3d recurrence decision tree (Recap of Lost Posts, Topic Created by oldbeauty on Jan 05, 2019)
This recap includes posts that were lost during CSN's data outage from 10/29/18 to 1/30/19.
oldbeauty
Jan 05, 2019 - 1:41 pm
My living well/survivorship doctor, who is a medical oncologist specializing in BC, sent me for a pelvis/abdomen/chest/neck CT to investigate a cause for apparently worsening anemia that showed up in mid-December blood work, after having been on iron/vitamin C supplements for 3 months. A re-do of the blood work showed the troubling tests were largely within the standard ranges except for RBC that remains low. Thus, the prospect of bone marrow disease would appear to be eliminated although I will insist that the blood work be repeated again when I get my next port flush in February.
At original Dx, in 2005, I was Stage IC, Grade 2 endometrioid adenocarcinoma. I’ve recurred twice; this would be my third recurrence. I’ve had surgery, radiation twice, progesterone therapy and chemotherapy.
The CT showed a “new 5 mm subpleural nodule in the left lower lobe” of the lung. A 3 mm subpleural nodule that is unchanged from a January 2015 baseline PET/CT is unchanged and therefore benign. Other very small nodules detected in a November 2016 CT resolved after chemo and remained absent in March 2018 and still absent in December 2018. The radiologist states that the 5 mm nodule seen now was present on the 11/2016 CT “subsequently resolved and has since recurred and is concerning for metastatic disease.” Thankfully, there is absolutely nothing else of concern (no organs, lymph nodes, bones, fluid involvement).
I haven’t seen my (new) gyn oncologist yet nor spoken to her as she has been away for the holiday. My other doctor urged me not to panic. I’m disappointed, of course, but I am resolute (today) in my determination not to rush into treatment without first doing complete due diligence. Hence my quandary. Throughout my adult life, I have been told I “think too much” by professors, psychologists, physicians and husband (funny every supervisor I ever had seemed to cherish me for my analytical skills and thinking “too much”).
At my second recurrence, in 2016, several small nodules were seen on both lungs. Although I asked about biopsy, surgery, radiation, my (former) gyn oncologist told me they were too small and too scattered for those alternatives and that given my history (scattered lung lesions seen in 2012 at my first recurrence), he presumed them to be malignant nodules and if I intended to treat the cancer, I was best advised to begin chemo immediately rather than wait 3 months for a re-scan. I followed that advice. I achieved NED status in September 2017 and remained so now for 15 months.
So, I have a lot of questions (because I “think too much”). But I don’t want to come off presenting as a patient who thinks she knows more than the specialists because I know I don’t know more. Dr. Google tells me that chemo most likely does not affect benign nodules (except when it does). And it’s true I’ve had lung nodules resolve after starting on high-dose progesterone. So, it would seem that two different anti-UC drugs caused lung nodules to resolve, which would indicate that the nodules were, in fact, malignant and not benign (although there is that pesky logical fallacy “after this therefore because of this” to consider). But I concede the likelihood that this new 5 mm nodule is malignant, especially since it seems it is in the same place as its predecessor from 2016.
So, now that there is just one small nodule, I am back again on the decision-tree treadmill. I would dearly like to capture tissue for a definitive diagnosis, and testing to see whether any chemo drugs would be effective and whether there are mutations present that might qualify me for immunotherapy. Tissue collected at my first dx in 2005 has been discarded. Tissue collected at the first recurrence in 2012, if still extant, is overseas.
So, do I wait and re-scan and risk growth, proliferation and spread into other organs or lymph nodes in the lungs? Do I ask for a second opinion on this CT from a specialist thoracic radiologist? The failure to comment beyond size and location is maddening (What about smooth or ragged margins? What about presence/absence of feeder tube blood vessel? What about evidence of layered calcification?) Do I ask for a surgical consult with a thoracic surgeon for removal now either by cutting it out or doing stereotactic or other radiology?
