Hi everyone, apologies in advance for long post!
I've been lurking the boards for over a year now, let me start off by thanking everyone for sharing their experiences, it has been my go-to for information as well as inspiration for maintaining hope. Can't express my gratitude enough for this!
My sister at age 49 was diagnosed with colon cancer in 2017, here's the background story:
After intermittent severe abdominal pain she was finally admitted to the ER in August 2017 with a ruptured appendix that was severely infected. They said no surgery due to the infection so stayed 10 days on IV antibiotics to clear. The surgeon said he didn't want any "surprises" for the eventual appendix surgery noting there was thickening of the walls during the scans. They didn't schedule the colonoscopy until December 2017, at that time they confirmed cancer from a biopsy of the area, and scheduled her for surgery later that month. Despite not being able to see anything on two CT scans, they ended up doing a right hemi-colonectomy removing a mass the size of an orange. In January we got the pathology back- Cancer of the Cecum, Invasive adenocarcinoma with mucinous features, moderately differentiated. 20 lymph nodes removed, all negative for malignancy, pT3N0. This put her at stage 2. In Canada they don't give chemo for stage 2, just monitoring.
She eventually got a call from Cancer care to start the base line tests for monitoring in May 2018. Her CT scan came back and she had a node on her right lung measuring 11 mm. A later PET scan revealed it as active, as was her initial surgical site. The pathology that came back on lung node and found it was metastic cancer from the colon. Pathology indicated- moderately differentiated adenocarcinoma, focal pleural invasion seen. Areas suspicious for lymphovascular invasion. When it was removed in August it measured 15 mm X 10 mm. They would start chemo now being stage 4....that would begin in October 2018.
In October 2018 they did CT scans prior to starting chemo, and ordered up a colonoscopy given the initial surgical site had lit up on the PET scan. Results came back- and now she has 2 new nodes on her left lung and "lymph node involvement". They cancelled the colonoscopy and decided to simply proceed with chemo. They said they weren't expecting to see this and ordered up some tests based on the recurrence, they confirmed KRAS (not wild type). She completed 2 rounds FOLFOX then switched to FOLFORI after struggling with the side effects from FOLFOX.
After 8 total rounds, they did another CT scan which has shown the new lung nodes as shrinking- YAY- first good news we have had yet! One that was 10 mm shrunk to 3 mm, the other was 11 mm shrunk to 6. "lymph nodes smaller but one in pelvis still enlarged" she said. After confirming KRAS they added Avastin. She was gaining a substantial amount of weight so by round 9 they took the steroids out. They said there may be surgery down the road in future, but for now she will be on chemo longer than the expected 12 rounds. I do not have any idea as to the extent of what "lymph node involvement" is, nor does my sister. They plan to scan again after 12 rounds, which is next month.
Here's my issues and concerns-
My sister has been extremely scared and emotionally has struggled, the way she deals with it is "she doesn't want to know" and has told the oncologists that she doesn't want to know survival rates etc, she doesn't research anything so she won't see anything bad. She feels thats best to stay positive in this journey. I totally respect she has to get through this whatever way she can mentally- but it makes it near impossible to advocate for herself. I live in another city, I research for hours as I'm an information seeker and figure knowledge is key in advocating for best treatment. The pathology reports after the surgeries were great for that, plus I spoke directly with surgeons at hospital following both operations. Now, she/we only get something verbal from the occasional scan and I'm not sure how edited it may be given she's expressed so much of the "I don't want to know" fear to the doctors. She gets VERY upset when any tests are being done, so she has Ativan to help calm her somewhat when needed.
When I read others experiences at the major cancer centres, they seem to put a plan together (even for stage 4) of how they will attempt to get to NED status, what has to happen to proceed to surgeries etc. Despite having the tumours shrink on chemo, I see them not ordering the colonoscopy to even biopsy the area that lit up on the PET scan. I haven't heard that the nodes on her lung are in an inoperable location, and they are both small enough that they seem surgically viable. I know no one here is a doctor, but, I guess I'm worried they have already decided to treat this only as palliative/maintenance....and I'm struggling with that. I tried to gently bring up with her how others indicate getting a plan from the oncologist and she got very upset saying/crying "They don't know, they haven't seen cancer do what mine is, it's not acting like they expect it to....they don't know" so... I backed off. I know she's referring to when she had the second recurrence, she seems to be able to grow a 10 mm node within 5 months (twice that happened on the lungs- grrrr) and I believe that aggressiveness led them to do the KRAS testing and the comments. But, I don't think THEY don't know how they are approaching her.
Is it possible because there is any lymph node involvement that is why surgery isn't being discussed, and may not be? Should I encourage her to push for that colonoscopy? Thoughts on if I should/shouldn't encourage her to advocate for surgery, or some kind of plan? She is happy with oncologists, and here we can't really seek out second opinions. I feel like I'm floating, not wanting to upset her, but needing desperately for someone to push for the fight to NED. Again, I fully respect that this is a mental challenge as much as a physical one for her to navigate so I don't want to push her someplace she can't handle.
Any thoughts or similar experiences? I was so happy when we first got the news the tumours were shrinking, but now the "no action, just continue chemo" is making me freak out.....
Thanks for any feedback~