Questions before the Oncologist Visit

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Indigo
Posts: 4
Joined: Sat Mar 21, 2020 9:33 pm

Questions before the Oncologist Visit

Postby Indigo » Sat Mar 21, 2020 10:18 pm

Hello,
I have an appointment with my oncologist next week and I am trying to gather what kind of chemotherapy she may suggest.
I was wondering if I have a choice of what kind of treatment I can pursue. And what are kind of issues that I can expect during the chemo ?
Based on this forum vast experience, I was hoping if I can get some information prior to my Oncologist visit ?
Thank you,
Indigo

Due to signature limitation, I could add everything that I wanted to say. Thought to share as below :
2020
01/27 - Colonoscopy, Age 43, Likely Malignant tumor at recto-sigmoid junction, 16cm above.
01/31 - Colonoscopy Report - Moderately differentiated
01/31 - CT - Clean, few sub centimeter Liver legions, indeterminate for metastasis
02/05 - Ultrasound Liver - Indeterminate.
02/12 - PET Scan Clean. Liver legions may be below PET resolution.
02/12 - MRI Liver with Eovist - Hypo-enhancing lesions within segment 5 and 7 measuring up to 1.3 cm, concerning for metastases
02/20 - MRI ABD / Pelvis with / without contrast - Liver lesions favored to represent hemangiomas. A 1.5 cm lobulated le hepatic cyst is again noted. Based on this Liver was considered clean and surgery was recommended.
02/25 - Colon Resection Surgery, discharged on 02/27.
03/10 - ER visit and hospital stay due to small bowel obstruction. Bowel rest and recovered without any intervention
03/10 - Surgery Pathology report - 1/16 lymph node positive. AJCC Pathologic Stage: pT2N1a
03/26 - Appointment with Oncologist
2020
01/27 - Colonoscopy, Age 43
01/31 - Colonoscopy Report - Moderately differentiated, recto-signmoid
01/31 - CT - Clean, few sub centimeter Liver legions
02/05 - Ultrasound Liver - Indeterminate.
02/12 - PET Scan Clean. Liver legions may be below resolution
02/12 - MRI Liver with Eovist - Liver Indeterminate
02/20 - MRI ABD / Pelvis contrast - Liver lesions favored to hemangiomas.
02/25 - Colon Resection Surgery
03/10 - Surgery Pathology report - 1/16 lymph node positive. AJCC Pathologic Stage: pT2N1a

JJH
Posts: 249
Joined: Mon Apr 24, 2017 7:26 am

Re: Questions before the Oncologist Visit

Postby JJH » Sun Mar 22, 2020 12:38 am

Questions to ask the doctor
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=60747&p=481109#p481109

http://go.ccalliance.org/treatmentquestions

https://health.usnews.com/conditions/cancer/articles/questions-to-ask-your-oncologist-at-your-first-cancer-appointment

For Stage III, there are basically two main first-line options for adjuvant chemo: FOLFOX, or XELOX/CAPEOX:

Side effects of FOLFOX regimen
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=44542&p=321388#p321388

Side effects of XELOX (CAPEOX) regimen
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59287&p=469490#p469490

If this is staged as Stage IV because of the liver, the preferred option might be FOLFOX+Avastin:

Side effects of FOLFOX + Avastin regimen
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=46562&p=341558#p341558

Indigo
Posts: 4
Joined: Sat Mar 21, 2020 9:33 pm

Re: Questions before the Oncologist Visit

Postby Indigo » Sun Mar 22, 2020 2:03 pm

Thank you for the links, these have great experiences and information. I'll revisit them after I have more information from my Oncologist.

Thank you..
2020
01/27 - Colonoscopy, Age 43
01/31 - Colonoscopy Report - Moderately differentiated, recto-signmoid
01/31 - CT - Clean, few sub centimeter Liver legions
02/05 - Ultrasound Liver - Indeterminate.
02/12 - PET Scan Clean. Liver legions may be below resolution
02/12 - MRI Liver with Eovist - Liver Indeterminate
02/20 - MRI ABD / Pelvis contrast - Liver lesions favored to hemangiomas.
02/25 - Colon Resection Surgery
03/10 - Surgery Pathology report - 1/16 lymph node positive. AJCC Pathologic Stage: pT2N1a

JJH
Posts: 249
Joined: Mon Apr 24, 2017 7:26 am

Re: Questions before the Oncologist Visit

Postby JJH » Mon Mar 23, 2020 5:47 am

Indigo wrote:Thank you for the links, these have great experiences and information. I'll revisit them after I have more information from my Oncologist. Thank you..