Again, I have not yet talked to my treating oncologist. Unless it is moved up, my next appointment is at the end of January. I turn 65 in February and I am mindful that, with Medicare, I can go anywhere for a second opinion. My living well/survivorship doctor, whom I see in a week, patiently listens to me vent my frustrations and then helps me to make decisions but we’ve not worked together yet in the face of a likely recurrence. What I am after is another remission using the best tactic to get there and the best quality of life throughout treatment and beyond.
So, while no one here can answer my dilemma by peering into her crystal ball, I wonder if any ladies, especially those who are, like me, in the recurrence sisterhood can help me formulate questions/requests in advance of my upcoming appointments. All feedback is welcome. Thank you and best wishes, Oldbeauty
Forherself
Jan 05, 2019 - 2:28 pm
Did they ever find out why you were peeing blood? Or the cause of the anemia. The good things are endometrioid cancer, even grade two, is less aggressive. A 5mm nodule is pretty small, and it sounds like it responded to hormone therapy before, am I right?
And medicare. I am on medicare, and you need to buy a medicare advantage plan. I just learned that there is another type of insurance called medicare supplemental insurance. I learned about it from my cousin who is a medical social worker. With medicare supplemental insurance you can go anywhere. With our advantage plan, which was bought out by another plan, I was told that I could no longer see my gynecological oncologist. We switched in January. It costs a little more, but there is no co pay for hospital visits. So it will cost me less in the long run. Just an aside if you didn't know.
oldbeauty
Jan 05, 2019 - 2:48 pm
No, the peeing blood is a mystery. Had a urological oncologist consult at the time and repeated follow ups. No problem found. It has always bugged me. The bladder is a closed system and if the cystoscopy found no wound or lesion, the only place frank red blood could come from is the kidneys or ureters, right? The only thing seen was a tiny renal cyst that the urologist said was nothing he would do anything about, given that I was a recurrent cancer patient. The anemia is still unknown. Of course, I did have 12 rounds of chemo in 2017, though I never got down to levels where I had to have an infusion of Neulasta or whatever. I am going to re-do the blood work in February. I stopped the progesterone with the second recurrence in advance of chemo. Another reason I'd like tissue now is to see whether my ER/PR receptor status is still positive. Years on progesterone therapy will fatigue your positive receptor status. As far as Medicare, I've done my due diligence; I do not want a private insurance plan. I can afford a good Medigap policy and good Part D and I can absorb whatever copays or deductibles come my way. Thanks for your interest and comments. Best wishes, Oldbeauty
Soup52
Jan 06, 2019 - 12:23 pm
I thought I’d chime in about peeing blood. My daughter who has had kidney disease has had microscopic blood in her urine since birth. When she was finally diagnosed with a kidney disease at age 7. Anyway I know you’ve seen a urologist but have you seen a neuphrologist ? I I know urologists often treat kidney disorders also , but thought the other specialist might have other insight. Just wondering.
MAbound
Jan 05, 2019 - 2:48 pm
Don't people who say things like that just get your goat? My son calls it "paralysis by analysis", but darn it, it's better to make well thought out decisions than to just blindly do what others tell you to do. I've also been called a professional worrier and accused of being negative, but I've also noticed how others depend on me to do the worrying for them. I research everything so that they can feel like they don't need to. It's good to know I'm not the only one like this out there. We "proactive thinkers" have to stick together, so good for you and don't feel guilty about it. We turn to Dr. Google because our doctors just don't tell us enough and we want to be able to ask intelligent and relavant questions. That bugs them? Too, bad.
I haven't been in your shoes yet, so I have nothing constructive to offer. I'm so sorry that you are having to deal with this yet again, but I have faith that you'll ultimately get the best care plan for yourself because you won't settle for anything less. Thanks for sharing all of this with us and know that we are sending you hugs and prayers.
oldbeauty
Jan 05, 2019 - 2:56 pm
of the think-too-muchers, eh? Yes, I don't want to get stuck in analysis paralysis. Thanks for the kind words, MABound. Best wishes, Oldbeauty
CheeseQueen57
Jan 05, 2019 - 3:16 pm
I’ll admit to being in your little club too. Not all bad in this instance.
