First post surgery follow up scan?

[alascerca]

Hello all,

i am long-winded, so for people preferring not to read more, here is my question without ado: what is the timeline for follow up scans post surgery for stage I adenocarcinoma? (Surgery was on October 19, 2021 and involved two wedge removals of left lung). I had thought it was 3 months post surgery but don't know. 

I enjoyed your friendliness and helpfulness when diagnosed and out of surgery, but have been inactive since then. I have been facing myriad challenges that are, each one, big, big issues, and it has been very difficult to keep depression (which I have had forever and generally manage very well) from breaking through the tenuous shell that wraps me at present. But that is another conversation. 

This is my third major cancer - all unrelated types. The other two were stage III. I don't even mention the squamous cell and melanoma skin cancers in situ that I have had removed as they seemed a walk in-and -out "nothing," but alas, I guess they are cancer, too (though we know the culpability lies less in body weakness in the sun and those 1960's -1970's baking in the sun, the-more-the-better days!).

Anyway. My case should given me every reason for promise; stage I adenocarcinoma, discovered early. I had three wedges taken from my laft lung last October 19th (2021), and am considered, for now a "surgical cure." This assessment was determined through getting good margins, lymph node biopsies and other limited tissue biopsies. 

I could have sworn that the surgeon that attended to me (I have no other doctor) said that I would have my initial follow-up CT three months post surgery. Then he said that he would call to make the scan appointment in March...but that makes this initial follow up 5 months post surgery. I do not trust this surgeon very much, he has not been very nice, so seek alternative input. 

I have tried to look at NCCN (National Cancer Clearinghouse Network)'s rubrics, which, many times, are very informational, but found nothing there. I've tried to find something on Google, but so far have not been successful. 

Your input...or guidance to links is appreciated! 

May you all have a good start to your week. Sending my greetings over cold forest skies.  Cheers, ~ joana dougherty

 

 

 

[LouT]

Welcome back.  Glad to hear that you had your treatment and it went well.  I was also diagnosed at Stage 1a and had a lower-right lobectomy.  My first scan was 3 months after the surgery and for the following two years it was every 6 months.  My last "6-month" scan was last August and now I'm on the annual schedule for scans, with my next on due in August 2022.  Sometimes doctors will do different schedules depending on the patient, type of cancer and treatment administered.  "Cure" is an odd word for a doctor to use right after surgery (my pulmonologist uses it as well), but all my scans have been deemed "Stable with no sign of remission or new growth" which I happily accept as NED (No Evidence of Disease).  Best of luck to you and please keep us updated on your scans and progress.

Lou

[Tom Galli]

Joana,

To your question: "what is the timeline for follow up scans post surgery for stage I adenocarcinoma?" After surgery, you should have been referred to a medical oncologist for regular followup. Timing of the first scan after surgery is a judgement call, but I believe 3 months is usually the norm. Lung cancer is so dangerous because it often recurs, even after a surgery with clean margins. I'd get a medical oncologist on your team as soon as you can.

Let's explore terms associated with results from lung cancer treatments. What do they mean? Here is information provided by a medical oncologist defining cure, remission, NED and the like. You'll note his comments about surgeons and their preference for cure pronouncements.

For all those reading this, I can't stress this point enough. Lung cancer is cancer, and treating cancer is the domain of the medical and radiation oncologists. Even if you are a Stage I patient, ensure you consult with a medical oncologist and perhaps a radiation oncologist before or shortly after surgery. We want to avoid the surprise recurrence or perhaps even more concerning, recurrence that progresses. This study is dated but it does characterized the frequency of recurrence of our disease. 

Stay the course.

Tom

[LouT]

Tom is so right about the oncologist.  I added one to my team and things were much better after his addition.

Lou

[LadyRoseBlade]

Hi Joanne.  I had a left upper lobectomy 9/1/21. Adenoma stage 1 and all nodes clear.   My first scan was three months post op and NED. now I’m on a four mile th schedule for 2 years.  Then yearly. I declined and oncologist post op since the surgery went well. If anything shows up on scans then I’ll go. I just could t handle it    I do wish I had been referred to a pulmonologist as I’m not breathing as I thought I’d be. So I e asked for a referral.  I find this page/group extremely helpful. 
blessings and positive thoughts to you. Stay in touch with your medical care providers.  
LadyRoseBlade / Susan 

[alascerca]

Dear Lou T, LadyRoseBlade, and Tom Galli,

Please bear with my delay in responding to your thoughtful responses that have been a great help. I need additional help. I am in a quagmire out of which I can't seem to see. Again, the problem is that I suspect that the surgeon assigned to me doesn't really put much stock into my worry and fear, and has scheduled my first post-surgery follow up scan five months past surgery. I also had thought that it was a three month protocol for initial follow up. My cancer was caught early, stage I, adenocarcinoma, (supposedly) "cured" through mid-October surgery.

