New lurker taking the leap to participant

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onedayatatime
Posts: 5
Joined: Thu Dec 16, 2021 7:25 pm

New lurker taking the leap to participant

Postby onedayatatime » Mon Dec 27, 2021 8:03 am

I've been a lurker since I was diagnosed with colon cancer in Oct '19. I am, even now, not sure about being a participant because I'm not sure I have anything to contribute or to ask. I only want to vent, and then to see if anyone of you can set me straight re my expectations. I apologize for the long post and realize that few will get through it all (I’m sure you have better things to do with your time) but it was good for me to vent (if allowed).

I think I should feel elated with my most recent test results, etc., but all I feel is numb. I have had a lot of drama in the past two years. When I had my emergency surgery, I cried because of my ileostomy but I have never cried, not even to this day, because I was diagnosed with stage iv cancer. I have a practical mindset so all I wanted were the facts and next steps. I’ve cried from frustration when I didn’t get these things, but not because of cancer.

The past few months have been intense for me. I’ve had the trifecta of tests: a colonoscopy, CEA blood test and CT scan all within a month. I was stressed, to say the least. I wanted more clarity than I received, and yet, I’m told I’m NED so I should just “move on”.

My colonoscopy went well – I guess – because my surgeon completed the procedure but didn’t talk with me or schedule a follow-up phone meeting with me. The nurse said I don’t have to see him for another 3 years. I’m confused. My sister had no polyps but he wants to see her in 2 years and yet, I’m the one with cancer, and he told me three years. I just wish I could have spoken with him to understand why, and to ask what he did see during the procedure.

My CEA is 1.8, which is good but I do wonder if it should be even lower since my CEA did rise with cancer, but not into the double digits.

I feel so unhappy with my oncologist. He’s done everything correctly. He’s ordered tests, got me great specialists, even ordered tests that my surgeon should have and didn’t (in order to schedule my ileostomy reversal), and yet, he doesn’t listen to me, and he and I do not see eye to eye on what is important for me to know about my CT scan results.

I am a doctor’s worst nightmare. I look at my actual CT slides and read the report from the radiologists. I have around 9 nodules on my lungs. At times, one radiologist will identify a few as “solid” but I get very little consistency in the reporting. There are times when one radiologist will identify 3 or 4 as “solid” but then the next one will not identify those same nodules, but another set, even though I can still see the previously identified ones on the CT scan. Often the nodules are not sized in the report so I’m left to wonder if they have grown. The reports usually say “no significant change” or “stable”, but then all of a sudden a nodule will appear out of the blue and yet, it’s not sized or identified as new.

This past CT scan showed 4 nodules specifically identified and circled (the other 5 are still there). One is new but not sized. After looking at the CT slides and reading the report I was frustrated and upset and all the pent up stress just got the best of me and I went to my oncologist’s office to see his nurse about asking him to ask the radiologist to size the nodule he circled, and he was in a clinic so he saw me. Immediately he walked in the room and just talked and talked. Inside I wanted to shout “Shut up and listen to me!!!” Eventually, he went quiet and I was able to talk with him about my frustrations. I asked him to ask the radiologist to size the four nodules he specifically circled and to let me know the size. One of the new nodules is at my surgery site so it could be scar tissue but he circled it as a “solid nodule”. Also, my oncologist said he never looks at the actual CT scan but only reads the reports so he actually didn’t know what I was talking about when I kept referencing the circled nodules.

I also talked with him about chemo. I really wanted chemo after my VATS, but he said I didn’t take too well to chemo and he wanted to leave it for when/if I really needed it. I understand, but I can’t help but feel I missed a step in my treatment. Have you had VATS without follow-up chemo?

After meeting with him, I told him I’ll complete the blood test every 3 months but I only want one ct scan in Dec. It’s been 20 months since my last chemo treatment so if he isn’t going to give me chemo then I want it out - I just can’t take being told I’m fine but then looking at the port everyday.