Lulu7582
Jan 07, 2019 - 7:56 pm
Personally I am like you...ask those questions......what is this lung nodule and ?? can it be biopsied or ?? is there chemo/ targeted therapy / immunotherapy meds that could knock it out??? When it's our body and our diagnosis I think it is perfectly acceptable to want answers and the best treatment. I bet if it was the gyn/onc's wife/significant other they would be doing everything possible to find the best treatment. So you go girl ask away and get those answers. Like you said in Feb you can go wherever you want and get another opinion. Hang in there. Sending you hugs xoxo
Lulu
MoeKay
Jan 05, 2019 - 3:26 pm
I haven't had enough time to overthink your current situation yet, but my initial reaction is that I would want to investigate the pros and cons of surgical exploration of the lone suspicious nodule. In case you haven't seen it yet, here's a link to a case report on a woman with stage 1B endometrial cancer and two pulmonary nodules from BMJ that might provide you with some food for thought: https://casereports.bmj.com/content/casereports/2018/bcr-2017-223015.full.pdf.
I hope your nodule turns out to be benign, but I also wanted to pass along information on a clinical trial my childhood friend who has recurrent endometrial cancer is participating in at Fox Chase Cancer Center. She is being treated with ONC201, which is the first compound to target cancer cell mitochondria and which has shown activity against endometrial cancer cells. https://oncoceutics.com/onc201-trial-begins-endometrial-breast-cancer/ My friend has been in the trial for about five months now and her cancer, which has only been found in her lymph nodes, remains stable at this point.
I'll keep overthinking your case and will post any additional thoughts.
Best of luck to you!
oldbeauty
Jan 05, 2019 - 5:45 pm
Thanks for the leads. I will read them. Yes, I think like you do; that excision now may be preferable, if feasible. It might forestall more chemo for awhile and I've read enough from ladies here that the chances of grabbing sufficient tissue from a 5 mm nodule, if they can find it, are likely not great. Thanks again for the research. Best wishes, Oldbeauty
ConnieSW
Jan 05, 2019 - 3:36 pm
Send me my membership card too
I've never been a worrier or negative person but do strive to be proactive rather than reactive. I like to think things through. It was a definite plus in my career.
i can't help with your decision but don't let anyone even try to change you. Word of the day is PERSIST.
Forherself
Jan 05, 2019 - 3:40 pm
Yes, I would say the cystoscopy left only the ureters and the kidneys as the source of your hematuria. And your lab work must have been fine for kidney function. Maybe they see it in patients after chemo. But that could be a question you ask them. Since you are informed about your cancer, why not write down all your questions. Each one is a good question but might be forgotten when you are talking to the doctor. They always try to weigh the dangers of teaatment vs the benefit. I would say you have good questions. Ask the doctor all of them. And all the best to you.
CheeseQueen57
Jan 05, 2019 - 3:57 pm
It just burns me up when I hear early stage endometriod cancer is almost 100% curable. Oh don’t worry. I was stage 3c grade 3 not in that category. But you were 1c, 2. You shouldn’t be going through all this. I hate cancer, specifically uterine cancer. Such a crap shoot!
MoeKay
Jan 07, 2019 - 2:59 pm
The Problem of Inadequate Risk Stratification Systems
Hi Cheese,
I think a lot of the misconception about the cure rate for early stage endometrial cancer arises out of the inadequate risk stratification systems used to determine risk of recurrence or nodal metastasis. It can't be overstated that not all stage 1 endometrial cancers are alike, and many stage 1 patients, especially those with what used to be stage 1c disease (now stage 1b since staging system changed), with grade 2 tumors, like Old Beauty and myself, have a higher risk of recurrence than a stage 1a grade 1 patient. Here is a study that concludes that none of the five major risk stratification systems showed high accuracy in stratifying the risk of recurrence or nodal metastases in patients with early-stage endometrial cancer. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4453957/ Also, some of the risk factors for recurrence are not even addressed in the staging system, such as LVSI, lower uterine segment involvement, etc. I suspect that my gyn-onc realized these staging inadequacies, since he refused to accept the pathologist's finding that I was a stage 1c. Instead he submitted my cancer to the National Tumor Registry as stage 2b, since he was adamant that my tumor had invaded the cervix.