You're welcome; I have some additional questions and recommendations for your upcoming visit with the oncologist, however:

Questions:

- When is your visit with the oncologist?

- Is this your first visit with her? If so, have you checked on her qualifications/experience and whether she is highly qualified to manage your type of cancer (colorectal)?

- Do you have the information on your MSI (micro satellite instability) status? This is necessary for deciding between the different first-line protocols available for adjuvant chemotherapy. (In the U.S., since January 1, 2018 this biomarker has been required of all patients, of all stages, who have been diagnosed with CRC). It is essential for making a correct initial chemotherapy decision.

Recommendations:

- Be active and not passive in your meeting with the oncologist. Do not just sit and listen passively, since you might just be given a standard "one-size-fits-all" chemo overview that's not really focused on what will be best for you in terms of adjuvant therapy. You need to be prepared to ask intelligent questions to clarify anything that is unclear or ambiguous.

- Be prepared with a prioritized list of questions to insure that at least your most important concerns are addressed by the end of the meeting.

- Take notes during the meeting, or bring along a friend who will take notes for you so that you have a good written record of what was said, including any technical jargon that was given. Or, ask permission to have the conversation recorded on your smartphone, if you have one. There are apps available for doing this, e.g., https://www.medcorder.com

- If your oncologist is recommending only one regimen without giving you a choice, then ask why this one is the preferred one and why the other ones are not preferred. If your oncologist gives you a choice between several options, be sure to ask about all of the advantages and disadvantages of each of the options that you have been given.

- Tell us what happened at the meeting, since there may be people on this board who can provide additional information that will help in your decision making process. Do not sign an "Informed Consent For Treatment" until you are sure that you have evaluated all the relevant information available.

Indigo
Posts: 4
Joined: Sat Mar 21, 2020 9:33 pm

Re: Questions before the Oncologist Visit

Postby Indigo » Mon Mar 23, 2020 5:44 pm

Hi,

- My oncologist appointment is on March 26th Thursday and it will be a video consultation due to COVID.
- Yes, this will be my first visit with her. I am seeing Dr Katherine Van Loon, @UCSF. She is a gastrointestinal oncologist and around 9 years of Oncology experience. My colorectal surgeon setup this appointment and i didn't choose the oncologist.
- I see the following in the pathology report after my surgery : (this pathology report do not have any mention on Micro satellite Instability)
MLH1 expression: Present.
PMS2 expression: Present.
MSH2 expression: Present.
MSH6 expression: Present.

But, in pathology report after my colonoscopy, I see the following in my pathology report :
MLH-1 - Intact nuclear expression
MSH-2 - Intact nuclear expression
MSH-6 - Intact nuclear expression
PMS-2 - Intact nuclear expression
Interpretation - No loss of nuclear expression of MMR Proteins. low probability of micro satellite instability - high (MSI-H)

Are the above results a better prognosis or worse ?

- Thank you for the recommendations. I'll prepare my list of questions.


Thanks
2020
01/27 - Colonoscopy, Age 43
01/31 - Colonoscopy Report - Moderately differentiated, recto-signmoid
01/31 - CT - Clean, few sub centimeter Liver legions
02/05 - Ultrasound Liver - Indeterminate.
02/12 - PET Scan Clean. Liver legions may be below resolution
02/12 - MRI Liver with Eovist - Liver Indeterminate
02/20 - MRI ABD / Pelvis contrast - Liver lesions favored to hemangiomas.
02/25 - Colon Resection Surgery
03/10 - Surgery Pathology report - 1/16 lymph node positive. AJCC Pathologic Stage: pT2N1a

JJH
Posts: 249
Joined: Mon Apr 24, 2017 7:26 am

Re: Questions before the Oncologist Visit

Postby JJH » Tue Mar 24, 2020 11:12 am

  • Your doctor
    Your doctor is a Board Certified Medical Oncologist (2012) with very good credentials, including a number of co-authored articles in professional journals. I think you can be confident that she will do an excellent job in designing an appropriate adjuvant therapy treatment plan for you.

