Rib/Side pain is back 2 years post op.

[Feelingblessed2013]

My last LC surgery they found some cancer cells in the pleura, but nothing was said to me. That was 2 years ago. My last CT scan of my lungs looked good, blood work looked good. I mentioned my side getting sore again where the chest tube was, (it took way to long for that incision to heal to begin with) and that my shoulder has been bothering me, the drs assistant said everything looked good so not to worry about it. That was about a month ago. I have noticed the past few weeks my breathing is getting worse, I am coughing a bit more, a bit more congestion. I figured it was a combo of the emphysema and the heat and humidity we have been having. But today my side is so sore I had to take my bra off. Luckily I'm not going anywhere today. I worry because the cancer invading the pleura, to me means it had started to travel.

They are only checking what's left of my lungs, and the blood tests. What about the rest of me?

Should I relax and not worry about it because scan and blood work were good, or should I see another doctor?

[Denzie Moderator Volunteer]

Yes! Get a second opinion. One of these NCCN affiliates would be a good choice.

nccn.org/members/network.aspx

[Feelingblessed2013 in reply to Denzie]

Thank you for replying. The only NCCN affiliate in my state is Roswell, I already go there, that's where my oncologist is. That's where I go for my scans. I think I am going to call them tomorrow.

[judg69]

Hi Katherine, by all means get a 2nd opinion. Other options are university settings , ie Univ of New Mexico or a Mayo or Cleveland Clinic campus in Phoenix area, even if necessitates a tele-appointment via internet, judg69

[Feelingblessed2013 in reply to judg69]

Thanks for your response. I never considered a tele health appointment. That may be something to consider

[Gingerapple]

Good morning KatherineK,

I would certainly get another opinion and even after that another one if any were not positive! Definitely make an appointment today! Thinking of you, bless you, Bev🤗🌹❤🙏🏽

[Feelingblessed2013 in reply to Gingerapple]

Thank you. I am going to reach out to my oncologist first, and then go from there.

[Denzie Moderator Volunteer in reply to Feelingblessed2013]

Good plan. Is Boston too far for a 2nd opinion.

[Feelingblessed2013 in reply to Denzie]

Sorry, I just realized you were asking a question? Yes, Boston is too far of a drive for me. I live in Western New York State.

[JanetteR57]

The symptoms you describe could also be something else like an infection, muscle strain so worth getting checked out....as not every symptom we have after our diagnosis/treatment is related to the cancer. I've had a number of scares over the years where even the clinicians suspected recurrence but thankfully none of them were - but still serious enough to have me hospitalised to get proper treatment. hope you get some answers soon.

[Feelingblessed2013 in reply to JanetteR57]

My PCP was concerned that I could have an infection after surgery when that one incision took months to heal. But it finally healed and the soreness subsided. When my side started to be bothersome again, it was passed off as probably a pulled muscle. This time I won't stop till I get some answers.

[Cindy121]

Your CT would have shown your pleura. I agree with Janette that, although it’s most natural for our thoughts to go to recurrence or metastasis, there are many other things that could be causing your symptoms. You might consider a coronavirus test because you are at high risk for getting seriously ill from that due to your emphysema and the shortness of breath and coughing can be symptoms. Severe coughing can also pull muscles, cartilage or even crack ribs, all of which hurt. I’ve fractured ribs in the same area I got my chest tube, so I know the area is also a constant source of concern. You’ve been advised to go to an NCCN affiliate, which you already do. I don’t think the travel to a different one is either worth the travel risk(expense or inconvenience). That’s just my personal opinion. Maybe you should see your PCP for their expertise and referral to appropriate service or specialty or see your pulmonologist. First, however, I would discuss your concerns further with someone on your own team at Roswell. The second set of eyes on the CT scan and a physical exam can be done where you are. I admit to my bias that I am doing fine and I never went to an NCCN affiliate or got a second opinion, so please take my response as personal musings with that in mind. You need to seek whatever level of care that will get you definitive answers to your concerns. Best wishes to you.

[Feelingblessed2013 in reply to Cindy121]

My concern is that apparently I should have has chemo after my second LC surgery when they found cancer cells in the pleura. I did not have any treatment, I was told I was stage 1a, no further treatment needed. I was never told about the pleura. I found that out when I finally got a copy of my surgical report almost a year later. Thats when I decided to go back to roswell for my care. I didn't feel I could rely on the oncologist I was going to.