Armywife
Jan 05, 2019 - 4:56 pm
I, too am ultra- in the research department. It drives my family nuts, but like others of you, everyone depends on me as the research queen. I was moved to tears at my last 3-month gyno checkup when my doctor said, "I really appreciate how much you have taken responsibility for your own care and how well-informed you are. You always have questions ready and you understand what's going on." In addition, the genetic counselor at MD Anderson, my second-opinion hospital, was thrilled that I understood genomic vs genetic testing, MSI-H, etc. I give full credit to this group for educating me beyond what I deserve. Yes, I've spent thousands of hours reading - literally read all the papers footnoted in the bios of all the gyn-oncs at Anderson - but because of that I was able to ask for tests that will determine treatment if I recur (and with Stage IVB, Grade 2, LVSI, positive pelvic wash I know it's likely.)
I think you're amazing, and I wish you the absolute best as you move forward. I feel sure you'll make the best decision.
oldbeauty
Jan 05, 2019 - 5:48 pm
Those are two solid platinum docs. Can we clone them, please? Best wishes, Oldbeauty
CheeseQueen57
Jan 05, 2019 - 5:38 pm
My urologist assumed I could read the disk of my last renal scan (which I had to have at an outside facility so he didn’t have it) and started telling me how to do the calculations. I told him this was a little bit beyond my capabilities. Sheesh! I know enough to be dangerous!
oldbeauty
Jan 05, 2019 - 5:50 pm
That's how I feel, too. Best wishes, Oldbeauty
evolo58
Jan 07, 2019 - 12:39 am
Oh, don't get me started on CT scans .....
OK, OK, I've often vented about them. But it's a litlte frustrating when three different radiologists classify an exact same area three different ways within a short time period in my CT scans.
As you know, CT scans find lesions, nodules, etc. Period. Often, it cannot distinguish between benign and malignant, and often, sometimes even the radiologist doesn't seem to know, judging from my scans! At this point, the area in question on yours is really small. Maybe there's not enough to get proper information on it on a CT scan yet. It's not even a twentieth of an inch.
Ct-scan-ese isn't an easy language, and there are lots of weasel-words. This is all my take on this, by the way. It is not official in any way, shape or form!
Other than a definite finding, the worst phrase seems to be "is consistent with". I think that's CT-scan-ese for "Yup. Barring something you'd see on the drama 'House" or some really rare event, you have it." I'd place the percentage at 80% or above. That one gives me the willies.
Next would be "concerning". The radiologist isn't exaclty sure, but the area in quesiton looks suspicious. That's closer to 60-80% or so. Some (maybe even more than just some) radiologists tend to jump the gun much sooner than others, and it seems that a few have some sort of automatic checklist where a whole bunch of stuff is concerning; hence the wide percentage. This is where the skill of the radiologist is really important. An over-eager radiologist can cause a whole of of unecessary tests and stress. This one is very stressful.
"Likely", IMO, is a weasel-word. Does that mean likely as in "It's cloudy outside and there is a 50% forecast of rain. I'd better bring an umbrella because it looks bad?" Or "The forecast didn't say rain, but it's cloudy and the clouds look weird. I'd better bring an umbrella, just in case?" The dictionary definition does not help at all ... "might happen" or "probable". I'd place that around 40-60% or so. Once again, this is where the skill of the radiologist comes into play. This one annoys the crap out of me AND is stressful.
Oh, and of course, there are other words and phrases. Honestly, there should be some sort of standardized CT scan dictionary.
Have you dealt with this radiologist before? Does he or she tend to have a cognitive bias when it comes to reading your scans? Sometimes I wonder if there should be THREE people reading your scans ... the initial radioloigst, a second radioloigst who has NO knowledge of your clinical history (not that some read it, anyway, as I found out) and is looking at this fresh, and then the much-more experienced radiologist who studies the scans and reports again and signs off. (Sometimes, I'm convinced he or she simply glances at it and signs the paperwork ... that scan is probably one of hundreds he or she will deal with at any given moment.)