    https://www.abim.org/verify-physician/Van-Loon-Katherine-ZTgA5E6gJh4=.aspx

    https://www.ucsfhealth.org/providers/dr-katherine-van-loon

    https://profiles.ucsf.edu/katherine.vanloon

    Publications
    .
  • Your hospital
    Your hospital is rated #1 in San Francisco, #2 in California and #12 nationwide for cancer, with excellent ratings throughout. In addition, it is one of the two Northern California hospitals recommended by our current Colon Club president.

    https://health.usnews.com/best-hospitals/area/ca/ucsf-medical-center-6930043#overview

    https://health.usnews.com/best-hospitals/area/ca/ucsf-medical-center-6930043/cancer

    https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=14715&p=114254#p114254
    .
  • Your MSI Status
    From the information you have given, your MSI status is MSS (Microsatellite Stable), otherwise known as pMMR (Proficient MisMatch Repair). This means that you are in the 85% of colorectal cancer patients for whom any of the first-line adjuvant therapy regimens can be used effectively.

    To know more about your prognosis, you would probably need to have the information on the KRAS/BRAF/NRAS mutation status for your tumor (i.e., KRAS mutant vs. KRAS wild, etc). See CCAlliance article below for more details:

    https://www.ccalliance.org/colorectal-cancer-information/biomarkers/biomarkers-101

    https://www.curetoday.com/articles/how-microsatellite-instability-works-in-colorectal-cancer

    Since your tumor is classified as MSS, the immunotherapy options available to you on clinical trials -- should you ever need them -- can be found by using the MSS Trial Finder tool below. Right now, however, your will be doing classical adjuvant therapy, which most likely does not involve targeted therapy regimens or clinical trials.

    http://trialfinder.fightcrc.org/

    In the past, as well as the present, UCSF has hosted a number of clinical trials for MSS patients, for example:
    https://clinicaltrials.ucsf.edu/trial/NCT03396926
    .
  • Your Adjuvant Therapy Regimen
    As mentioned earlier, your most likely options for adjuvant therapy are six months of FOLFOX or six months of XELOX(CAPEOX). These two are considered more-or-less equivalent in terms of survival benefit. However, they are not necessarily equivalent on other dimensions, such as range and severity of side effects, etc.

    One way they are different is in the number of trips required to visit the infusion center. FOLFOX is given on a two-week cycle, so there are 12 two-week cycles in 6 months and hence 12 required trips to the infusion center to receive the 5-FU+Oxaliplatin infusions. In addition, there may be other required trips to disconnect the pump on each cycle. In contrast, XELOX(CAPEOX) is given in 3-week cycles, so there are only 8 required trips to the infusion center in the course of six months to receive the oxaliplatin infusions. This is just one of many differences between the two regimens.

    Before Thursday, you should study these two regimens as throughly as possible so that you understand the differences between them in case you are given a choice between the two.
    .
  • Your prognosis
    For your prognosis as a Stage III-A patient, you should talk to your oncologist. She would be the best source of information for that sort of thing.

    On the average, five-year survival rates for Stage III patients as a whole can range anywhere from 55% to 80% or higher, depending on the source of data cited and many, many, many other factors. Probably all you need to remember at this point in time is that your odds are much better than 50/50 for five-year survival. That's all that matters right now. Instead of anguishing over what the percentages might mean, it is probably better to spend your mental energy concentrating on selecting the best chemo regimen possible and on managing the expected side effects as well as possible so that you can finish the six-month adjuvant therapy in good standing.
    .
  • Your video appointment
    I assume that you will be doing your video appointment using the UCSF VideoVisit system. If so, then you should spend time today setting up and testing the system so that you are sure it will work for you on Thursday.

    https://videovisit.ucsf.edu/

    You could also contact the VideoVIsit service to ask how you can save the transcript of your video session, and you should also test this feature in advance so that you are sure it will work.
    https://support.zoom.us/hc/en-us/articles/115004792763-Saving-In-Meeting-Chat


JJH
Posts: 249
Joined: Mon Apr 24, 2017 7:26 am

Re: Questions before the Oncologist Visit

Postby JJH » Thu Mar 26, 2020 2:30 am

Good luck on your video appointment today. When you get a chance, let us know what the oncologist had to say.

