Tumours shrinking....now what?

[VC2014]

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~

[CF_69]

What city is your sister being treated in?

I’m in Ottawa.

The part about no chemo for stage 2 is alarming.

[Maggie Nell]

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...

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. ...

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.

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.....

Those of us who have been caregivers are familiar with the saying you can lead a horse to water but you can't make it drink.

Your sister has made her strategy quite clear to her health team of oncologists etc. and reading the experiences of others who are
more vigorous in doing everything to increase their survival, to reach NED could be adding to your frustration and struggles with how your
sister is dealing with her devastating diagnosis. She is the one who is living inside in her own skin and perhaps she has had enough of
whatever hand life has dealt her over 50 years.

Take care of your emotional health as seems to me your sister is content with her choice. Are there other siblings and close family, spouses,
children or is this sister your only family?

[VC2014]

What city is your sister being treated in?

I’m in Ottawa.

The part about no chemo for stage 2 is alarming.

She is being treated in Winnipeg, I live in Vancouver.
The no chemo for stage 2 was alarming to me too, but seems to be standard protocol.

[VC2014]

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...

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. ...

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.

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.....

Those of us who have been caregivers are familiar with the saying you can lead a horse to water but you can't make it drink.

Your sister has made her strategy quite clear to her health team of oncologists etc. and reading the experiences of others who are
more vigorous in doing everything to increase their survival, to reach NED could be adding to your frustration and struggles with how your
sister is dealing with her devastating diagnosis. She is the one who is living inside in her own skin and perhaps she has had enough of
whatever hand life has dealt her over 50 years.

Take care of your emotional health as seems to me your sister is content with her choice. Are there other siblings and close family, spouses,
children or is this sister your only family?

You couldn’t be more accurate on the leading the horse to water!

I know with certainty my sister isn’t accepting of a potential dire outcome on this and it feels like it’s just outright ignorance and fear. She accidentally came across the 10% at 5 year survival rates a few weeks ago the one time she was looking up the steroid meds, and she really freaked out. She talks that her goal is to make it at least 15 years....a date past how long my aunt lived. She repeats the mantra “I will be fine” over and over when stressed. She has cried to me saying “ I don’t want to die”.

I’m married with three kids and I’m used to being proactive health wise- we all get our vaccinations, flu shots annually, I stay up to date on mammogram and pap screenings. As everything was unfolding this last year I was horrified at how neglectful she could be with her health. She was initially having hot flashes, the doctor asked if she was (I researched to find it can be a tumour burden indicator) but she said no, self attributing it to early menopause. In pressing her it turns out she hadn’t even been for a pap in several years....and never has had a mammogram. We were taking a short trip between chemo sessions and the area had been indicated as increased for flu cases. Turns out she never went for a flu shot.....the doctors mentioned it, told her it has to be done during a certain window within the chemo session but because they didn’t actually administer it to her she didn’t do it on her own. She keep getting mouth irritation for a cracked tooth she has.....it was cracked before the cancer started and never fixed it then despite having full dental coverage....just didn’t get around to it she says. There’s just no excuse for this neglect in my eyes. She is doing nothing that I can see to be proactive in any regard, yet cries she doesn’t want the disease to take her.

She is my only sister and sibling, and our elderly parents both still live in town with her. She’s married with no kids. I often see the spouse taking the advocate role, but he seems worse than her mentally...at times in total denial. We are super close as sisters, we travel several times a year together and talk most days. I’m feeling awful....torn between giving tough love to wake her up to fight this or shut up and not rock the boat understanding the consequences that could result from that. I know even with advocating we won’t always get the outcome we want, but still, I want to know every road was explored!

[Beckster]

What city is your sister being treated in?

I’m in Ottawa.

The part about no chemo for stage 2 is alarming.

She is being treated in Winnipeg, I live in Vancouver.
The no chemo for stage 2 was alarming to me too, but seems to be standard protocol.

As a Stage II ..... we all know that it is a grey area. I can not believe that Canada is so different than the US in treatment plans. An orange size mass is approx 7.5-8cm in size. My mass was 3.5 and I had to go through 6 months of chemo, but I can still have a recurrence. I did have a choice, but decided that it is better safe than sorry; however, my husband did not want me to agree to chemo. He thought that 80% was great, but it was my body and I had to do what I thought was right for me.

[VC2014]

What city is your sister being treated in?

I’m in Ottawa.

The part about no chemo for stage 2 is alarming.

She is being treated in Winnipeg, I live in Vancouver.
The no chemo for stage 2 was alarming to me too, but seems to be standard protocol.

As a Stage II ..... we all know that it is a grey area. I can not believe that Canada is so different than the US in treatment plans. An orange size mass is approx 7.5-8cm in size. My mass was 3.5 and I had to go through 6 months of chemo, but I can still have a recurrence. I did have a choice, but decided that it is better safe than sorry; however, my husband did not want me to agree to chemo. He thought that 80% was great, but it was my body and I had to do what I thought was right for me.

Congrats on clear scans since 2017!

I’m not even sure if it’s so much the Canadian system as it is the egotistical doctor surgeon she was paired with from the night at the ER from the appendix rupture who likely figured he could handle this without a team. He’s a GI surgeon. First red flag was when they saw the thickening of the walls, but put zero urgency on getting the colonoscopy done....she waited 4 months despite being in emergency for 10 days- they had ample opportunity to investigate when there was suspicion.