So, after over two years of surgeries, hospital stays, infections, procedures, and tests I will get my port removed in Jan and am determined to live my life as NED (is this the same as remission?) rather than as someone with colon cancer.

If you’ve made it this far in the post, thank you, and I would love to hear your thoughts.
57@dx:Oct19 emgncy Lt-side surgery/rt-side ostomy/Stage 4
CEA:5/T4N0M1/lung met 14.7mmabscess 7 wks hospital
Jan20port/CEA4.4/chemo 4 rounds/CEA3.7/bone scan
Mar20 chemo stopped due to ostomy/dehyd/kidney damage/neuropathy/blood clot
6 mths shots for blood clot/CEA3.2
Jun20 CT (7 nodules 1.3mm–7.64mm) met 9.9mm
Jul20 reversal
Sep20 Iron infusions
Dec20 CT met 18mm CEA6.7
Jan20 biopsy, PET
Feb21 VATS
Jun21 CT stable CEA2.1
Jul/Aug21 Cataractx2 due to chemo/CEA2.0
Dec21 2 new nodules at VATS surgery site/CEA1.8
2022 Port out when?

roadrunner
Posts: 204
Joined: Sun Jan 12, 2020 8:46 pm

Re: New lurker taking the leap to participant

Postby roadrunner » Mon Dec 27, 2021 1:27 pm

Your signature says “two new small mets at VATS surgery site” but you say you are NED. Is one of those statements an error?

As you likely know, the key to diagnosis of small pulmonary nodules in a cancer patient is growth or stability over time. You did not include much information about that. I recognize that this has been a frustration for you, but I think that just means you need better information on the point. The scans exist—why not forward them to someone new for an analysis? In your situation, that would be a primary consideration for me.

I assume that you’ve researched the effects of chemotherapy after pulmonary metastasectomy. If you have, you know it’s controversial. My reading indicates at least a PFS benefit, and perhaps a non-negligible OS benefit (though that’s much less clear).
7/19: Rectal cancer: Staged as IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (side effects/reduced size est. 70-75%)
neoadjuvant chemorad 11/19
4 rounds of FOLFOX July-August 2020
ncCR found 10/20; biopsies negative
TAE 11/20, small amount of tumor removed, lung nodules orig id’d 6/20 stable Nov 2020
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
VATS 12/8/21 to remove sub-pleural met 7mm. Considering SBRT for remaining nodule.

JJH
Posts: 352
Joined: Mon Apr 24, 2017 7:26 am

Re: New lurker taking the leap to participant

Postby JJH » Tue Dec 28, 2021 12:45 pm

onedayatatime wrote:... I only want to vent, and then to see if anyone of you can set me straight re my expectations.....If you’ve made it this far in the post, thank you, and I would love to hear your thoughts.

Yes, I have some thoughts, but I also have a few questions, but first of all my thoughts...

From what I understand from your long post, your expectations are to have better quality information from your doctors (surgeons, oncologists, radiologists) whenever you are given your results, whether they be CT scan reports, lab reports, colonoscopy reports, surgery reports, or whatever.

To understand what is meant by "better" or "more" information, though, we must first understand the different types of information. This can be done by reviewing the levels of the DIKW data pyramid. I apologize if this seems a bit too theoretical, but I think that this is necessary in order to understand what you have been given in these reports versus what you expect to receive.

Image

There are 4 basic levels in a knowledge pyramid - Data, Information, Knowledge, and Wisdom (DIKW). Ideally, what we would like to receive is Wisdom, in other words, a perfect understanding of our situation that will allow us to make plans and to understand what is likely to happen. Unfortunately, Wisdom is very hard to come by in the medical context because there are so many different things that need to be taken into consideration, and a lot of the underlying information is imperfect and perhaps unreliable. What we are given in the reports is usually something less profound.