Indigo
Posts: 4
Joined: Sat Mar 21, 2020 9:33 pm

Re: Questions before the Oncologist Visit

Postby Indigo » Thu Mar 26, 2020 10:25 pm

Thank you for your information,

I had a video consultation with the Oncologist today. She suggested to undergo 3 months of FOLFOX (5FU + Oxipalatin), every 2 weeks.
She indicated that this treatment, done within 8 weeks of surgery, seems to have helped decrease the chance of recurrence in few percentage of patients and can target any microscopic cancer cells that may have been left in the body after surgery.
I need to get a port on the chest through which the infusion will happen and then there will a pump that i need to keep for 48 hours and disconnect myself.
Doctor recommended to undergo this treatment despite the corona virus threats. I need to take extra precautions at home and during my visit to hospital.
Regarding side effects, she mentioned that fatigue, nausea, hair thinning and cold sensitivity in hands & feet are very real but those may not last for long.
She also mentioned that chronic neuropathy is more likely with longer treatment options than with 3 months.
She mentioned that further testing for KRAS, NRAS, BRAF and HER2 is done in case on stage 4 tumors and may not be required for me at this point.
I plan to start this treatment on some Friday and then see how it goes on Saturday and Sunday and then decide if i can go back to work on a Monday.
I have currently lost around 10kg since my diagnosis so that another thing I was concerned. She will monitor my weight from now until the infusion start, to determine if the weight remains stable and if the treatment can proceed as planned.
I always have an option to send them question through their MyChart system, so if would be great help if there is something I need to ask specifically about this plan ?
Could you please advise,
Thank you,
2020
01/27 - Colonoscopy, Age 43
01/31 - Colonoscopy Report - Moderately differentiated, recto-signmoid
01/31 - CT - Clean, few sub centimeter Liver legions
02/05 - Ultrasound Liver - Indeterminate.
02/12 - PET Scan Clean. Liver legions may be below resolution
02/12 - MRI Liver with Eovist - Liver Indeterminate
02/20 - MRI ABD / Pelvis contrast - Liver lesions favored to hemangiomas.
02/25 - Colon Resection Surgery
03/10 - Surgery Pathology report - 1/16 lymph node positive. AJCC Pathologic Stage: pT2N1a

JJH
Posts: 249
Joined: Mon Apr 24, 2017 7:26 am

Re: Questions before the Oncologist Visit

Postby JJH » Sat Mar 28, 2020 7:58 am

Indigo wrote:... I always have an option to send them question through their MyChart system, so if would be great help if there is something I need to ask specifically about this plan ?
Could you please advise, Thank you,

In the last section below I will suggest some questions you could send through the MyChart system. Meanwhile, here are some comments on your video meeting.

  1. FOLFOX (3-month) Regimen
    This regimen appears to be a very reasonable one, given your Stage IIIA status and the findings reported in the 2017 ASCO post here: https://ascopost.com/News/55708

    This 3-month regimen is consistent with the recommendations of the IDEA collaboration (International Duration Evaluation of Adjuvant therapy) and is considered by many to be the "New Risk-Based Standard to Personalize Chemotherapy for Colon Cancer After Surgery"

    In addition, your doctor has studied this area extensively and has co-authored an article reviewing current Adjuvant Therapy standards in view of recommending improvements:
    https://journals.lww.com/co-oncology/Fulltext/2011/07000/Adjuvant_treatment_of_colon_cancer__what_is_next_.16.aspx
    .
  2. FOLFOX user experiences
    Since you will be on a FOLFOX regimen, not a CAPEOX regimen, I think it is important to get your input from patients who have actually experienced this particular regimen. (I did not do FOLFOX; I did CAPEOX for 3 months instead, so my personal views on FOLFOX are only second-hand and not the result of any personal experience.)

    One way to get feedback from actual FOLFOX patients is to read some of the reports or journals that are on the Internet, for example:

    FOLFOX chemotherapy; a patient's guide, by S. Friedl
    http://unixwiz.net/techtips/folfox6.html

    FOLFOX Treatment Diaries on ColonTalk
    http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=55011&p=435961#p435961
    http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59205&p=468320#p468320

    Another way would be to contact members of this forum who have had FOLFOX experience in the past and who are still active here. There are many in this category:

