Stage 4 Patient doing great, but 1 question

sgold88 · October 2021

Hi All, haven't posted for a while but read everyone's posts frequently. Always thinking about you all here.

My wife was dx'd in Aug 2019 with colon cancer - they removed the tumour in late Aug 2019 and very shortly after (5 weeks) they found two tiny mets in liver. Removed those. She did 12 cycles of chemo that ended in May 2020. She's been NED since and her oncologist believes she is in a great spot and should plan for continued good health and a long life, saying she is in the best possible spot given where her situation was back two years ago. There have been no recurrances since those liver mets and she is living a healthy lifestyle. She has 6 month scan follow-ups and her oncology team feels that she should just go about her life and the fact that it's been 2 years with nothing is a great sign so far. Physically she is good but mentally she has tons of anxiety about it coming back. Very normal I am told.

Anyway, just wanted to hear people's thoughts on the following; ever since Spring 2020 (and possibly earlier, but I don't have the scan reports before that), she has had a small (less than 1.0 cm) spot on her peritoneum. It shows up scan after scan but radiologist says nothing beyond that. Oncologist knows about it obviously, is not concerned at all and doesn't think it's growing or anything to worry about anyway. Basically we aren't concerned about it and have been told not to be concerned about it.

What my question is: could it could be cancerous and we don't know it?

If it grows, can it all of a sudden become cancerous? Her CEA never changed but has always been low, even during the time of her diagnosis. basically her CEA is a non-factor in screening and not relevant since it's always been low. She has been lucky enough to have had a liquid biopsy in March of this year where they scan her blood for any cancer markers or indications, and the results came back clean. The spot in question was in her body at that time and made no impact on the liquid biopsy. If it was cancerous, the idea is that it would have shown up in her liwuid biopy blood analysis.

In her most recent scan, the radiologist thinks it may have grown from 0.8mm to 1.1 cm but according to her oncology team, they sees no change and that it's too small to even see any change and that it's been there for such a long time, that at this point she shouldn't even think about it. We completely trust them. Basically by now, if it was concerning, it would have "declared itself" as cancer by now and she'd have had symptoms or otherwise.

So, I wonder if anyone has had a similar situation and given her scans, liquid biopsies and time passed since this thing has been visible on scan after scan after scan over the last 18+ months, has anyone seen something like this? Am I thinking too much about nothing? Again - we totally trust our oncology team but any spot anywhere is a mindmess for all of us I'm sure.

Wishing you all the best.

Trubrit · October 2021

Dilema

At the end of the day, no matter what anyone says, you are not going to forget this spot, and it will conitnue giving you a 'mindmess' as you say.

It must be terribly frustrating to have the radiaologist say one thing, and the Oncologist to say another. I wonder if you could get a second opion from another radiologist?

I think I would want to know which one was right - and hope it was the Oncologist.

The only experience I have had with scans, is the spot on my liver, which stayed stable throughout chemo and into the first post chemo scan. They were thinking it was a hemangiona, but then on my second post chemo scan, the damn thing had grown and ended up being a met, after all.

I wish your wife the best, and hope that peace comes to you both, in some form.

Tru

sgold88 · October 2021

Tru

Thanks Tru. The unknown is so difficult, indeed. My comfort in this case is that even when she was coming out of her two surgeries (colon and liver) nearly two years ago and then ongoing through the chemo itself, that this spot was aware to the doctors but never a concern. Moreover, the liquid biopsy is fairly thorough that it would have likely (I hope) picked up something cancerous in her system as it's designed to do, like this spot. I guess we try to convince ourselves or lead ourselves to a partocular concolusion to make things feel better. I hope I am not just fooling myself. I just feel a spot that's a spot for nearly a couple years already would have been a problem by now if it is indeed problematic. Thanks again for the reply.

Trubrit · October 2021

You are not a fool

I hope I am not just fooling myself

I do not think that you are 'fooling yourself'. Sometimes, we have to sift out what is our intuition - which I think we have in abundance if we were able to recognise and tap into it, and wishful thinking. Neither of them are bad thing, at the end of the day.

I say you both conitnue with your faith in the Oncologist. The healthy life-style. The positive attitude - which you are mixing up with fooling youself, and enjoy life. The future will take care of itself, and you will take care of the future.

Tru

sgold88 · October 2021

Thanks Tru!