At the bottom level of the pyramid is raw data. Here you are given a lab report with numbers but no context to let you know if the numbers are normal or not. Or you could be given a set of CT scan images with different shades of gray but with no context to give meaning to the images. What you need in order to reach the next higher level is "context".

At the second level of the pyramid the raw data is converted to information by providing units of measurement and other details. For example, a lab result could give the units of measurement and the normal range cut-offs. For a scan report, the report could give the number, size, shape, density and specific location of the spots seen in the images. At this level of the pyramid you do have some facts, but you still lack interpretation. In other words, you know more about the details, but you still don't know what it means for you. What you need in order to advance to the next level is "interpretation" -- interpretation by an expert who knows what these facts mean, given the overall context.

At the third level of the pyramid the factual information is converted to knowledge -- knowledge about what this means for you, the patient. For example, at this level a CEA value could be interpreted as normal or as abnormal, depending on its level now as compared to its previous level, and CT scan spots could be interpreted as likely benign, or likely malignant depending on the profile of factual data for each of the spots. But this knowledge doesn't tell you what action you or the doctors should consider taking. You need more than just knowledge that things are stable for the time being, or that things are getting worse. What you need in order to advance to the next level is the wisdom of an experienced expert who has seen these patterns many times before and can provide advice on what action to take.

At the fourth and final level of the pyramid the knowedge is converted to actionable wisdom -- wisdom about the best thing for you to consider doing now and in the near future. For example, at this level an elevated CEA value could be considered as being insignificant since it is still a single digit and still within the expected range, and for a CT scan report, the wisdom could be that these spots are likely malignant but there are too many of them and too close to important blood vessels to attempt surgery right now, so additional chemo is recommended to try to reduced their size and number.

So, if you have followed me so far, I think you get the picture. There are different levels of information, and we always want the best information we can get. However, sometimes this is not possible. For example, a CEA value cannot definitively tell us whether we have an impending recurrence or not, and a CT scan cannot definitively tell whether a spot is a tumor or just a scar. These findings only constitute partial evidence. If the findings are equivocal or uncertain, the doctor may declare No Evidence of Disease (NED), in other words there is not enough evidence for the doctor to say definitively whether disease still exists or not. So, NED does not mean "no existing disease". Rather, what it means is that the technology used so far cannot make that determination. Better technology might be able to make that determination, but the technology available at the moment cannot.

Sometimes the problem is not the lack of higher technology, but the lack of experience on the part of the doctors or specialists who are responsible for interpreting the results. In that case, there is the option to send the data files out for a second opinion, hoping that the new reviewers will be more experienced than the original reviewers.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

MadMed
Posts: 79
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: New lurker taking the leap to participant

Postby MadMed » Tue Dec 28, 2021 1:54 pm

Nice, i'm totally stealing that! :D
Excellent implementation of Maslow's hierarchy of needs.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
surgery postponed until after 2/23 sigmoidoscopy

onedayatatime
Posts: 5
Joined: Thu Dec 16, 2021 7:25 pm

Re: New lurker taking the leap to participant

Postby onedayatatime » Wed Dec 29, 2021 2:16 am

Thank you, roadrunner, for reading my post and responding.

I subconsciously wrote "mets" but meant "nodules". At this point, we cannot know what they are and my oncologist said they might be scar tissue because they are close to the vats site, however, he doesn't look at the actual CT scan images so he doesn't know what I'm referring to and they were not sized by the radiologist (even though they are circled as solid nodules). So I'm confused about why they are singled out but not sized.