    Contacting ColonTalk members with FOLFOX experience

    These three are just a subset of the many here who have done FOLFOX and who have logged in in the past week or so. When you are promoted to Regular User status you will be able to send private messages (PMs) to FOLFOX members here who might be able to answer some of your more specific questions.
    .
  3. Type of port to be installed?
    You mentioned that you will have a port installed. There are several different types of ports. You should learn about the differences and learn which one you will be having installed. There are some members here who recommend a Power Port. Here is a page from MSKCC website on ports: https://www.mskcc.org/cancer-care/patient-education/your-implanted-port
    .
  4. Type of pump to be used?
    There are various kinds of pumps available. Some are noisy; some are quiet. Some run on internal batteries, some do not. Some are bulky; some are slim and discreet. You need to find out which one you will be given. Here is an example of a pump used at MSKCC:
    https://www.mskcc.org/cancer-care/patient-education/disconnecting-cadd-pump
    .
  5. Pre-surgery CEA / Post-surgery CEA
    You need to include both your pre-surgery CEA and your post-surgery CEA value in your signature for baseline purposes.
    .
  6. PNI and LVI: Are Perineural Invasion (PNI) or Lymphovascular Invasion (LVI) mentioned in the pathology report?
    .
  7. Margins: Are the proximal, distal and circumferential margins mentioned in the pathology report?
    .
  8. Weight monitoring
    You can keep track of your weight by using a BMI calculator. This will tell you if you are getting dangerously out of range in terms of weight.
    https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=48921&p=372280#p372280
    .
  9. Working while on chemo
    There are a number of things you need to consider if you are thinking about working while on chemo.

    Working During Cancer Treatment
    https://www.cancer.org/treatment/finding-and-paying-for-treatment/understanding-financial-and-legal-matters/working-during-and-after-treatment/working-during-cancer-treatment.html
    .
  10. Some possible questions to ask via the MyChart system
    • How many Stage IIIA patients have you treated in the past with this 3-month protocol, and how well did they do?
      .
    • How often do I have to have blood tests, and does this involve extra trips to the hospital?
      .
    • Do I have an option to chose the type of port to install? If so, what are the different possibilities? Can I choose a better one if I am willing to pay the extra price?
      .
    • How long will it take for the port surgery to heal?
      .
    • Which pump model will I be using? When will I receive an instruction manual for the pump and when will I have hands-on training on how to use it? How will I be judged competent to disconnect the pump on my own?
      .
    • How long will the chemo orientation session take? Do I need to bring a lunch if it goes on too long?
      .
    • Can I take a shower with the pump on?
      .
    • What if I roll over in my sleep and damage the port or the pump connection? What then?
      .
    • What do I do if I have problems with the pump after business hours or on the week-end when the infusion center is closed?
      .
    • Will there be any experienced infusion center staff available or on call during Easter week-end?
      .
    • Should I consider getting a second opinion on my liver scan results with a UCSF liver (hepato-biliary) specialist, given that the original pathologist expressed some concern about the scans?
      .
    • Is this 3-month FOLFOX protocol strong enough to handle possible emerging micro-metastases in my liver given the compromised state that my liver is in?
      .
    • When and how often will I have scans?
      .
    • What if a scan shows a met? Do I have to change to a different chemo regimen then?
      .
    • Should I meet with an oncology dietician to discuss optimal diet while on chemo? Should I be taking supplements to boost my immune system?
      .
    • Should I be tested for DPD deficiency before the start of chemo?
      .
    • How do they monitor for possible anaphylactic shock on the very first infusion? What if I am very allergic to this kind of chemo?
      .
    • Will I have an option to run the oxaliplatin infusion at a slower rate in order to reduce short-term toxicity?
      .
    • If oxaliplatin is dose-reduced or dropped completely before the end of treatment, will this chemo still be effective?
      .
    • Do I need a doctor's letter of authorization to travel to the infusion center during COVID confinement?
      .
    • What items can I bring into the infusion center? Laptop? Books? Snacks?
      .
    • Does the infusion center have WiFi?
      .
    • Can I bring a friend with me?
      .
    • Can I do the infusion in street clothes, or do I have to change into a hospital gown?
      .
    • Will patients with flu symptoms or high temperature be allowed in the infusion room? Is the infusion equipment disinfected after each patient?
      .
    • Should I wear a mask and gloves when I go to the infusion center?
      .
    • What if I need to go to the toilet when I am all encumbered with IV tubes and other infusion equipment?
      .
    • What do I do if my cat doesn't like the smell of my chemo and doesn't want to see me any more? ...


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