Words to live by in that last paragraph. Sometimes its easy to feel guilty for enjoying oneself after such an ordeal.

beaumontdave · October 2021

I think most folks have '

I think most folks have ''spots'' scattered around and sometimes only time and checking eliminate them as concerns. My experience went both ways. 2 years after the initial colectomy, cysts became liver lesions in the doctor's discussions, but a rising CEA test was guiding the concerns, both times. The thing is, they note lots of things that are added to my report over time, so now I read about nodules in the lungs, minor voids in the liver, a mass on my adrenal gland they call ''incidental''. Things like these show up and are scary when you first hear about them, but they just sit there, and do nothing, and still 14 years later, some NP or the like will mention one thing or another, which has me responding that it's been noted for many years, and ask if they/it are doing anything? No, she'll say, they just wanted to make me aware of it, lol..................................................Dave

sgold88 · November 2021

Update

Thanks Dave. Your posts always provide comfort and perspective. Today we learned the "nodule" grew from 1.3 x 0.7 cm to 1.4 x 1.1 cm over about three months. Haven't spoken to Dr. yet. obviously it could be anything, not necessarily cancer. I suspect it Will be a wait and see approach since growth is slow and the nodule is tiny. hard to stay positive when something is growing inside and given the history.

lhduffer · November 2021

Not quite the same

I had a similar situation but not the same. I was diagnosed stage 4 rectal cancer July 2015. Treatment was chemo, then chemo/radiation, LAR surgery, more chemo and then ileostomy reversal in Sept. 2016. My scan in Dec. 2016 showed a new 8 mm left external iliac node but my CEA was low. They followed up in 3 months with another CT and it was stable. The course of action was that if it is stable, no action would be taken as it would need to be 1 cm for a biopsy. Therefore, they were content that it was not an issue.

Over the course of the years it remained stable but my CEA was slowly rising. They were still not concerned as my CEA was in the "normal" range. I completely trusted them, and still do, throughout my period of follow up. However, on Sept. 1, 2021 (my five year mark) my CEA shot to 19.1 with the CT showing an enlarged appendix and the node slightly larger at 9 mm. They were concerned about appendix cancer but still not really concerned with the lymph node. A PET and colonoscopy were ordered. Both the lymph node and the appendix "lit up" on the PET. A biopsy was then ordered on the node (it is located deep in the pelvis and is a tricky area which is why they don't aggressively take action upon first glance). It came back as a metastatic recurrence of my rectal cancer. So I ended up with a new appendix cancer and a recurrence of my rectal cancer.

I just had my appendix surgery on Nov. 17, 2021 and will be headed with MRI guided radiation for the lymph node.

As others have stated, and per standard protocol, when a spot appears to be stable and there are not other factors indicating a problem, they are not inclined to take aggressive action as it is likely just a "spot". Therefore, it appears they are doing survellience and additional testing as indicated. Since it is slowly growing, maybe they could order a PET?

Keep the faith in your oncologist but also continue to ask questions. As you can see "spots" can be nothing or can be something. Continue to keep the positive thoughts and try not to worry as worry does not change our circumstances but only robs us of our peace. Wishing you only good results.

sgold88 · November 2021

Thanks. Pet ordered

Thanks so much for this, lhduffer.

By way of update - we visited the oncologist who says that based on his experience, the patterns of metastatic spread from the colon to the peritoneum, the location and the mobility characteric of the tumour (it's moving around, which is apparently a good sign), he believes the nodule, despite it's growth, is probably nothing to worry about. He brought it to the tumour board in any event, and the tumour board came to the same conclusion. While comforting and combined with the fact that my wife is young (41), they ordered a PET scan for added comfort.

While I try not to be a cynic - part of me worries that maybe it is something they're worried about but not saying and not getting us hysterical until the PET results come back. We do trust our oncologist completely so hopefully this is just my mind playing games on me. We all hang on every word and over-analyze everything they say, probably to our detriment.

My biggest concern is that it's growing, albeit slowly. It's been there for a couple years already per he previous scan reports, but only recently has it been growing (since May of this year, when it was about 0.8mm). We are told that things grow all the time in bodies - in cancer survivors, cancer patients and healthy people and in all three cases it's just normal that things grow. Our concern of course is that any time ANYTHING grows in my wife, we are worried. I wonder if anyone has any stories about something that has grown and turned out to be nothing?

The PET scan is this week. We're on pins and needles...thank you all for your support.

Stage 4 Patient doing great, but 1 question

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