How to handle 3 conflicting pathology reports?
Hello all,
I am 54. Diagnosed with p53abn, POLE negative, pMMR, ER/PR positive endometrioid adenocarcinoma after hysterectomy in January. Since then, we have been waiting on genomic testing and a third path report (the first 2, from a local hospital and then Stanford). Genomic testing indicates LOH, PikC3a positive, loss of PTEN.
The path reports disagree on grade (either 2 or 3) and myoinvasion (none, minimal, none, but tumor involvement of leiomyoma. As the presence of myoinvasion seems to be the ESGO... criteria for suggesting adjuvant therapy or not, I'm not sure where to go from here. Any advice is appreciated.
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What to do next depends on your preferences. I can only share what my preferences would be in a similar situation—my preferences as a patient, not as a doctor. My preferences would be to presume the worst test results are the most accurate and treat as aggressively as possible. Assume the worst, hope for the best.
Ask your friends and family what they would do in this situation. Ask your doctors.
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4 ReactionsI came here to suggest you assume the worst case scenario when I saw that lathomasmd already done so. I was in a similar situation. After surgery, I was told by UCI that my cancer was only in my uterine lining, then told by UCLA that they found no cancer at all (I was shocked but thrilled), then told by MSK that not only did I have cancer but it had spread beyond the lining into my myometrium (increasing the probability of recurrence). This happened over several weeks so I was just mentally exhausted! Didn't know what to think. Then it all started over again! One said no chemo, the other said chemo, and third said it doesn't matter because it's too late. It was torture! After months of overthinking it all, I just decided to assume the worst case scenario. I have serous endometrial intraepithelial carcinoma (very aggressive). Athough it's too late for chemo, I'm extreme in watching for signs of recurrence.
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4 Reactions@delizzr Welcome to Mayo Clinic Connect and to our sisters in the Gynecological Cancers Support Group.
While I am a volunteer mentor on Mayo Clinic Connect I want to let you know that none of us are medical providers and so cannot provide you with medical advice. We are here to support one another and offer our own experiences.
Your initial post contains considerable medical information contained within your pathology reports that we cannot interpret for you. In addition, you've used many acronyms that I'm not familiar with as I'm not a medical provider.
I will share that I was diagnosed with endometroid adenocarcinoma in 2019. The initial pathology report from my local hospital was Grade 2. When I was referred to Mayo Clinic my slides were sent to Mayo for their pathologists to examine. The Mayo pathologist diagnosed Grade 1. I had a radical hysterectomy and the pathology report after surgery indicated Stage 1a. This was almost 7 years ago so I did not have the genetic testing that you indicate here.
What does your gyn-oncologist recommend? Would you like to get another opinion from a second oncologist who can read the 3 pathology reports you referenced here? If this were me and I was confused by these results that's what I would do.
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4 ReactionsThank you, everyone. Even in my care team so far I'm getting conflicting information and recommendations (ranging from observation, to brachy to chemo with external beam. I'm considering self referring to Mayo or MSK but just have this feeling (med ptsd) that they would decline to accept. Beyond just the cancer stress, the medical care side has been so frustrating. I'm 9 weeks post surgery and still no clear treatment plan.
If you have gone to a major center, how did you get there.
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1 Reaction@delizzr I went to MSK for a second opinion. I'm on the westcoast and wasn't familiar with the hustle and bustle of the eastcoast, so I sought the simplest solution possible. I stayed at a hotel that shared space with the MSK doctor's office, so all of my appointments were just an elevator ride away. I got there by flying from Los Angeles to New York. You can hire the hotel's personal SUV driver to pick you up from the airport and take you to the hotel. My appointments at MSK were more convenient than my appointments here at home.
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1 Reaction@inquirer Thank you! I'm thinking of trying to get a referral to Mayo because I have other complex conditions. I appreciate you taking the time to share.
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1 ReactionWhether or not you need a referral depends on what kind of health insurance you have. I self-referred to Mayo for a second opinion while I was still working and had employer-sponsored insurance. Mayo took that insurance, fortunately. Now I’m on Medicare, with a plan G supplement. Mayo takes Medicare with a traditional supplement, but they do NOT take Medicare Advantage. Call or email all the places you’re thinking of going and see if you can speak to a patient advocate who can help you navigate the ins and outs of insurance.
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1 Reaction@delizzr, if you would like to get a second opinion at Mayo Clinic, you can submit a request here: https://mayocl.in/1mtmR63
You might find this blog post by the Mayo Cancer Education center helpful:
- Tips for seeking a second opinion https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/tips-for-seeking-a-second-opinion/
How are you doing?
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2 Reactions@lathomasmd I know some people who have Medicare Advantage Plans and they get their care at Mayo Clinic in Rochester, MN. This is because Mayo Clinic is "in-network" with their respective Medicare Advantage Plans. So, for anyone who is considering Mayo Clinic and have Medicare Advantage they should call the relevant Mayo Clinic (Arizona, Florida, or Minnesota) as each are different in which insurances are accepted because of the state where the clinic is located.
What insurance does Mayo Clinic accept:
-- https://www.mayoclinic.org/billing-insurance/insurance/faq
@inquirer
I’m not understanding your remark “too late for chemo”…..