On the issue of chemo after vats, I do know that it isn't always necessary. My oncologist said that if I hadn't had chemo prior to the vats then I would have been given it after, however, I only had 4 treatments so I feel like I was not fully treated. My surgeon (who is part of my team that meets monthly) thought chemo would have been made an option. I understand why he doesn't want to give this to me but I definitely feel it might have given me some answers re the nodules. Since I have quite a few nodules, it might have been nice to know if they responded to the treatment, and therefore could be identified as malignant. Two are 7.5mm so it would have been really good to see if there was any change to those two (shrunk and regrown after treatment) much like the one that was removed.
57@dx:Oct19 emgncy Lt-side surgery/rt-side ostomy/Stage 4
CEA:5/T4N0M1/lung met 14.7mmabscess 7 wks hospital
Jan20port/CEA4.4/chemo 4 rounds/CEA3.7/bone scan
Mar20 chemo stopped due to ostomy/dehyd/kidney damage/neuropathy/blood clot
6 mths shots for blood clot/CEA3.2
Jun20 CT (7 nodules 1.3mm–7.64mm) met 9.9mm
Jul20 reversal
Sep20 Iron infusions
Dec20 CT met 18mm CEA6.7
Jan20 biopsy, PET
Feb21 VATS
Jun21 CT stable CEA2.1
Jul/Aug21 Cataractx2 due to chemo/CEA2.0
Dec21 2 new nodules at VATS surgery site/CEA1.8
2022 Port out when?

onedayatatime
Posts: 5
Joined: Thu Dec 16, 2021 7:25 pm

Re: New lurker taking the leap to participant

Postby onedayatatime » Wed Dec 29, 2021 2:38 am

Thank you, JJH, for your thoughtful response and valuable information.

My understanding is that my oncologist will send the CT scan to a radiologist who will re-examine the results. I'm hoping to hear by the 6th.

I think I am dealing with some mistrust issues, and that isn't always a great thing.

Before my emergency surgery I knew something was wrong. My symptoms started around one year after a clear colonoscopy. Our family has a three generation history of colon cancer (grandfather-mother-sister) and I think my doctor thought I was being paranoid about regular bowel issues (constipation, pain, etc.) and she sent me for an xray. I was told I had a lazy bowel and to eat more fibre. Okay, I did that, and it helped, but the stomach pains, fainting feelings, and the sense I was going into shock increased. Soon, I was hardly eating (mostly so I wouldn't be in pain during working hours and when travelling). Finally, I got a new doctor who sent me for a scan but by that time, I was blocked. I told myself I would never allow a doctor to determine my path to wellness again. I would trust, but also research and look into all options.

It is for this reason that I obtain all my written reports and actual imaging records.

On the other hand, I recognize that I am not in immanent danger (unlike when I had a total blockage and suffered two abscesses). So that is why I decided I would rely on my blood tests, and one CT scan a year. But before I'm 100% sure I am contemplating requesting a new oncologist.

I do need wisdom because without it I do flounder into mistrust, worry, and stress.
57@dx:Oct19 emgncy Lt-side surgery/rt-side ostomy/Stage 4
CEA:5/T4N0M1/lung met 14.7mmabscess 7 wks hospital
Jan20port/CEA4.4/chemo 4 rounds/CEA3.7/bone scan
Mar20 chemo stopped due to ostomy/dehyd/kidney damage/neuropathy/blood clot
6 mths shots for blood clot/CEA3.2
Jun20 CT (7 nodules 1.3mm–7.64mm) met 9.9mm
Jul20 reversal
Sep20 Iron infusions
Dec20 CT met 18mm CEA6.7
Jan20 biopsy, PET
Feb21 VATS
Jun21 CT stable CEA2.1
Jul/Aug21 Cataractx2 due to chemo/CEA2.0
Dec21 2 new nodules at VATS surgery site/CEA1.8
2022 Port out when?

JJH
Posts: 352
Joined: Mon Apr 24, 2017 7:26 am

Re: New lurker taking the leap to participant

Postby JJH » Fri Dec 31, 2021 10:17 am

Thank you for your replies and for your elaborate signature.

From the statements you have made so far, there are several points that I find puzzling or hard to explain.

First, I don't see how you could have had an obstructive T4 tumor at age 57 when you had just had a clear colonoscopy only a few years earlier. Normally, an adenocarcinoma tumor of that size would have been growing for a good 5 to 10 years and would have appeared on a colonoscopy either as a tumor, or as pre-cancerous polyp for a colonoscopy that had been done in your early fifties.