After her right hemi she shared a room with others in similar circumstances. The guy across from her was discharged a couple days earlier and we watched the discharge staff outline his appointments including that from cancer care. She was never set up intitially and cancer care was confused why they hadn’t met with her until 5 mos post diagnosis, the surgeon apparently never sent referral. He had never at any point done a chest X-ray, and I had told her that was pretty standard and to ask since liver and lungs often involved. I kept asking her to follow up and she just kept saying she’s low priority, no chemo, no urgency.

She clearly has had lapses in medical care, but she is LETTING it happen unwilling to investigate and push. She takes comfort that if there is no urgency to her case, then she is not in crisis....and I don’t think that’s at all the case.

Ugh, as I type all this it’s really resonating that I’m not likely going to sway her much as I recall the various situations.

[Dionca]

I was pretty alarmed to hear that chemo was not offered for Stage 2 in Canada, so I checked up on this. However, the Standard of Care seems to be the same as in the US. While most Stage 2s don't get chemo, those with a high risk of recurrence, will get it.
High risk is determined by:
- The tumour is T4
- Less than 12 lymph nodes were removed
- The tumour has grown into nearby lymph nodes or blood vessels
- The tumour is high grade or poorly differentiated
- There was a bowel obstruction or perforation
- Not enough healthy tissue was removed, or positive surgical margins

http://www.cancer.ca/en/cancer-informat ... ?region=on

[Maggie Nell]

In pressing her it turns out she hadn’t even been for a pap in several years....and never has had a mammogram. ....
. There’s just no excuse for this neglect in my eyes.

She is doing nothing that I can see to be proactive in any regard, yet cries she doesn’t want the disease to take her.

Would there be a support network in Winnipeg that can come alongside your sister and husband who are linked in to
the hospital/oncology clinic. (I'm in Australia and going on what is accessible in terms of peer support here)

From my professional experience in allied health care and working with women who have gone through adverse
experiences and been assaulted, I can see how routine mammograms and Pap smears etc become hot potato
issues.

As your sister still lives in the same town with your elderly parents, is she in a caregiving role to them? I'm just thinking
of one or two people in this forum who were caregivers to elderly parent/parents and had concerns about aggressive
treatments incapacitating them and their elders having to transition into facilities. There are a few variables here
that could be factors.

Things are never what they seem.

[boxhill]

I have total sympathy for your situation and your frustration, but frankly I doubt that there is anything that you can realistically do about it.

Your sister has made up her mind, she has conveyed this to her doctors, and they are following her lead. If that results in her treatment being insufficiently aggressive to achieve the best ultimate result, well, that is what she has chosen.

It would drive me mad. My own sister has tendencies in that direction, and is secretive about any and all health issues even when it would benefit her sibling and children to know about them. She had CRC, the tumor was "early stage"--she doesn't know what--she declined to see an oncologist, she knows nothing about her tumor genetics, but at least she has followup scans and was thoroughly scanned, including her chest, at the time, so we can be pretty certain that her course of treatment was appropriate. While she was suffering from the blockage, she at first refused to see a doctor, then got advice on what to do about nausea from an MD friend to whom she did not reveal such pertinent facts as that she has T2 diabetes--something that she had kept secret from all of us!--and so almost killed herself drinking sugar-laden gatorade and trying to eat jello. When she eventually asked to be taken to the hospital, they had to start by giving her insulin and stabilizing her overnight before they could do the surgery. ARGH!! This was particularly maddening because I had been diagnosed with T2 3 years earlier, and had promptly told her about it and suggested that she should tell her PCP and keep an eye out because there was a genetic component. Her response was "I feel perfectly healthy!" I said so had I, but to no avail. But enough about my family....

If your sister were hesitant because she was afraid no one would be able to care for your parents, there might be some chance of reassuring her on that front. But it doesn't sound to me as if she is driven by concerns as rational as that.

I can only send you my sympathy and my best wishes.

[Maggie Nell]

In the immortal words of Kenny Rogers.....

You've got to know when to hold 'em
Know when to fold 'em
Know when to walk away
And know when to run…

Having clear boundaries for your own mental health and physical wellbeing becomes essential as
the frustration can accumulate and drag you down.

[Stewsbetty]

Hello,

Fellow Canadian here. I feel for you in this situation. I am a bit of a researcher myself and have been advocating for things that I feel are important. However, I also have a very concerned sister who is sometimes pushing me to do things I am not comfortable with. She came to visit while I was in treatment and would come to my appointments with me. I allowed her to ask questions and push a bit for things she thought were important. I think it did help as the drs knew that we were looking for answers and proactive care. Is there a chance you could visit and maybe attend some appointments with her? I personally don’t think knowing death stats are important and try to avoid that type of info but I sure do like to stay current on treatments, testing and the like.

You didn’t mention if your sister received MSI testing or not. I know that it isn’t always standard in Canada (I had to ask for it). I turned out to be MSI h and after failing 2 chemos was able to get immunotherapy off label. It is working for me. Just thought I would encourage her/you to ask for it.

Regarding surgery: with my recurrence (1 involved distant lymph node) I saw a surgeon and he did tell me statistically removing it doesn’t improve odds. I felt like this was his way of telling me that he could remove it but that wouldn’t mean there wasn’t more cancer in my body that would just pop or that if we left it it might be the only node and grow super slowly. Anyway, it grew super rapidly and spread like wildfire so we didn’t even have a chance to remove it.
It does seem like here in Canada they are less likely to want to open people up for a second time.

Feel free to PM me anytime.
Beth