You have emphasized to me that I need an oncologist. I COULD NOT AGREE MORE. When I have mentioned this to the surgeon he seems offended and says, "No! This is a surgical cure, you have no reason to see an oncologist!" I have asked, pointedly, three times. I am not sure what route to take in getting this request honored, and I am not sure of the justifications that I can use to counter the surgeon's huffy denial, and seeming offense taken at my suggestion beyond his scope. This, after all, is my third major cancer, the others being stage III, and permanently disabling me. (I am not including the squamous cell and melanoma skin cancers that I have also had, as they seem the scourge of those my age, having idolized the sun during the 60's and 70's).

Ironically, I am a professional in the cancer world, a counselor for children with cancer, for their families, and for adults with cancer, too. I facilitate a large support group, and talk cancer all day long (taking a small break at present); have done for over 20 years.  So I know what *I* suspect and feel here, and I know that I would like to feel that I have the regular, underlying support of an oncologist. It seems silly not to have one. But I am being cut off on asking.

I have been patently depressed. While I was fighting my cancer, my sister was also fighting hers and she died. Without the long story, my husband and I are living sheerly from the generosity of people donating to funding efforts; we have never before been economically unstable, but are wiped out now. It is a tenuous feeling of woe. I have hooked up with a therapist, but on the medical side, would like your input about the "justification" I might use to push to have an oncologist.

I am painfully aware of the insidious nature of lung cancer, and am beset with woe. In the wake of my sister's death, I am steeped in the cloud of fatality, and feel a daunting overriding message that reminds me at every turn, "You're not going to escape this one." I fully understand the psychological motivations behind my dark state, and counsel others through this strange post treatment/ post surgery time, but am not at all good at counseling myself!  Life has been extraordinarily difficult of late.

So, bottom line: what are some good "justifications" for seeing an oncologist when the surgeon insists that it is not necessary? I don't want to jeopardize my health for the ego of a man who cannot stand to be countered. Thanks. Your input was read with gusto, and I apologize for not having responded more readily. Everything in my world has been "off." Incidentally, I am a Kaiser patient. They have, in other areas been extremely responsive.

Wishing everybody well. You are a lovely group and I appreciate your CARE. Cheers, ❤️ Joana

[LouT]

I feel so sorry for what you are going through.  You can remind your surgeon that even when lung cancer it treated at Stage 1 it is still a high chance of recurrence and you want an Oncologist on your team now ahead of time.  In my case my Pulmonologist was not keen on an Oncologist so I called on myself, got him on the team and then he assumed my follow up role.  If the word "cure" was so final we would all be happy, but there are no guarantees with this disease (and many others).  If he won't work one in then you call one yourself, explain your situation and get him on the team.  I did that and my Oncologist changed my CT Scan schedule to one more aggressive than my Pulmonologist thought necessary.  Please let us know how this works out for you?

Lou

[Tom Galli]

Joana,

Book your own appointment with a medical oncologist in the Kaiser system. Involve Kaiser administrators if need be but get the consultation. You need follow-up screening after surgery because even resected stage I disease has a high probability of recurrence.

Could someone reading this with expertise in navigating Kaiser's system chime in an provide insight?

Stay the course.

Tom

[BridgetO]

I would suggest that if you're not able to get an appointment with an oncologist  without a referral, you could talk to your primary care doctor for a referral,

[ChiMama]

Hi Joana, so sorry you're going through this. A little input from my perspective:

I don't think you need any justification to have an oncologist, with recent dx and multiple previous cancers. It would seem to me to be standard of care, and foo on what the surgeon thinks! You need someone who knows cancer, knows treatments, and has a whole body perspective on you and your care.

As a Stage 1, my surgeon also pronounced me "cured." I had 2 follow ups with my surgeon afterwards, the last one being 3 months after surgery, and then they basically released me back into the wild and he is no longer involved in my care at all. So the oncologist is the one who takes over after the surgeon has done their job.

Lung cancer was my second cancer, so I already had an oncologist... But if I didn't already have an oncologist, after my LC surgery I would have gotten one. When I had my first cancer (colon) in 2016, also Stage 1, I got my oncologist on a recommendation from my surgeon. Then I got my pulmonologist on a recommendation from the oncologist, to watch over the little nodule in my lung (that eventually turned out to be cancer).