If you don't mind, I would like to ask for clarification on a few issues:

1. When did your so-called "clear" colonoscopy take place? At what age?
2. Do you have a written copy of the colonoscopy report that went with that procedure?
3. Do you know why your other doctor prescribed an X-ray instead of a CT scan or an MRI scan?
4. Which part of the body was X-rayed, and were there any abnormal findings for that X-ray procedure?

Thank you.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

onedayatatime
Posts: 5
Joined: Thu Dec 16, 2021 7:25 pm

Re: New lurker taking the leap to participant

Postby onedayatatime » Sat Jan 01, 2022 7:36 am

JJH,

Here are the answers to your questions.

"From the statements you have made so far, there are several points that I find puzzling or hard to explain." It is for that reason that my gp did not believe I had a serious issue.

"First, I don't see how you could have had an obstructive T4 tumor at age 57 when you had just had a clear colonoscopy only a few years earlier. Normally, an adenocarcinoma tumor of that size would have been growing for a good 5 to 10 years and would have appeared on a colonoscopy either as a tumor, or as pre-cancerous polyp for a colonoscopy that had been done in your early fifties."

"If you don't mind, I would like to ask for clarification on a few issues:"

1. When did your so-called "clear" colonoscopy take place? At what age?
The colonoscopy was not "so called" clear but it was fully clear. No polyps and the doc recommended a colonoscopy in 5 years (mum/sister had colon cancer so 5 years is the recommended time rather than 10 years). I had my first at 50 '12 and the next one at 56 (I was slow at booking the appointment). I had that colonoscopy Feb '18 and my symptoms began in Feb '19. I saw my GP three times (Feb, Mar, May) and she didn't want to send me for a colonoscopy.

I travel a lot for work and wasn't able to get a new GP until September '19. By that time, I couldn't eat without pain. She sent me for a colonoscopy but even she was skeptical it was the cause of my issues. She thought IBS.

I had been using Restoralax for a while which allowed me to have regular thin bms but the prep for the colonoscopy caused me to vomit violently for hours and I had only a small bm. I contemplated going to the hospital but I hate hospitals so decided to just get the colonoscopy.

I had to lie to the doctor doing the colonoscopy and told him I had some bms because he wasn't going to proceed if I hadn't prepped properly and I was desperate for the colonoscopy. He was only able to get a little way up before he hit the blockage. I was in intense pain due to the trapped gas. I should have gone to the hospital then, too, but again, I waited.

I got a CT which showed the blockage and the lung met. I saw the surgeon and he admitted me to hospital right away. By that time, I had not had a bm since my prep and I had not eaten for days (only liquid). It had to be an open surgery and I was given a ileostomy (which for me, was more devastating than the cancer diagnosis).

I spent more than 2 weeks in hospital before being released but was readmitted to hospital a few days after leaving due to abscesses on both sides of my abdomen. I spent another 5 weeks in hospital.

Even my surgeon cannot explain the quickness of the growth.


2. Do you have a written copy of the colonoscopy report that went with that procedure? Yes, it was clear. He even showed me photos in a follow-up appointment.

3. Do you know why your other doctor prescribed an X-ray instead of a CT scan or an MRI scan? She was skeptical that my symptoms were serious. She told me to add flax to my diet, that I had constipation, a lazy bowel. The x-rays showed a constipated bowel.

