Catwoman54 wrote:Anyone gone this route? Watch and wait? If so what was your stage?
What was the treatment order?
And where did you find a team to agree to do it?
Just diagnosed a couple of months ago and getting ready to start treatment. T3 N1 M0
Please see my post below from 8/15/2017. It lists centers in US that offer this treatment, the users here on this forum who have gone that route and my own personal journey. I had my latest scan yesterday and continue to be tumor-free.Fortunately
I have not posted in this forum in a while but I thought it was important to share some updates so that it could be useful for other patients.
My chemoradiation therapy ended on May 22nd 2017. Since June 2017, I have been having normal bowel movements. I had several imaging studies as well as a pathology study done to evaluate the tumor response.
June 26: Blood tests for genetic propensity for colorectal cancer retruns negative results for all 18 genes in the panel. This was initiated by my cancer team at Minnesota Oncology. The blood sample was sent to a lab in California.
June 28, 2017 (5 weeks after completion of chemoradiation): MRI Scan:
Approximately 10% of the mass demonstrated tumour signal intensity, with the remainder appearing to represent fibrosis. This corresponds to a tumour response grade of 2. No suspicious lymphadenopathy.
June 30, 2017: Flexible Sigmoidoscopy with biopsy:
A nodule/bump was all that remained in the place where the tumor used to be. A biopsy of deep tissue from where the tumor used to be revealed no evidence of adenocarcinoma.
August 7, 2017: (10 weeks after completion of chemoradiation): MRI Scan:
Approximately less than 5% of the mass demonstrated tumour signal intensity, with the remainder appearing to represent fibrosis. This corresponds to a tumour response grade of mrTRG-2.
August 9, 2017: (10 weeks after completion of chemoradiation): MRI Scan and PET scans as part of a study at Mayo clinic:
MRI report: No evidence of primary tumor. No evidence of distal metastasis
August 11, 2017: Oncologist at University of Minnesota Masonic Cancer Center calls the above reports an excellent response and places me in Wait and Watch Program if I am interested. I choose the Wait and Watch program after understanding risks and after signing up for an intensive follow up program.
August 17, 2017: Mop-up Chemotherapy to start. IV infusion of Folfox with Oxaliplatin. Every two weeks for approximately 5 months.
USEFUL INFORMATION FOR OTHER PATIENTS
1) Wait Period between completion of neoadjuvant therapy and surgery or evaluation for surgery:
Just by looking at my case, it appears that the chances of a complete tumor erasure are better if we wait longer after the completion of neoadjuvant chemoradiation. Some physicians recommend a waiting period of 4 weeks, some 5 weeks, the landmark Habr-Gama trial kept a waiting period of 8 weeks and some places wait about 10 weeks or more. There are studies going on regarding this. At least in one research paper, I read that the chances of tumor responding to neoadjuvant chemoradiation diminish after 10 to 12 weeks of completion of neoadjuvant chemoradiation. I was evaluated at 5 weeks and also at about 10 to 11 weeks.
2) University of Minnesota Masonic Cancer Center offers Wait and Watch Program for select patients with excellent response to neoadjuvant chemoradiation. There is not much information available online as to which Cancer Centers in the US offer this treatment. It is rare because it is not yet Standard of Care in the United States. It is probably the standard of care for complete responders in the hospital in Sao Paulo, Brazil where this method was pioneered. It is also offered as a choice to patients in the UK who are complete responders (read an online NHS pamphlet about it). In UK, it is called active surveillance. The patient is offered the choice, to either go for radical surgery or be on active surveillance. As far as I know, these are the centers in North America offering Wait and Watch program for patients with "complete response" (no consensus exists on what it is or how to measure complete clinical or pathological response)
- Memorial Sloan Kettering in NY
- Kaiser facility in Sunset Blvd. (CA)- this is where the user prs is having his treatment
- Some hospital in Toronto, Canada- )- this is where the user mozart13 is having his treatment
- Masonic Cancer Center, University of Minnesota, Minneapolis, MN- - this is where the user skb is having his treatment
- University of Rochester Medical Center in Rochester, NY
Memorial Sloan and the Rochester, NY hospital are the only ones in the US that are part of the International Wait and Watch Database
3) It is important to note that Wait and Watch is a risky approach and every patient who is offered this program has to decide what is best for them. I am not advocating one way or the other. Considering my situation, my genetic test results, I decided to take the risk. Rigorous follow up is key. It is important to detect reccurrences early so that there could be emergency salvage surgery. I am just sharing information here for the benefit of other patients
4) Being active, eating healthy seems to improve chances of response to treatment:
While I was waiting after my neoadjuvant chemoradiation, I asked lucky folks like prs and mozart13 whether they ate a special diet or had special exercise regimen that helped them get to complete response. prs used to walk regularly. My oncologist also recommends that. I can't say that I walked every day in the last 3 months for 30 mins. But I tried to lead a normal lifestyle. Went to work, picked up kids, cooked dinner every night for my family, played with my kids when I could make time. I was active. My wife prepared a cocktail juice of carrots, celery and ginger and she made me drink a mug of that daily. We do not know if that helped for sure but carrots and celery can't be bad for you.
I am curious as to how other complete responders like prs, mozart13 and Rikimaroo are doing. Please post if time permits. You are the ones who gave me hope.