Now the ribs on that side are tender to the touch, and tend to get sore after my bra lays across that side for a few hours, and my shoulder and shoulder blade on that side has become an issue. It is most likely nothing serious, but I want to be sure it's nothing serious.

I am also growing increasingly concerned that I will develop cancer somewhere else but it will go undetected until I am stage 4. My current care team is only watching what's left of my lungs.

And this is probably going to sound weird, but I can't shake this nagging feeling that something is not right.

[Cindy121 in reply to Feelingblessed2013]

That “nagging feeling that something is not right” is trying to tell you more than the rib/side/shoulder pain. You know your body and I pay attention to those nagging feelings. What did Roswell say to your question about the pleura when you got your post surgical report a YEAR LATER!?!? When was your last CT? When I showed remission and stopped treatments, I had the whole staging process done about 6 months later; a brain MRI and full body PET scan mainly. That was just to make sure nothing else was visible anywhere else when my lung cancer was still no longer visible after 6-7 months off treatment. PET scans are expensive, and most places need To justify ordering it to your insurance company, but if you had some evidence of some rogue cancer cells outside the area of your surgery, I think you need the reassurance that those are gone, but not to some other part of your body.

[Feelingblessed2013 in reply to Cindy121]

I had changed my oncologist back to roswell from a local place after I read the surgical report. My roswell oncologist said I should have had chemo, but at that point it had been a year, it was too late. My last scan was in June, but they are only checking what's left of my lungs. She did order an MRI of my brain just because I have been having bouts of light headedness. Brain is still there, but it looks like that's all that's there.🙂

On one hand, they did find some cancer cells in the pleura, but on the other hand all the lymph nodes tested were negative.

You are right, I think I need reassurance that the cancer hasn't decided to move and attack somewhere besides my lungs. I've had 2 "original" LC's in about 4 years.

[Cindy121 in reply to Feelingblessed2013]

So right! Your previous experience has to guide your decisions as much as your gut. If blood and lymph nodes are both fine, does that mean no cancer traveled anywhere via either of those systems? That seems like good news. My lung CT reports always comment on pleura. (Maybe because of your surgery, some areas aren’t scanned or show up in images?) and 2 different lung cancers, not 1 lung cancer and a recurrence? That’s tricky. I’d get a “conversation” about your concerns with the Roswell oncologist. If he didn’t recommend anything after your June scan results, make sure he’s heard your need for “reassurance” that there’s no remaining cancer anywhere. I’m sure he or she “gets it” that anyone who’s had any medical “mistakes” needs...requires thorough, Definitive answers.

[Feelingblessed2013 in reply to Cindy121]

They removed upper left lobe in July 2013, but everything was clear. I was told I was in "the 60 percentile". January 2017 a teeny tiny spot was found on my upper right lobe. It slowly grew larger until April 2018 when it was removed. My thoracic surgeon said that because it had been over 2 years, it was a "new original, not the old cancer metastasized". So yes, 2 different lung cancers but both squamous cell.

[Feelingblessed2013 in reply to Cindy121]

I did finally get access to the radiologists report, it did say that the pleura was clear, so that makes me feel a bit better. But I still want to know why my side is suddenly so sore and tender to the touch.

[Cindy121 in reply to Feelingblessed2013]

Yes, that’s a relief! The only other thing I can guess about your soreness is ribs and cartilage which can hurt like heck for a long time from even minor bumps or bruising. I’m glad your pleura is clear, but I’m sorry that getting an answer to soreness might be difficult. Cindy

[JRuthI1946 in reply to Feelingblessed2013]

KatherineK,

I have read your concerns and many of the responses. They all have reasonable statements.

Myself: I am now 6 years post left upper lobectomy. I would say that my ribs and wearing a bra were not at all pleasant for at LEAST 3 years.. I had stage 3A Adenoma and as is normal, every ache we have revolves around our cancer diagnosis. That is simply true. I think for your own sanity it is important to be confident that your Drs are listening to you and will take the time to reassure you that all is well. When I went back to my radiation oncologist I used to say to him...fine tell me what you think...and then I am coming into your office to look at the films with you. I would ask him to explain every little shadow...and he did.

I needed that reassurance and confidence that it was about me. And he gave me what I needed.

Every scan I had I asked the x ray dept to send me a copy of the results as well as my Primary care Physician and my Pulmonologist.

I hope you find a way to make peace with your body and let go of what we cannot control.