4. Which part of the body was X-rayed, and were there any abnormal findings for that X-ray procedure?
CR ABD SERIES 2 VIEW X101B/The report came back that it was full and I was constipated.
57@dx:Oct19 emgncy Lt-side surgery/rt-side ostomy/Stage 4
CEA:5/T4N0M1/lung met 14.7mmabscess 7 wks hospital
Jan20port/CEA4.4/chemo 4 rounds/CEA3.7/bone scan
Mar20 chemo stopped due to ostomy/dehyd/kidney damage/neuropathy/blood clot
6 mths shots for blood clot/CEA3.2
Jun20 CT (7 nodules 1.3mm–7.64mm) met 9.9mm
Jul20 reversal
Sep20 Iron infusions
Dec20 CT met 18mm CEA6.7
Jan20 biopsy, PET
Feb21 VATS
Jun21 CT stable CEA2.1
Jul/Aug21 Cataractx2 due to chemo/CEA2.0
Dec21 2 new nodules at VATS surgery site/CEA1.8
2022 Port out when?

JJH
Posts: 352
Joined: Mon Apr 24, 2017 7:26 am

Re: New lurker taking the leap to participant

Postby JJH » Sun Jan 02, 2022 8:40 am

Onedayatatime,

Thank you for the detailed answers to my recent questions. Very informative.

I would like to fill out your medical history with some of the important items that are still missing, but right now I am traveling and don't have time to create the list of your missing data items.

When I get back I will post the list of items that I think would make your recent medical history more complete and more understandable.

The really striking revelation is that you had an obstructive T4b tumor in September 2019 after having had a clear colonoscopy in February 2018, only about a year and a half earlier.

I need to see a few more specific data points before I can make sense out of this bizzare event.

More details later ...
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

JJH
Posts: 352
Joined: Mon Apr 24, 2017 7:26 am

Re: New lurker taking the leap to participant

Postby JJH » Mon Jan 03, 2022 9:13 am

  • Comprehensive Medical History Form
    Here is a link to a 6-page comprehensive medical history form available on-line:

    As I mentioned earlier, I think it would be good if you could prepare a comprehensive medical history for your own use that you keep in your file and have available whenever you have an appointment with a new doctor. The kind of information included in the form above is what doctors need in order to understand the current status of a patient. This particular form even has a section on family history of various health problems.

    You could fill out this form and bring a copy of it to your appointments to show to new doctors as you meet with them.
    .
  • Expanded Signature Template
    There is also a template for an expanded, structured signature that you could use while updating your information here on this Forum:

    The data items outlined in this template are ones that are especially useful for members here who want to have a general overview showing the outcomes of various phases of diagnosis, staging, treatment, and follow-up/surveillance. It would be very helpful if you could update your on-line information with the main data items in this template, especially those items derived from pathology and biopsy results, such as:
    .
      Tumor location: If RC, then upper, middle or lower rectum, and distance from anal verge. If CC, then cecum, ascending colon, hepatic flexure, transverse colon, splenic flexure, descending colon, sigmoid colon, or recto-sigmoid junction, etc.
      Tumor type: Adenocarcinoma; villous adenoma; signet ring-cell carcinoma, etc.
      Tumor size (in mm or cm)
      Tumor grade:
        G1: Well differentiated (low grade)
        G2: Moderately differentiated (intermediate grade)
        G3: Poorly differentiated (high grade)
        G4: Undifferentiated (high grade)
      Stage: Stage I, Stage II, Stage III or Stage IV (with subscript, if applicable)
      Positive lymph nodes: eg., X positive out of Y sampled.
      Mets: Location of metastases, if any (e.g., mets to liver, mets to lungs, etc)
      Baseline CEA value: (Very important! Must be taken before start of first treatment intervention )
      Lymphovascular invasion (LVI) (if known): present vs. absent
      Perineural invasion (PNI) (if known): present vs. absent
      Surgical margins: clear or involved
      BMI
      Lynch status (if known)
      MSI status (Required for all CRC patients, regardless of stage)
      KRAS/BRAF status (Required for all Stage IV patients)
      Comorbidities (i.e., other relevant chronic conditions)
        Obesity: (BMI > 30)
        Cardiovascular disease (CVD)
        Type II diabetes
        Smoker
    .
  • Other data items -- Important items not listed on any of your hospital reports
    There are some other important items mainly related to home environment, work environment, life-style management, etc., that I will address later on.

