KathyLynn wrote:... So after my second opinion, I waited for the oncologist to bring it up at the board
All agreed that I should not have any chemo or radiation
So, I will see my surgeon for all follow up tests.
I cancelled my appointment with John Hopkins. (Third opinion)
I hope I made the right decision
I’ll will keep everyone updated
Congratulations! It's good to hear that everyone on the tumor board agreed to "no chemo, no radiation" for you. This will save you a lot of trouble in the future. Your post-surgery pathology was excellent, apart from the reference to ITCs. But ITC's probably don't have much prognostic value for predicting future recurrences for your type of staging anyway -- at least that's what the scientific literature as a whole seems to suggest.
In my opinion, you made the right decision, given your excellent risk-factor profile.
For now, the main problem will be dealing with the long-term effects of the rectal cancer surgery itself. These symptoms are collectively called LARS -- Low Anterior Resection Syndrome.
Since all of your follow-up tests are to be coordinated by your surgeon from now on, what I would suggest is that you talk to your surgeon not only about monitoring for possible cancer recurrences, but also about how to manage the various issues arising from your current lack of complete rectal "plumbing" anatomy.
Basically, in my opinion, the task at hand for you right now is to focus mainly on these QOL issues, such as fecal incontinence, since it is likely that your main concerns over the next few months will be to re-educate your bowel system to return to normal as soon as possible.
Although your surgeon may not have too many specific suggestions in this regard, he should at least be able to recommend referrals to specialists who know how to diagnose and treat issues like this such as pelvic floor dysfunction, bowel dysfunction, dyssynergia, etc.
So, what I am suggesting is that you should try to work out a comprehensive plan for your 5-year follow-up that includes much more than the standard quarterly blood tests and yearly CT scans for cancer. Since you are a rectal cancer patient, there are all of these LARS-related issues that need to be addressed in a timely fashion, and you need to be put in contact with the right kind of specialists and practitioners who can genuinely help you with whatever issues emerge. In addition you need to have some sort of plan for good diet and physical exercise that you can diligently follow.
NOTE: The type of comprehensive 5-year plan I'm referring to is the one called "SCP- Survivorship Care Plan
" and which is being featured in a special session in the up-coming Call-on-Congress meeting:
Treatment Summaries and Survivorship Care Plans (TS/SCPs): Symptom Management and Surveillance
Andi Dwyer, University of Colorado
Director of Health Promotion, Fight Colorectal Cancer
How are colorectal cancer survivors supposed to manage their medical care after treatment ends? It is recommended by several professional cancer organizations that at completion of treatment, patients receive a summary of what treatments they have had in addition to a detailed plan of ongoing care from their providers. Did you leave with a clear plan?
The truth is, a majority of patients are leaving with more confusion than clarity as it relates to their follow up and management post treatment. In this unique breakout session Andi will facilitate a discussion about the importance of survivorship care planning.
Lively, interactive discussions will cover:
• What is a TS/SCP
• The recommended follow-up care for colorectal cancer survivors
• Responsibilities of different providers (oncologist, primary care, etc.)
• Where to go for resources