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Recurrence
Angiea
18 Posts

My sister has been getting treatment for colon cancer since a June 2021 diagnosis. So as a family we're still learning, but not exactly new to this. After being on CancerConnect for a while and tuned in to all the cancer stories in the news, I'm starting to feel like there is (almost) ALWAYS recurrence. Does anyone know what the odds are? Do you know of anyone whose lived without getting cancer again? Angie

19 Replies
Kuching
461 Posts
@Angiea
I can’t really answer your questions, because I am stage 4, right from diagnosis, so recurrence isn’t an option - the cancer is here to stay! But I will say that I am 3 1/2 years since diagnosis, and still living a more or less normal life, feeling good, hiking and kayaking and looking after myself without any help. I think you have to remember that the people you see on the news, or on this site, are the ones who have active cancer. The ones - and there are lots of them - that didn’t have recurrence are not in the news, and tend to drop off this site too, as they no longer need it. So don’t be fooled by appearances! Cancer treatment has come a long way, just in the past decade. Hang in there!
Whitelilies
2745 Posts

@Angiea Hello……How is your sister doing?

You asked about “odds” ? (Of recurrence…..)……Seeing that I am not a Dr/a good thing……my humble thoughts are….it depends SO much on the Individual Case ! period ! Where is the cancer/tumour? Was there a successful surgery? etc…..There may be ‘blanket’ odds…but truly do NOT look/focus on those, please….they become outdated quickly…..and do not pertain to your file/your sister…..

As was mentioned earlier…..I agree, that folks who do not have a recurrence…..simply carry on….and are no longer on the site…..so you dont really “hear” of the ALL the good news stories……

I was diagnosed in 2018 with Colorectal Cancer……Here I am too!

Topic of Recurrence. ……A “huge” topic/concern….for me…..for many I will assume…..we all read/hear of “it” coming back! So, it stays “parked” in our thoughts; but we must carry on…….

It is hard…..I truly understand……on your sister/your family…..just keep supporting her…..and know we are all here, too, for support.

Thank you @Runner Girl for the tag.

Regards

Whitelilies

#Fear of Recurrence

SQLC
37 Posts

My husband was diagnosed with stage 4 colon cancer with Mets to his liver 3 years ago. His present treatment is chemo by pill form which he tolerates well. His last CT scan showed the tumours were not growing which his oncologist said is good news. How long will this last? Who knows. We just go from CT scan to CT scan.We try to stay in the present and not worry about the future - which is not easy some days. I know he will never be cured we are just grateful for every day we still have together.

Essjay
2153 Posts

@Angiea recurrence rates do depend on the cancer and the stage at diagnosis generally.

I had Triple negative breast cancer stage 1 and my recurrence risk is 20%, a friend had hormone positive breast cancer stage 2 and her recurrence risk is 3%. Recurrence for me is more likely in the first 5 years (I’m 3.5 years post-treatment), for my friend the risk is over her lifetime. We are both at the same risk of another new breast cancer at the same risk % as any other woman - so I could develop cancer in the other breast or the same breast hormone positive, or hormone negative. Other cancers have different risks…

Right now they can predict the chances of a patient like me or like your sister having the same cancer return in the same place - that’s the stats they give you.

However, they cannot predict the patients who will have metastases and their recurrence is stage 4. They actually don’t record this very well. If I had metastases I would be in the cancer record as a stage 1 patient with metastases from what I have been able to research.

So it’s complicated…very complicated, and so many unknowns. It’s the hardest part of being a cancer survivor xx

J1f2s3
57 Posts

@Angiea
Hi! I’ve had an extremely rare, and aggressive colon cancer Stage 2 , in July 2020. My odds did not look promising… I did chemotherapy drip, and did took home a drip bottle for 2 day…. Then back into the hospital for a another round… this was repeated 6 weeks later….during all this I was doing Radiation therapy 30 rounds ….

Thankfully it worked and I’m (NED) no evidenced of disease….. I been told that now I can get more rare cancers ….. now I’m 2.4 years out of my 5 year window… yes every CT scan worries me,but I’ve living my life to the fullest.