    For example, there is the question of what diet was followed in the first few weeks just after the February 2018 colonoscopy. If the diet was a poorly balanced, "junk food" diet, it could have opened the door to an infestation of bad bacteria that might then have dominated the bowel for the following months. When a bowel clean-out is done for a colonoscopy, this procedure essentially wipes out the good bacteria in the colon. The balance between good bacteria and bad bacteria needs to be restored soon after completion of the colonoscopy. This can be done if the doctor prescribes pre-biotics and pro-biotics in the post-colonoscopy period. There are several articles in the literature that refer to this:
    And there are a number of other life-style examples like this that could be mentioned and that might be relevant to the rapid development of new polyps in the colon.
Last edited by JJH on Tue Jan 04, 2022 3:39 pm, edited 1 time in total.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

boxhill
Posts: 767
Joined: Fri Apr 06, 2018 11:40 am

Re: New lurker taking the leap to participant

Postby boxhill » Tue Jan 04, 2022 3:19 pm

I had an obstructive T3 or T4 tumor (difference of pathological opinion) in the hepatic flexure 8 years after a clear colonoscopy. It most likely arose from a sessile polyp. The surgical team intimated that they wondered about the accuracy of the colonoscopy.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
6/20 Stop Key
All MRIs NED

JJH
Posts: 352
Joined: Mon Apr 24, 2017 7:26 am

Re: New lurker taking the leap to participant

Postby JJH » Wed Jan 05, 2022 1:30 am

onedayatatime wrote:abscess 7 wks hospital

Would you be able to give a few more details about the onset and treatment of your abscesses? For example, did the two abscesses appear at the same time? Were they of the same type, i.e., both external, surgical-site related, or both internal organ-related abscesses? Were they possibly there before surgery ever took place -- e.g., diverticulitis pocket abscesses -- or do you think they emerged during surgery or just after surgery?

Did the doctors have anything to say about how the abscesses might have developed? Did they seem defensive or evasive whenever you asked questions about the origin of the abscesses?

Did the doctors test the abscesses to see what kinds of bacteria were involved? Do you know what methods or medications they used to get rid of the abscesses? Do you know why it took so long for the abscesses to disappear?

Do you know where your hospital stands with respect to incidence of hospital-acquired infections such as C.DIFF (Clostridioides difficile) and MRSA (methicillin-resistant staphylococcus aureus)? In some regions, the government rates the hospitals with indicators like the number of "hospital-acquired infections", and the number of "30-day hospital re-admissions" after major surgery.

    "The 2020 National and State HAI Progress Report provides data on ... surgical site infections (SSIs), methicillin-resistant Staphylococcus aureus (MRSA) bloodstream events, and Clostridioides difficile (C. difficile) events...

    Each day, approximately one in 31 U.S. patients (https://www.cdc.gov/hai/eip/antibiotic-use.html) contracts at
    least one infection in association with his or her hospital care, underscoring the need for improvements in patient
    care practices in U.S. healthcare facilities. While much progress has been made, more needs to be done to
    prevent healthcare-associated infections in a variety of settings."


    Reference: https://www.cdc.gov/hai/data/portal/progress-report.html

In addition, some guidelines are available on how to minimize the chances of getting a hospital-acquired infection:


Tip: If you are going into the hospital this month to have your port removed, you should have a look at the guidelines above before your appointment.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

onedayatatime
Posts: 5
Joined: Thu Dec 16, 2021 7:25 pm

Re: New lurker taking the leap to participant

Postby onedayatatime » Thu Jan 06, 2022 1:20 am

Thank you, JJH, for all the links and information you have shared. I appreciate the time you have taken to lead me to all of this valuable information.

I'm looking at my ctscan right now and it shows an abscess of 92.2mm x 26mm on my left side and an abscess of 29.6mm on my right side. The drain was placed into my left side. A nurse dislodged it about a week after the drain was placed so I had to have another inserted. Never did see that nurse again after that.