Good Luck. God bless..... Jane

[Feelingblessed2013 in reply to JRuthI1946]

I think that's my biggest issue right now. I left Roswell and started going to a local cancer center when I was at the "yearly scan" stage and foolishly though it would not come back. But I went back to Roswell after my second LC surgery when I discovered the pleura involvement that I wasn't told about, and learned that my oncologist's specialty was blood cancers, not lung. At least at that point, I understood why he was always going to someone else in the office for their opinion.

I saw my original oncologist, who said that I should have had chemo, but it was too late now. Then she said "life is short, eat the ice cream" ( she had overheard hubby and I discussing whether or not to stop on the way home to buy me some ice cream, and I had said I didn't want any because I am trying to lose weight). She said we would do a recheck in a year, but "in the meantime, any new symptoms don't hesitate to call". But no one has ever bothered to tell me what to watch out for. My last appointment I saw an assistant, I forgot that you only see your actual doctor at your first appointment, and if a scan shows anything to be concerned about. At least my old oncologist scanned my entire torso, not just my lungs.

As for my side, I had finally gotten to a point where I could wear a bra for more than a few hours, and I wasn't in pain, but it seems to be back.

[Gingerapple]

There may be some costochondritis?🤔

[Feelingblessed2013 in reply to Gingerapple]

I had to google that, never hear of it. But it makes sense, it still hurts to take a deep breath.

[Ncpoet]

Looks like my reply didn’t show up from yesterday. I think a second opinion is needed since your symptoms are causing you pain. Keep us posted on what you find out. Praying you get relief soon.

Judy

[Feelingblessed2013 in reply to Ncpoet]

Thank you Judy. I am definitely not going to just let this slide. It is most likely nothing, but I dont want to assume it's nothing and then find out later its something.

[Ncpoet in reply to Feelingblessed2013]

Glad to hear. Let us know what you find out.

Judy

[Feelingblessed2013 in reply to Ncpoet]

I will

[judg69]

Hi again Katherine, for what it’s worth, after my thoracic surgical lobectomy I had two types of moderate, occasionally sharp, rib pain for a couple years, 1) at the long incision site, and 2) on the opposite side ribs . It did get better, but still is somewhat noticeable with certain movements (I also did break three ribs 6-8 months after the surgery via a violent sneeze). It’s now 8 years after my IIIA/IIIB diagnosis and approximate 10% chance of surviving five years. (I think you know I also had maximum lung radiation and 2 years heavy chemo). Again for what it’s worth , my oncologist ( he interned at the renown Moffit CancerCenter) insists on a CT scan every 12 months regardless. Three years ago some potential new ‘growths’ were detected, so he did another CT in 3 months, no change , another CT in 6 months, no change, and then back to the CT scan every 12 months. All I can tell you , is Definitelygeta second opinion,

[judg69]

Sorry, I hit the reply button too soon. Katherine, please get the 2nd opinion. Please get it with a wholly different oncology group than your current Doctor and consider an appointment or Telehealth appointment with Mayo or Cleveland Clinic. At the present time, due to COVID-19, Medicare is reimbursing Drs for telehealth appointments at the same rate as an in-office appointment. Again, all best wishes to you, judg69

[Feelingblessed2013 in reply to judg69]

Thank you for your input. I am going to start with my PCP (I think), then I will go to a different oncologist for another opinion.

[June2081]

Have you seen another doctor? I’m curious what course of action you were told to take.

[Feelingblessed2013 in reply to June2081]

I haven't seen anyone since I saw my oncologists assistant. I have a message in to her, waiting for a reply. I also plan to see my primary care doc, and maybe my ortho.

[June2081]

Please tell me you saw a doctor by now?

[Feelingblessed2013 in reply to June2081]

I wish. No response at all from my oncologists office, and my primary is out of the office until end of the week. I am seeing my neurosurgeon next week for my head, neck, shoulders, hands, and feet not working like they should be.

I will be seeing my primary hopefully by Friday or Monday.

How have you been?

[June2081]

I am doing great! Well I don’t really know what’s happening on the inside u til the next scan but I feel ok and I’m living life. I will admit I do a lot of praying, my faith is strong, I will be praying for you to get some answers!

[Feelingblessed2013 in reply to June2081]

Finally got an answer from my oncologist's office:

"I do not think these symptoms are related to your history of cancer, they sound like things that can be discussed with your primary care provider.

Your questions:

-Our scans go from your collarbones to your upper abdomen so we still see many other relevant areas outside of the lung including your bones, liver, adrenal glands

-Dr. estimates your chance of getting lung cancer again at around 30-40 percent, she still feels comfortable doing scans annually

-I'd say symptoms to look out for are significant worsening of your breathing, new pains that don't go away.