Jeff

sgt. pepper
197 Posts
Recurrence is a huge issue for me since I have had two since my original diagnosis of melanoma in 2010. The first was five years later and after surgery and radiation, a third time happened nine months later. Fortunately, a clinical trial of immunotherapy was successful and I've been cancer free for over five years now. I do sometimes worry about it recurring as the statistics are not great and there are no longterm numbers available given the recency of the treatments. I don't dwell on it and try to carry on as if cancer was never a part of my life. I know of many survivors who were "cured" with no recurrence so that is encouraging. We can't predict or more importantly control the future so don't worry about things that many never happen anways.

Sgt. Pepper
bill2022
10 Posts

@Angiea
Angie, sorry to hear about your sister's diagnosis. As many have already pointed out, the issue of recurrence is on all of our minds but we can't let it overtake us. Although there are times that I do worry about recurrence (particularly as the time for testing approaches), I remind myself that we face risks in life on a daily basis besides cancer (e.g., I could get injured or die in a car accident going to work but that rarely,do I think of that). That being said, I do try to minimize recurrence by looking after myself (e.g., good diet, exercise, no alcohol, etc.) but aside from that, recurrence is beyond my control and thus stressing and worrying about it certainly wont help. Cancer has perhaps grounded me in some respects as it made me aware of my own mortality and that life is short in general. We should try and enjoy every moment that we are alive.

Wishing your sister all the best!
Bill

Angiea
18 Posts

@Essjay Thank you. Do you know how your doc arrived at the 20%? Just curious as I didn't know that was possible. Is that specific to you or just the type of cancer?

Angiea
18 Posts

@Essjay So spread is not recurrence…that's considered to be different?

Angiea
18 Posts

@J1f2s3 Congrats on the NED! You can get more rare cancers because of the first cancer, the treatment or…?

Charles
134 Posts

@Angiea
We all sympathize with your situation.

It's tricky to get your head around the difference between “NED” (no evidence of disease) and “cancer free” (no chance of recurrence). “NED” is a fact – a statement of the patient's status right now. “Cancer free” is a promise.

Really, no doc (or patient) should ever say that a patient is “cancer free”. A single cancerous cell, or a very small tumor, may be undetectable for years, as it slowly multiplies (or grows). It may become detectable, or not. A large fraction of old men who die of heart attacks and such, and are autopsied, show signs of prostate cancer:

. . . They died with cancer, not of cancer.

I had a prostatectomy 15 years ago, and the best that I can say is that I haven't had a recurrence yet. My chance of a recurrence is quite low, but I still worry when I take a PSA test that would detect one.

If you want some estimates of recurrence probabilities (which will depend on all kinds of characteristics of the tumour), you might look here:

Remember that your sister is unique, and so was her tumour. Probabilities are useful tools, but they don't predict what will happen in any individual case.

And, as several people have said, probabilities based on past data may not be very accurate in predicting the future, when treatments are improving.

. Charles

J1f2s3
57 Posts

@Angiea
I can get more because of the first cancer. The gene as awoken as explained to me by my Oncologist….. so my next CT Scan is February but I have a colonoscopy on December 14, that scares me on finding something awful.
Jeff

Mammabear
348 Posts

@Angiea never tell me the odds. Thanks for the tag @Runner Girl .

I was diagnosed with cancer 2.0 4.5 yeas after my first diagnosis. Not colon (breast) but I think what you are seeing are all similar stories. There are many of us LIVING with metastatic cancer. We are not the same, we continue with treatment, but we are LIVING.

I have a shirt that says Not Today MF, not today!

I have a 90 min infusion every three weeks. The antibodies are well tolerated. I work full time, walk the dog, hunt, live my life. Yes I get tired. Yes I nap. I can't do what I did, but I am happy to be alive and living my life.

Treatments change all the time. Cancer can't have her today! It may eventually get her. But not today MF. Not today!

Sadie12
298 Posts

@Mammabear…OH, how I want that T-shirt! I first heard the saying here and it's in my mind for every time that little niggling worry tries to overtake me.

Not TODAY, MF, NOT today!!!!