As you can imagine, I was extremely ill. I had just had major surgery. I had to have 2 TPN bags for nutrition because it had been weeks since I had solid food. My ileostomy was extremely active and all liquid (which later made chemo difficult). I was very weak and could barely walk. Breathing was laboured and oxygen was lower than they wanted it to be (lots of fluid in the lungs). To compound all of this, I am allergic to penicillin which was the best antibiotic to treat the abscesses. The pharmacist talked with me about trying it but the side-effects of full-body hives prevented them moving forward with this approach. My surgeon said that because of this, the two antibiotics he could put me on were not as effective (Flagyl and another antibiotic). I had a lot of severe side-effects from Flagly but he had to use it since options were limited. I was also given morphine, zofran, and gravol. I could barely keep food down but eventually, after seven weeks, recovered enough to go home and eat some solid food.

My surgeon didn't seem defensive, but honestly, I wasn't surprised. It was a difficult surgery and I was blocked so there was waste which seeped from some perforate bowel. The hospital has a good record re C-diff and MRSA and it wasn't either of these things (I was tested).

Due to the explosion of Omicron, all elective surgeries have been cancelled, so my port removal will not happen this month - maybe March.
57@dx:Oct19 emgncy Lt-side surgery/rt-side ostomy/Stage 4
CEA:5/T4N0M1/lung met 14.7mmabscess 7 wks hospital
Jan20port/CEA4.4/chemo 4 rounds/CEA3.7/bone scan
Mar20 chemo stopped due to ostomy/dehyd/kidney damage/neuropathy/blood clot
6 mths shots for blood clot/CEA3.2
Jun20 CT (7 nodules 1.3mm–7.64mm) met 9.9mm
Jul20 reversal
Sep20 Iron infusions
Dec20 CT met 18mm CEA6.7
Jan20 biopsy, PET
Feb21 VATS
Jun21 CT stable CEA2.1
Jul/Aug21 Cataractx2 due to chemo/CEA2.0
Dec21 2 new nodules at VATS surgery site/CEA1.8
2022 Port out when?

JJH
Posts: 352
Joined: Mon Apr 24, 2017 7:26 am

Re: New lurker taking the leap to participant

Postby JJH » Sat Jan 08, 2022 4:33 am

onedayatatime wrote:Feb21 VATS

I have a couple more questions:

1. For your VATS procedure last year, did the surgeon or the oncologist mention that this surgery was done with "curative intent" - - i.e., that this was considered to be the final treatment for you?

2. If so, did any of the doctors mention transitioning now into a 5-year follow-up period managed with a Survivorship Care Plan?

It seems to me that if you are considering going forward as a "NED-for-now" patient without any specific plans for more chemo or more surgeries, then it would be a good time to consider setting up a Survivorship Care Plan.

There are templates on-line that can be used for setting up such a plan. Usually, this involves the preparation of 2 documents: a Treatment Plan (TP) that describes all of the cancer treatments received so far, and a Survivorship Care Plan (SCP) that outlines all of the main health objectives to be monitored over the next 5 years, including both cancer-related objectives (e.g., periodic bloodwork and scans to check for possible recurrences) as well as a host of other monitoring activities to check on non-cancer problems that might be expected to arise (e.g., tests for renal insufficiency, iron-deficiency anemia, peripheral neuropathy, osteoporosis, cataracts, immunodeficiency, gluten or lactose intolerance, etc., etc.)

A simple 2-page planning template for this is included in the link below:


Some of the non-cancer problems that might be expected to appear due to long-term effects of chemotherapy -- and that need to be monitored in the 5-year follow-up period -- are shown here:


Some of the rules to follow in order to prevent recurrences, or to defer onset of recurrences, are shown here:


Dr. Servan-Schreiber developed and used these rules, and he survived an additional 15 years after his initial Stage IV recurrence.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)


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