what Seattle Cancer Care Alliance (SCCA) has advised (lobectomy through U of WA Medical Center).  I know he's part of a group practice here in Bellingham, and there are some thoracic surgeons here, but I have not been very impressed with the hospital in our area and feeling unsure as to the experience / qualifications of the surgeons here... I may look into a second opinion locally but it's fairly well known that both SCCA and UW Medicine are top notch providers.  It's not easy for me to travel there, but I am grateful that I live close enough to access their services.  My biggest worry (worries) revolve around getting back home after surgery/hospital discharge and if something goes wrong (i.e. lung collapse, infection)... I suppose I'd have to go to our local hospital in that case.

I'm rambling... I just really wanted to start my day here by thanking all of you once again.  I hope that one day I will be able to be a positive and informed source of support for someone else like you are now for me... I don't know any of you, but I am grateful to all who have posted here. Full of admiration for each of you. Wishing I could give each of you a hug and a smile to say thank you... it means a great deal to me.  I do not, unfortunately, have any family support.  I'm actually a fairly outgoing person and have always had friends in the past, but I moved a great distance a few years ago and am quite far from any friends I used to have - my time has really been involved in caring for my son and I neglected my own friendships, sadly... I was working outside of the home for a while, but it was a small family run business and I did not make any new associations in my new area.  I ended up leaving that job to resume working from home, so my social life / outside contacts are very limited.  So, this is strange for me to reach out here in cyber space for help from strangers.... But it really has been helpful!  So glad I found this site and all of you... Thank you.

[LexieCat]

Most complications, if they were to happen, would be in the first 2-3 days after surgery.  It might be possible to arrange to stay in the hospital for a day or two longer than you otherwise would, just to be sure you're in solid shape to go home.  I'm not sure how much travel time you are talking about, but if you could afford a cab, or if there's affordable medical transport, those are both possibilities for getting home.  I think, personally, it's worth it to have a very experienced surgical team and hospital, where they do these procedures all the time and are well-equipped to handle any issues that might come up during or immediately after surgery.  You can probably see someone locally for followup after the first post-surgical checkup.  That would mean maybe just one additional trip back, a week or so after your discharge.  Once you are seen by your surgeon for followup you are usually cleared to drive.

You'll figure this out.  I did accept the help of a cousin after my second discharge from the hospital, but if she hadn't offered I would have managed.  I had neighbors who could help me in the event I absolutely needed something.  But my circumstances are much like yours.  Not too many close friends nearby, work from home most of the time, so not a lot of people to call on.  I had a visiting nurse come out to check on me right after I got out of the hospital to change my dressing so I could shower.  That was arranged through the hospital.  Your son can help around the house (loading the dishwasher, bringing you something from the kitchen), and in just a couple of days you will be feeling pretty good and not need his help, other than any heavy lifting.

[Steff]

Colleen,

Knowing the drive between Seattle and Bellingham, I would definitely be looking for a way to get home that does not include driving yourself.  That's a pretty long, hectic drive depending on the time of day.  Although my mom had the more invasive surgery without VATS, I still don't know if she would have been comfortable driving home and she only lives 20 minutes away from the hospital.  I would bring up the transportation issue with the social worker when you speak to them.  They will give you some local ideas to possibly help.  If anything does go wrong after you get home (everything will probably be fine) you can just go to your local emergency room and they will make any referrals if they cannot handle the issue.

In regard to travelling for follow-up appointments, my mom met with her surgeon 1 more time to follow up after surgery (like a week or two later) and then all other appointments were with her pulmonologist or oncologist.  So even if you do have surgery outside of Bellingham, most follow up visits can be with your other docs.

[Tom Galli]

Colleen,

Greyhound has a bus from downtown Seattle to Bellingham that costs about $13.00 one way, if that helps. If you are well enough to ride in a car, you’ll be much more comfortable in bus. 

I thing you are right to choose first the best surgeon, then hope he or she practices at the best hospital. 

Stay the course. 

Tom

[BridgetO]

When I've had surgery, I've had pre-surgical instructions to arrange to have  responsible adult drive me home after discharge and the hospital has checked to be sure this is set before they released me. I seem to recall that they even said "no cabs", so I doubt they would go for a bus either. Maybe a cab  (or Lyft or Uber?) your son  or someone else is there to accompany you on the ride. I have the idea (read about it somewhere?) that some hospitals have arrangements with nearby hotels or other housing for short term help for patients after discharge, when they live at a distance. This might be worth asking the social worker about. 

Bridget O

[ColleenRae]

Just read something written by one of the members here, Tom Galli, and it really reasonated with me today... (Thank you, Tom!)

"Rather than dwell on the remaining balance, focus on doing something you enjoy everyday.  I suggest a survivor forget the past, declare the future irrelevant, and live in the day."

I've been trying to read through old posts looking for info that might answer questions I have or be similar to my journey with lung cancer... I saw so many great posts but I ran out of "likes" that I could post today  

I saw a local pulmonologist this past week and I have more questions (of course!) that I'd like to run by those of you who care to pipe in, but I'm not sure where to start posting. I don't think I'm supposed to keep dragging this one out as it is supposedly for "newbies" to introduce ourselves. 

Can I start a new topic under the NSCLC forum with a list of my questions?  Is that the proper next step to take for this site?

Again, many thanks to all of you who have responded with such useful, supportive information since I first posted here... I am more grateful than my words can express.

Colleen

 

[BridgetO]

Hi Colleen,

The NSCLC forum would be a fine place to post a list of questions. Fire away!

Bridget

 

[ColleenRae]

Thank you Bridget!  So grateful for you!