(I also say it in my head when someone with an issue tries to ruin my day :) )

@Angiea - I can remember the feeling of that realization that the oncologist talked of recurrence rates…Oh, this isn't ever going to be done! The first rate I received was 96% within 2 years….and I said ‘Oh, good, I’ve been in the top 4% of my class before…THAT's ME!'. I chose to be optimistic. I've been in remission since Feb 21 and on maintenance drugs. Now, my oncologist says my recurrence rate is about 50%…but I really hadn't asked and I don't know what time frame she was talking about. I have a genetic mutation BRCA2 which makes my risk higher for some cancers.

It's all statistics for a large population over time. It's somewhat guesswork. I don't think any doctor can predict the future.

I am done worrying for the time being. I have small children and I plan to be around for a very long time…if that bus doesn't run a red light while I am walking across the intersection. However, I have not yet got another dog (my 2 dogs both died a few months before my diagnosis)…because I can't commit to that 10-12 years…I guess I'm not there yet.

I live my life each day and think Maybe one day, but Not TODAY!!!!

Sadie

Cynthia Mac
4217 Posts
Charles‍ , I’ve never thought of “cancer free” as “cancer free forever,” but “cancer free today”. That makes it synonymous with NED in that there is no evidence of cancer/ disease today.

My parents, between them, had 5 bouts of different cancers. Mom had pre-cancerous bowel issues and had a section of bowel removed, then years later developed a melanoma on her back that had to be removed. Dad had prostate cancer in 2002, then around 2010 he had a melanoma removed from his left arm (attributed to driving with his arm out the window all those years). Then, in 2017, he was diagnosed with lung cancer. He did surgery, then chemo, but his odds of recurrence was in the 50% range (this was a rare, aggressive lung cancer), and it came back just over a year after, and it had snuck into his liver (metastasis).

I attribute their surviving 4 of these 5 bouts of separate cancers for so many years to early detection. Perhaps their experience can be attributed to the comment about “the gene being awakened,” and perhaps it is just that they had partaken in more high-risk activities in their life. It’s hard to know. In fact, there’s really no way of knowing.

I have heard the information about prostate issues being evident in many more men than are actually diagnosed, too. Again, I advocate for routine screening which leads to early detection. The same for breast and cervical cancers. It’s the best tool we have to give us the best chance at survival.
WelshChick
4 Posts

@Angiea
By dad was diagnosed with colon cancer over 22 yrs ago and he’s been cancer free now for 20yrs!! He was also diagnosed with an aggressive form of prostrate cancer a week after his colon cancer. They operated and removed part of his colon and he received chemo and radiation for both cancers!! And he’s still going strong at 84 yrs old, with no reoccurrence.

Stay positive and live in the moment!

Sending love and hugs to you all 🥰

Charles
134 Posts

@Cynthia Mac:
. . . .
I attribute their surviving 4 of these 5 bouts of separate cancers for so many years to early detection. Perhaps their experience can be attributed to the comment about “the gene being awakened,” and perhaps it is just that they had partaken in more high-risk activities in their life. It’s hard to know. In fact, there’s really no way of knowing.

I have heard the information about prostate issues being evident in many more men than are actually diagnosed, too. Again, I advocate for routine screening which leads to early detection. The same for breast and cervical cancers. It’s the best tool we have to give us the best chance at survival.

I've never heard this “the gene was awakened” idea before. I didn't think there was a general-purpose “cancer gene”, just specific genes that increased a person's chances to get specific cancers. I should do some studying about that.

I agree completely about the importance of routine screening and early detection. PSA testing is a reasonably-good screening technique for prostate cancer. I hope that the growing use of fecal occult blood tests improves the stats for colon cancer.

. Charles

Angiea
18 Posts

@WelshChick Thanks…good to know it happens for some people! The only other person I know of is Barry Stein of Colorectal Canada.

Angiea
18 Posts

@Sadie12 Yes, thank you! I really just wanted to know that is possible and does happen. Not looking for impossible guarantees, just to know it could happen…something to hope for. The unique cruelty of cancer is the ongoing threat.

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