Some medical professionals feel that radiologists should deal more personally with specific patients and their clinical histories, and I tend to agree. But that's another story.
And I wonder. I know that with breast cancer scans, radiologists tend to use a REALLY strong cognitive bias if they know you've had cancer before. I found that out first-hand already. It's good, I guess. But it is also extremely stressful for the patient. And insurance won't give you any of those follow-up tests for free. I wonder if once you have had cancer, do radiologists tend to be over-, over- picky now? Maybe sometimes to a fault?
And why, oh why must insurance companies be so stubborn about doing a follow-up PET scan? Are the subequent tests for "concerning" and "likely" really that cost-effective?
Right now, you're doing the right thing in checking this out. Weird things can show up in lung scans, both good and bad. I hope the little PITA is benign. You have been through enough.
LisaPizza
Jan 06, 2019 - 4:45 pm
I think much of it comes down to the radiologist covering his/her behind, which sadly is understandable in a society that loves to sue.
Rosesforever
Jan 06, 2019 - 6:21 pm
Thank you, you speak my language. I’m more then frustrated with the medical psycho babble even they can’t undestand. I recently had a MRI that made no sense and answered no question, so my oncologist asked my radiation oncologist, then a neurologist, then an orthopedic surgeon to read the scans for their opinions, none had any ideas what these 2 hip “lesions“ could be.
The words lesion, idiopathic, infarct bone, conngenital just about covers it all for scans. lets not even talk about lab tests which is a whole different language
It’s hard to know where to go to get the answers to help you make a decision about what You need to do next. You’ve been though so much already. You are armed with history, intelligence and What sounds like a good team. good Luck to ALL I look forward to following your journeys I’m sure I’ll learn something.
evolo58
Jan 09, 2019 - 11:16 am
You said it! Forgot about "lesion".
One of my favorites ... not.
A lesion can be scar tissue, a polyp, a tumor, etc. NIH is more concise than I:
https://www.cancer.gov/publications/dictionaries/cancer-terms/def/lesion
In laypersons' terms, it's some sort of weird thing on the scan that usually isn't there. It could be perfectly harmless or really scary. Bad or good. Many times, the only way you can better find out just what's in there is through biopsy, a PET scan, or the surgeon just cutting the blasted thing out. And insurance companies often refuse PET scans. Terrific.
I learned long ago in an unrelated instance that "idiopathic" is another word for "We haven't a blasted clue what is going on, either."
There is a part of me that wonders if I'll ever get a normal CT scan again, even if I'm clean ... or if any of us will. Are these radiologists going to nitpick on every speck now? (Actually, if you have a good one, he or she won't. But often, you don't get a good one.)
I mentioned the mammogram. Last year, I got a report that mentioned that something that I think has been inside me for years was suddenly a concern. Big, big deal. Much dismay. And as you ladies know from my account, a whole lot of undue stress. Seems like some of you ladies are experiencing the same thing with mammos! How strange that this happens after we've had endometrial cancer.
It was such a non-event that when I went to a second place for the diagnostic, the nurse scratched her head and wondered why the first place even mentioned the area. This type of stuff gets me thinking. It also made me really, really sick and stressed right before my endometrial follow-up and CA-125 test. Nice job.
Oh, and as a gran finale, when I had that November CT scan that you ladies also know set me on edge, one of the findings was an enlarged lymph node or two near that area. Well, duh. I had just had my boobs squeezed like a pancake for the diagnostic mammo a week or so before. I believe you ladies told me how a dignostic squishes you far harder than a screening. EGADS! I felt like that doll that if you squeezed it, the eyes pop out. I actually had a couple of broken blood vessels in the area for a short itme later. {EDIT ... I checked. Still do.) I felt like telling the gentleman that if HIS manly bits were squeezed like a pancake behind two plates of glass, I wouldn't be surprised if a couple of HIS lymph nodes were inflamed for a week or two, too.
