Need advice from long time survivors re when to stop scans

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dianetavegia
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Need advice from long time survivors re when to stop scans

Postby dianetavegia » Sun Mar 26, 2017 8:33 am

I'm sure I mentioned this six months ago but now is the time.
I've had all my 6 month testing except my Chest CT and blood work. My MRU/MRI were great. No signs of disease anywhere. The MRU includes ovaries, uterus, bladder, etc. It was ordered due to pink urine after intense 3 hours of cardio/ aerobics/ circuit training. I also had a cystoscopy which doctor deemed 'Now THIS is what a bladder SHOULD look like!' The MRI showed only the base of my lungs but the 3 teeny nodules that have been on my scans for 8 years have been deemed benign and 'off the books' as in no need to keep watching them. My CEA 6 months ago was the lowest it's ever been at 2.7 as it usually is 3.0. Labcorp has 3.9 as high normal and 4.7 as mean. My highest was 6.4 when my liver met was found.

So, this will be 5 years since my liver resection with no follow up chemo. Six months ago my onc mentioned passing me off to a GP and letting him order CEA and only do CT/ MRI scans if there were any elevations. NOTE: CEA is not a good indicator for lung involvement.

I asked my onc friend in Australia and he admits he's a pessimist and would suggest a CEA every 3 to 6 months and a chest x ray once a year for the rest of my life or at least a total of 10 years.

I found and lost one paper that said someone who was in my situation with a small met, 3 years post original dx, complete removal of original tumor, etc. who had clear margins should be considered cured at 6.48 years post hepatic resection. I can't find that again.

I don't have a primary care doctor, but could easily get one to replace him. I don't need an onc since I seriously doubt I'd ever have chemo again due to neuropathy issues. There's one young lady doc I volunteered with at a free medical clinic for a few years about 5 1/2 years ago. She's got a practice affiliated with the same hospital group where I've had all my surgeries and scans.

I think of Traveler whose doctor never did a scan EVER and at 5 years pronounced him cured then did a chest CT due to a bothersome cough and his quick death. Esk2poo skipped scans for four years and then had the large node on his clavicle and he's disappeared all all boards (even where he was a moderator). He's a bit different, tho, because he'd also had melanoma on the bottom of his foot, a spread to his back and bladder cancer in situi.

I don't want to make the wrong decision yet I don't want to continue with scans that could cause another cancer just out of fear.

Anyone with any sage advice? I have a week until the question will arise and I need to think this through before it's forced on me.

Diane
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

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Jacques
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Re: Need advice from long time survivors re when to stop scans

Postby Jacques » Sun Mar 26, 2017 9:39 am

dianetavegia wrote:...I found and lost one paper that said someone who was in my situation with a small met, 3 years post original dx, complete removal of original tumor, etc. who had clear margins should be considered cured at 6.48 years post hepatic resection. I can't find that again...

Cure model survival analysis after hepatic resection for colorectal liver metastases.
https://www.ncbi.nlm.nih.gov/pubmed/25398280
“... After 6.48 years, patients alive without tumor recurrence can be considered cured with 99 % certainty..."

PainInTheAss
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Re: Need advice from long time survivors re when to stop scans

Postby PainInTheAss » Sun Mar 26, 2017 10:14 am

My onc also says he is stopping follow up at 5 years. I plan on finding another method of follow up, probably through my GP, for two reasons.

One, is that my Onc told me that 20% of recurrence tumors do not affect CEA. So, blood tests alone only give you a 4 out of 5 chance of catching something early. But the biggest reason is the stats that show NED rates going down between 5 and 10 years. If everyone stops scans at 5 years, how do they find the cancer for the people between 5 and 10 years? If you wait until there are symptoms, it is very likely already advanced. I believe this is what happened with Tammy Faye Bakker who had a recurrence around 8 years after her initial surgery. I think Oncs look at statistics and think it's very unlikely. I look at it as that if it is possible, I don't want it happening to me. I already won some kind of unluck lottery getting colorectal cancer at 47. I don't want to "win" again having an undetected recurrence after 5 years. I remember another poster when I first joined saying he went 14 months without a scan after 4 years NÉD, and cancer was all over his body. That really stuck in my mind and caused me to insist on scans every 6 months rather than annually like my Onc first suggested.

I'm going to try to get him to scan or MRI me annually up to seven years, then maybe have a GP do annual scans or MRIs up to 10. I think you are right to fear. This is a terrifying disease, and you only have one life. I want to live long enough to have the chance to get cancer from my scans.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

Lee
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Re: Need advice from long time survivors re when to stop scans

Postby Lee » Sun Mar 26, 2017 2:09 pm

I had rectal cancer and was told once rectal cancer can met after the 5 year anniversary, so I made sure I was monitored 10 years out. I only saw my Onc once a year after the 5 year mark. So after the 5 year mark, I had blood work and scans once a year.

My understand colon cancer vs rectal cancer is less likely to met after the 5 year mark.