My pulmonologist and oncologist work together in my followup care and scheduling of scans. Because of my post-surgery lung capacity and coughing issues, a year and a half post-surgery, my pulmonologist is the main provider these days, while during my 5 year CC followup which ended last summer, the oncologist took the lead... but he gets copied on all my reports and he will reach out if he sees something that needs to be addressed, and I see him every 6 months now. (I LOVE my oncologist!)

My first CT scan was 3 months after LC surgery, now every 6 months.

With my insurance, any new doctor or specialist I go to requires a PCP referral, as Bridget mentioned above, so I just find the doctor I want, then message my PCP through the portal and make the request. Sometimes they want me to see them as a formality, which I mostly do via video visits now. They have never questioned the request or turned me down.

This is one of those times when being resolved, polite but firm, and persistent will not only get you the result & answer you want, but in taking back control of your health journey, I think you will feel better emotionally too. 💜

[alascerca]

Dearest Tom, Lou, BridgetO, and ChiMama,

Once again, I ask that you bear with my tardy response to your thoughtful comments, which make me feel so supported and SEEN, which is a crucial part of patient treatment that sometimes, the medical system fails at providing. I am battling depression (circumstantial depression; there are pressing issues, including economic devastation and literally surviving daily existence from the sheer kindness of "GoFundMe" donations: a horrible insecurity). I am feeling a profound sense of defeat, which of course, doesn't help with healing.

I am due for my first follow up (which I previously wrote), and have messaged and called the surgeon. No answer. It has been a week. I detest that man. That is lamentable, as it is wonderful -- and crucial-- to feel that your doctor cares. I will persist if I have to call a hundred times on Monday.

I wrote to my PCP, and this is what she wrote back:  "According to their [surgery's] recommendation medical oncology consultation is not needed at this time. " I am flummoxed and amazed. How could they be so STUPID!? I do have the phone number for an oncology nurse that I was given before my surgery, and will call her, to see if I can approach things in this way. To have to fight and be the "problem patient" for mere basic service is galling and frankly, frightening.

In general, I have had very good general responses from Kaiser, but in this area it has been an enormous FAIL!  I will persist and report back. 

Due to two stage three previous stage III major pelvic cancers that left me disabled and with severe pelvic radiation disease, doctors have talked about colostomy surgery for years, and I think that I am approaching that reality. I have already had major surgery to re-pin detached intestines from tissue disintegration, but I think that we may be beyond that now. Sigh.

I am dealing with quickly worsening pain (typical of pelvic radiation disease) that until now, I have managed naturally, and successfully, but it is beginning to become too challenging, and I am frequently beset with such pain that walking is difficult. It is a trial, and I am thinking that a pain management clinic might offer some other modalities for addressing the woe. As I work with cancer patients, I am aware that each pain management program is different from the next, and some (in my personal opinion) are worthless. Others, however, are wonderful, including myriad approaches to physical torment.

And YOU UNDERSTAND: I just want to feel that there is a cancer professional under whose wing I might feel more supported and considered. At present, I feel neglected and as though my dropping dead would be little more than a paperwork inconvenience. 

I am not needing more advice, yours is so well-taken and I will push on, sensing your backup to my (what I consider) legitimate wants. I just want to touch bases and let you know what's going on with me, as well as to extend my boundless thank yous for your thoughtful solidarity and attention to me; it is an elixir to my hurting soul.

I am frightened and down. Alas.|

And...for the finale to my woeful letter, I include a comedic poem that I wrote about the stupid surgeon, which is not required reading (I know that some are not fond of reading poetry but just had to include it, as I think some might enjoy it!):

With very warm greetings, and deep appreciation from a cold forest, ~ joana

Implacable Cornball

This morn, word-torn, I rose to see
That for my dark, sad poetry,
People could think me a real drag,
A soppy, whinging, self-sorry hag!

How to convince this revered crew
That I laugh a lot: I swear it’s true!
Though my life is stained with pain--
Physical, emotional; it’s my domain,

If there is no hearty laugh,
Bejeweling the day on my behalf,
What’s it all for, this pain and woe?
Without hilarity, life’s a “hell no.”

Nope, to cope, giggle I must;
My day is play; it’s giggle or bust!
Puerile, corny, odd, absurd;
To be silly I’m always spurred!