Some of that CT scan, unfortunately, is a nasty problem. There is no way I can write all of it off. But yes ... it can be a real stressful hassle trying to translate everything and pick out what is of concern and what is not. A good onco can translate much of it, but there is often a murky area even after that.
And yes ... here you are, trying to make an intelligent decision with whatever info you can glean. Good luck trying to translate this stuff, oldbeauty, Rosesforever, and you other ladies! And I agree about the fanny-covering, LisaPizza. 100%.
oldbeauty
Jan 07, 2019 - 3:34 pm
Yes, this is one thing that bugs me. Even the doctors insist they cannot request that a specific radiologist read the films. I don't believe that myself. Radiology is one department that I experience as less than satisfactory, altho' in reality they may be tops. I have found their narrative reports unsatisfactory for a cancer patient. I want enough discussion that tells me definitively that the radiologist has proved the negative by describing features that would be present if it was a positive finding, and stating that those features are absent, hence a negative (good) result. Or, at least a statement that because of such and such an opinion cannot be rendered. The radiologist that read my Chest, Abdomen, Pelvis films is a radiologist in the Womens Cancer division. He's an Associate Professor but has no publications listed, which isn't to say he is not perfectly well qualified. My neck films was read by a full professor with lots of publications. Another gripe is that they dictate these reports and then apparently never proofread them to catch errors or omissions. I do want to explore a second opinion by a thoracic radiologist. I know there is a division of thoracic radiology, not at the Womens Cancer Center but at the main campus Cancer Center. What I really want is a provider to whom I am the customer, not the referring doctor. I want an appointment to sit down with her/him to go over this film and my others to trace the history of my lung nodules from 2015 to date. It may be that a thoracic radiologist is the one who would do a CT-guided needle biopsy so I want a good one that I can rely on. I will explore these issues with my living well/survivorship oncologist next Monday. Best wishes, Oldbeauty
evolo58
Jan 09, 2019 - 11:58 pm
GOOD radiology reports, IMO, are like chapters in a good novel. They should have some sort of consistent narrative. Bad ones are ones that make you think, "Say what?" They also have lots of weasel words that are vague. My medical oncologist apparently gets frustrated with bad ones as well.
For instance, there is one area in my liver that depending on the radiologist were either concerning, slightly resembling benign lesions, or benign. And not in a logical order. The first scan was concerning, the second was benign, the third was slightly-resembling.
Three radiology reports mention a single nodule in my lung. This last one said that though there were no new nodules and nothing changed since the last scan, they are bilateral Wait .... if there are no new lesions, how can the lesions be bilateral? There was a single one in the previous three reports. Huh?
The July report mentioned stranding in the lower right quadrant that might have had cancer cells, but seemed to be turning to fat. My old doctor opted for a watch and wait. This last report listed nodules in that area. So ... is this in place of the stranding, or in addition to it? Seems awfully coincidental it's happening in the exact same area! What happened to the stranding?
This last radiologist loved to use the words "for example", as in, "there are enlarged lymph nodes ... for example, one node is blah blah blah". So .... does this mean there are many of them in one area? Several? Few? One or two in that particular area? Or is this "for example" applying to my entire body? Kind of a big difference here!
Oh, and and the first CT scan picked up a nodule in one area. The radiologist personally told my PCP, who ordered the scan, that he was not concerned about the nodule. The report, however, made a much bigger deal of it. The PCP was starting to wonder if she was hearing things.
Like you, oldbeauty, I now read the background and credentials of the people doing these. The last one was done by a resident who apparently hasn't been one for long, and signed off by someone with only one more year of experience. The good ones were all signed off by a more-experienced radioligst who has been doing this for quite a while. With the exception of the first scan, the ones that I found clear and cohestive were the ones signed-off by the more experienced radiologists. It got to the point when if I saw a particular radiologist signed off on them, I would breathe a sign of relief. Coincidence? Makes me wonder.