I can imagine the anxiety and uncertainty with being diagnosed with cancer multiple times but our practices here are evidence based and I would trust your Dr's recommendations."

I will talk to my primary.

[June2081 in reply to Feelingblessed2013]

Wow well then discuss with your primary. I hope you have a good relationship bc the oncologists office sounds pretty cut and dry. I wouldn’t like 30-40% odds so much. One day at a time, you will be in my prayers

❤️

[Feelingblessed2013 in reply to June2081]

I'll take all the prayers I can get, thank you. Thing is, I left a warm caring cancer doctor and went back to an accredited cancer center. Beginning to regret that decision. It's a good facility, and my doc is a lung cancer specialist, known for her breakthrough research. But you only see her on your first visit or if there is a problem, other than that you see "a member of her team".

As far as the odds go, 30 to 40 % chance of recurrence means 60 to 70 % chance of staying cancer free. Those odds really aren't that bad, but those are the same odds I was given the first time. The second LC was first seen 3 &1/2 years after the first surgery, and that lobe was removed 14 months after that, making it 4 years and 9 months from first surgery to second.

I think I have a decent relationship with my PC. Anyway, I will see him and see what he says. I have to see him anyway about my SI joints.

If all this crap has taught me anything, it's to take things one day at a time, and to be happy, after all, I'm still here, still above ground.

Take care of yourself. Keep in touch. Please let me know how your next scan goes.

[June2081 in reply to Feelingblessed2013]

I’m happy to hear you got the all clear, this cancer is a constant whirlwind and we MUST be our own advocate, ask questions, even challenge the doctors. I’ve been at this LC roulette wheel a long time. My best advice is if your body is telling you something LISTEN! A body knows and keep asking until you get relief. Prayers will continue for you Katherine.

Liz

[Feelingblessed2013 in reply to June2081]

If you dont mind my asking, how long have you been dealing with this? It's been 7 years for me. When is your next scan? Please let me know what they say.

I will keep you in my prayers.

[June2081 in reply to Feelingblessed2013]

You wrote As far as the odds go, 30 to 40 % chance of recurrence means 60 to 70 % chance of staying cancer free“ I’ve never heard that before I’m curious how that translates?

My original diagnosis was June 2012, it was a cut and dry resection, clear markers, lymph nodes not even meeting criteria to see an oncologist. In August of 2014 it came back, same lobe, same cancer, we decided on removing the upper left lobe, chemo followed for 4 rounds of cisplatin and alimpta. Clean scan, until June of 2016, what was a stage 0 was now a stage IV, inoperable, incurable, and lifetime treatment, I have gone thru every chemo there is and am now on a clinical trial. Stage IV because it is in the pleura, and so I pray for you, I pray for me, I pray for all of us fighting for our lives.

Keep in touch, stay well Katherine

💜Liz

[Feelingblessed2013 in reply to June2081]

My first LC surgery was June 2013, they removed the entire left lobe. Told me I was stage 2 because there were 2 tumors. The thoracic surgeon said " young lady (he called me young 😁), you had a very aggressive very fast moving cancer, but we got it all, your fine", and then he walked out of my room.

He did send me for a second opinion, and that doctor told me I was "in the 60 percentile". There was a 60% chance the cancer would not return. So basically the odds were 60/40 in my favor, 60% chance of no recurrence of the LC , 40% chance of recurrence. I stayed cancer free for 3 1/2 years.

The second time I was told I was stage 1a because the tumor was only 11 mm. No one ever mentioned that the pleura was involved. But my last scan this past June said pleura was clear. Per my oncologist this time 30 to 40 % recurrence, means 60 to 70 % chance of it not returning. (60 +40=100).

Keep fighting. Keep in touch.

[tzfarr]

I would demand a PET scan!!!

[Feelingblessed2013 in reply to tzfarr]

Unfortunately my oncologist does not see a need for further testing. I will see my primary, and go from there.

[joe_s17050]

i agree with these orthers..by all means get a second opinion..God bless you..

[Feelingblessed2013 in reply to joe_s17050]

I am going to see my primary care doc as soon as he is back in the office. He has always explained things, and shown me my scans. Then I will go from there.

[joe_s17050]

sounds like a plan..I`m glad you have a Dr. you can trust..

[Feelingblessed2013 in reply to joe_s17050]

So am I