In the sterile confines of the doctor’s quarter,
A joke rises in my brain-- a real snorter,
I sometimes forget that my hilarity
Is not met with entertained charity,

And that *look,* the one I know so well,
Shows me he’s not amused, I can tell.
“This one’s a real weirdo,” he surely thinks.
Well, I think his poker-faced way just stinks!

Around his white figure, I envision a dance,
Like “Elaine” in “Seinfeld, and he looks askance
“What to do with a patient unstrung?
You know, that weird one, with the cancerous lung?”

Flailing in rhythm only known to me,
I surround him, in writhing, twitching glee
Limbs akimbo, a crazy bimbo,
Clumsy jerking (perhaps some twerking!?)

Tongue hanging out and flipping,
And even more creepy weirdo-dipping.
He begins to display expressions of fear
Is the end of HIS life near!?

I chant my secret song; what could go wrong?
I just knew that we’d get along!
“Mlaammma, plammma, boodle phat!”
Glubbok, pingpook, zhreetz!” Take that!

He’s so uptight he’d certainly shatter
If I gave life to this comedy matter.
A pleasing thought, though, I must admit,
That he’d deal with more than a hematocrit.

Oh, indeed, my soul is dyed in “weird,”
I’m hopelessly, impossibly cornball-geared.
So, should you feel me to be quite dark,
Right under the surface, there’s that spark!

❤️

 

 

[Judy M2]

Joanna, your poetry is awesome. I certainly don't have that talent. It's great you have the creativity to express yourself in the face of your challenges. 

I wanted to give you my experience with colostomy surgery. Two years ago, just one month after completing chemo and radiation, I developed a perforated bowel and a sepsis infection. My surgeon performed an emergency colostomy. I was in the hospital for 10 days (several days in the ICU) and 10 days in a rehab facility. The surgery was painful, and recovery took a few months, but it saved my life. I don't tell many people that I have an ostomy but it is what it is. I did inquire about reversal and decided against having additional surgery. For me it's an inconvenience and somewhat restricting but that's me.  Not everyone feels that way. I do follow the United Ostomy Associations of America (UOAA) and you might want to check them out. I'd think that having the surgery on an elective rather than emergency basis would be easier to tolerate. 

I'm not really familiar with Kaiser. If they offer palliative care (it's more than pain management), you may want to consider it. 

Surgeons have a reputation for being cold. Perhaps you can ask your primary doctor to intervene and schedule your follow-up with the surgeon. Otherwise, you're on the right track about calling and pushing for a medical oncologist. 

[alascerca]

Hey there Judy,

Thanks so very much for your kind words and your supportive information -- as well as your personal share. As somebody who currently facilitates an anal cancer support group, I am robustly familiar with ostomies (when I was diagnosed they told me that I would exit surgery with *both* a colostomy and a urostomy. I saw stoma specialists and the whole preparation thing. It wasn't necessary at that time, thankfully, and now is a question of quality of life, which with time, diminishes.  One thing that has been SUPER helpful to me is to have joined an ostomy support group on Facebook ("The Real Ostomy Support Group") and it has been a true vista onto the daily life of ostomates, both good and bad broached. I cannot say how much that has helped me in psychologically trying to adjust to this eventuality. Dismally unfortunately, I suffer enormous shame issues, and some of the fallout of colostomy life makes me scared that I would live in perpetual shame (yes, I know that this is rotten for a counselor and educator, but I admit this inadequacy out front, and know, well, the inappropriateness and sad life-limiting reality of suffering such deeply ingrained shame issues. I LOVE my ostomate team there, and yearn to simply accept normal, regular old "life stuff" as most less wounded people do. I know that the adjustment for that first year post surgery is a bear both physically and emotionally, and I, saddled with my self-deprecation and crippling shame, fear all of it. Alas. I salute you!

I will persist in getting the attention I need, and I appreciate your helpful, and heartfelt comments.  I am frightened and down, down, down. I have even taken a break from my group -- which in over two decades, I have never done (save when in treatment).

Thanks -- being SEEN and validated is huge. Gigantic. I appreciate it more than you'd know.
Sending love along from this very cold afternoon forest. ❤️ joana

[Judy M2]

Joana, I've never heard of the FB group before and will look into it. Thanks. 

I really understand how you feel. It's hard to have an invisible disability (which it is) and no longer be normal. I admire the young ostomates who do informational YouTube presentations. For them, they had lived a life of pain and anxiety before their procedure, and they've been freed from all that. 

I'm going to send you a private message so we can discuss this privately if you like. It will show up as an email where you see notifications on this site.