Little Annie
Jan 07, 2019 - 11:51 am
Just one possible suggection for you. I have a lesion on my liver dianosed by a CT scan. To more closely determine if it is benign or cancer, a MRI will be done. You might suggect that to your doctor to better resolve your issue.
Forherself
Jan 07, 2019 - 2:24 pm
It is a helpful question to ask the doctor. Ask what they would do it it was them or their loved one sitting in your chair. Doctors are first supposed to do no harm. But then they get sued if they misss something. All shades of gray. I agree that an MRI or PET would be more specific. But I still think the fact that they are symmetrical would be very rare if they were mets.
oldbeauty
Jan 07, 2019 - 3:11 pm
WWYD. That's a good point, ask what the doctor would recommend to their mother. I don't understand your last sentence referring to "they are symmetrical." Was that directed to my situation or to another commenter? Best wishes, Oldbeauty
Forherself
Jan 07, 2019 - 4:07 pm
I was thinking of someone else.
Rosesforever
Jan 07, 2019 - 4:44 pm
I think I posted some time ago regarding my MRI. It was reported from the scan results that I had a lesion in both hips about the same place one larger than the other. No one ventured a guess as to what they might be. I will have a follow up MRI at the end of this month. Might I add I hate MRIs. My doc did say all imaging has become so sophisticated many abnormalities are found that are idiocsyncratic.
Forherself was kind enough to try to put a positive spin on it which a greatly appreciated.
Forherself
Jan 07, 2019 - 7:53 pm
Keep un informed of what you find out.
Rosesforever
Jan 07, 2019 - 4:53 pm
i have to tell you how much I appreciate all your posts. I love the gallows humor,, it‘s good to find a laugh somewhere amongst all this.
Keep posting and keep up the spirits. Thank you
derMaus
Jan 08, 2019 - 6:57 pm
Oldbeauty, I've been re-reading your post and trying to think of something intelligent to contribute, but others have said it much better. My only thought is this: you've had these spots before and they were manageable, which seems to indicate your immune system has some ability to contain them. I'm in a slightly similar situation and chose to do close monitoring, but then I'm on Keytruda so the dynamics are different. If you have the stomach to pursue that option it might allow you to see the natural growth rate - presuming there is one - and allow enough material for a definitive biopsy, IF it grows. If it remains stable to shrinks then you have your answer. Best wishes, this type of thing is just gawd awful. B
oldbeauty
Jan 09, 2019 - 7:55 am
derMaus/Bobbi, thanks for your thoughtful response. I think that, at its heart, you nailed the decision tree dilemma. Do I have the stomach for watchful waiting; to pursue a second-best outcome (after no growth) to actually hope for confined growth to the point where diagnostic avenues are feasible. I don't know. I missed a call from my new gyn/onc yesterday. I'll carry the phone with me today. It's funny you bring up my immune system. Poor hubby has a head cold now, as does one of my alt medicine providers. And let's not even discuss going to the gym every day where contagious people spread their germs. I remain well. I tell hubby that I have a very well functioning immune system...except I have cancer. I went up to a gyn/onc researcher last year after hearing him speak to feel him out whether he might be my new gyn/onc. Of course, he didn't know my history beyond my brief intro but his response indicated surprise that I was still alive after all these years and he said "you likely have a very strong immune system." I was a sickly child (recurrent tonsilitis and staph and strep infections) until I had my tonsils out at age 14. Since then, except for bronchitis maybe twice and the odd common cold every once in awhile, and getting chicken pox at age 25, I've never been sick a day. But I have cancer. Go figure. You offer an avenue for further exploration. Thanks again for weighing in. Best wishes, Oldbeauty
MoeKay
Jan 09, 2019 - 1:19 pm
Some Input on Suspicious Lung Nodule
Hi Old Beauty,
I found the below Q&A which I thought might provide you with a little more food for thought:
Suspicious Lung Nodule
Q: I had a 2.5 cm tumor removed 8 years ago (adenocarcinoma). Now there is a 4 mm nodule in my other lung that my doctor is just watching. Why don't they just take it out now rather than waiting for it to grow? How often does a 4 mm nodule really turn out to be non-cancerous in a person who already had lung cancer?
A: Given a prior history of lung cancer, I understand your apprehension about any nodules seen on your current scans. The reason that we don't surgically remove or irradiate every new lesion that arises is that these may turn out to be noncancerous, and we would hate to subject you to the risks of what might be unnecessary procedures. Furthermore, every surgical resection would incrementally decrease your overall lung function, which could pose problems if done repeatedly and unnecessarily.
Therefore, we try to determine if something is truly cancerous (or at least very, very likely to be cancerous) before subjecting you to surgery. A 4 mm lesion is too small to biopsy and is usually too small to light up on PET/CT. On that basis, it is reasonable to watch these lesions with interval CT scans. Should it grow or change, that is when we might pursue additional studies to help decide upon the need for resection.
To give you a sense of the rate of false-positive results: in the National Lung Screening Trial, 24.2% of patients who underwent screening with low-dose chest CT were found to have a nodule or some other "positive" finding. Of those nodules and findings, over 96% of them were ultimately found to be false-positives (not cancer)!
Here's a link to the entire Q&A: https://www.dana-farber.org/health-library/articles/ask-the-expert--q-and-a-on-lung-thoracic-cancer/ As you can see, the doctor providing answers to the questions is a thoracic oncologist at Dana Farber.
Of course, the above Q&A deals with lung cancer, but it might be somewhat helpful nonetheless given the explanation of the thought process that goes into dealing with small lung nodules.
oldbeauty
Jan 09, 2019 - 3:31 pm
Thanks, MoeKay. I bookmarked that for a re-reading. How do you find this stuff? I find in doing this and other reading that I am less anxious and more hopeful that there could be a variety of approaches that may help me attain remission again. Thanks for researching on my behalf. Best wishes, Oldbeauty
Forherself
Jan 09, 2019 - 6:16 pm
Another way to think about things.
I have walked down this road. To treat or not to treat. One of the thoughts I had along the way. Women are at about a 10% risk of developing breast cancer. But we don't think about chemo and radiation to prevent breast cancer from occurring. I think the fear we feel can change your thought process. Just saying this is another viewpoint. We are the once bitten twice shy crowd.
Comments
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cmb, you are the Bomb!!
Thank you for this. I value the comments from the other ladies, and now I will bookmark this as I am in the "watch and wait" mode until next CT in early April. Now, if only I could recover the exhaustive "About Me" profile that I did not save as a Word Doc after working on it laboriously...for Bobbi/der Maus, who urged me as a long time survivor to post my info. I will put it on my list of things to do to tackle that project again. Thank you for your efforts. Yours is a humbling public service. And to think that one of us sufferers is doing the job that the host of this discussion board really ought to be doing. Best wishes. Oldbeauty
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Yes, cmb is the bomb for doing all ofoldbeauty said:cmb, you are the Bomb!!
Thank you for this. I value the comments from the other ladies, and now I will bookmark this as I am in the "watch and wait" mode until next CT in early April. Now, if only I could recover the exhaustive "About Me" profile that I did not save as a Word Doc after working on it laboriously...for Bobbi/der Maus, who urged me as a long time survivor to post my info. I will put it on my list of things to do to tackle that project again. Thank you for your efforts. Yours is a humbling public service. And to think that one of us sufferers is doing the job that the host of this discussion board really ought to be doing. Best wishes. Oldbeauty
This hard work to recover these invaluable threads. But I have to say that the best part of rereading these recent threads is that the collective experience and knowledge that was not lost is both an inspiration and an invaluable resource going forward. I am stage 1a serous/clear cell person who fully expects (expect the best plan for the worst) a recurrence in my future. If I do recur (next week is my 1st 3 month checkup) I know that there are so many over thinkers here that I can rely upon to help me through. I, too, have a "lung nodule 8.1 mm" that they are "watching", which scares the **** out of me. Time will tell, but I also have a nagging pain in my lower right back that I am hoping is nothing. Thanks to all of the over thinkers and especially to cmb for rescuing these threads.
Xenise
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