Hope this helps,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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Bev G
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Re: Need advice from long time survivors re when to stop scans

Postby Bev G » Sun Mar 26, 2017 3:35 pm

Diane, conventional wisdom (and my wisdom, such as it is) says you are CURED. I think your energy these days should be about emotionally finding a way to let this nightmare go. I am NED 7+ years out. It's a work in progress for me to get beyond it. You have been an awesome trooper...now I think you're done

Congratulations, Diane.

xox

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

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LeonW
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Re: Need advice from long time survivors re when to stop scans

Postby LeonW » Sun Mar 26, 2017 6:20 pm

Diana,

My path is similar to yours I think, with check-ups planned until 5 yrs after the liver resection only. I just checked; nothing is shown beyond then. This may well be the accepted procedure, but I won't like being kept in the dark from then, when things will (only) be back to normal from 6.5 yrs after resection (thanks for the stats/study). Plenty of reason for some continued checking beyond 5 yrs, I think.

Will put this on the agenda for my May 30 review. Thanks for raising the issue.
L
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Jul - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Aug - 2x PV embolization (both failed)
Sep 2013 - R liver resect, 25d hosp (liver failure/delirium, lung emboli, encephalopathy), no living cancer (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town/life
2018, scopy: 2 polyps
2018/20 low (1.0-1.4) CEAs/clean CTs: 4x2014, 6x2015-17, 3x2018-20
next June 2021!

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wwroam
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Re: Need advice from long time survivors re when to stop scans

Postby wwroam » Sun Mar 26, 2017 10:24 pm

If all follow up stopped at the 5 year mark I'd really be in trouble now.
My onc has always been sparing with CT scans but when my CEA bumped up in January he re-ordered another blood test for 2 months time. When the CEA had gone up again , without hesitation he ordered a PET.
I got the results on Friday. Two lesions light up on the lung. Only a biopsy will confirm this but he believes that it is a new primary.
While I am not in a good place now, how much worse would I be if I hadn't seen him since 2012.
Stage 3a DX 25/06/07
Folfox complete 30/01/08
7 years NED
Port scheduled for removal 8/02/10 Gone.
PSA .54 No prostate problems
Diagnosed Type 2 Diabetic
SO diagnosed CC Stage IV Liver Mets 23/03/15

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dianetavegia
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Re: Need advice from long time survivors re when to stop scans

Postby dianetavegia » Mon Mar 27, 2017 8:28 am

That's the one, Jacques. I had 5 out of 15 positive nodes at my original dx and this paper has that info available, if you're a member. I can't see the charts.

I don't mind switching to a primary if she'll continue to scan for a few more years. I don't want to make the wrong decision and die in a few years because I rushed this.

Honestly, my onc has never been friendly or helpful. Eight years and he's returned one phone call and that's when the spot on my liver showed up and I was freaking out. It was not a helpful phone call, either. I looked this week and saw 8 unanswered messages on his patient portal. Oh, I got responses from the girl who answers the phone saying they'd gotten my message and doctor would reply, but simple things like, 'Can I have you check my D3 with my upcoming blood work?' was ignored and not ordered. He's super busy now and I'm not a money maker. Two visits a year....

For those with rectal, studies have shown that rectal cancer tends to recur longer/ later than colon so the posts showing oncs dismissing Stage IV patients after 5 years really concern me!
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

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dianetavegia
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Re: Need advice from long time survivors re when to stop scans

Postby dianetavegia » Mon Mar 27, 2017 9:06 am

Bev, It's so hard to let go. My anxiety has become controlled and not as bad at testing time, but the thought of stopping 'early' terrifies me. We've seen so many who are pronounced cured who are dead in a few years.

I've written Dr. Cedric Garland who is the Vit. D3 hero and asked him to invite me to Pubmed so I can see the charts. 6.48 years is for those who had a neg. ln primary. For me, it might be 7 years or longer.
UGH.........

I honestly do not think my onc cares one way or the other about his patients. Instead of coming into the tx room knowing what my tests say, he will read them while I sit there. At least the hospital now puts them online ASAP so I know before he does! Then I have my onc friend in Australia look over them too prior to my onc visit which will be April 11th. I've had my MRI and my CT scan and CEA /blood work are tomorrow morning.

I don't know if I'll ever be able to let this go. Cancer has drastically changed my outlook on life.

Diane
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

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Bev G
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Re: Need advice from long time survivors re when to stop scans

Postby Bev G » Mon Mar 27, 2017 10:40 am

dianetavegia wrote:Bev, It's so hard to let go. My anxiety has become controlled and not as bad at testing time, but the thought of stopping 'early' terrifies me. We've seen so many who are pronounced cured who are dead in a few years.

I've written Dr. Cedric Garland who is the Vit. D3 hero and asked him to invite me to Pubmed so I can see the charts. 6.48 years is for those who had a neg. ln primary. For me, it might be 7 years or longer.
UGH.........

I honestly do not think my onc cares one way or the other about his patients. Instead of coming into the tx room knowing what my tests say, he will read them while I sit there. At least the hospital now puts them online ASAP so I know before he does! Then I have my onc friend in Australia look over them too prior to my onc visit which will be April 11th. I've had my MRI and my CT scan and CEA /blood work are tomorrow morning.

I don't know if I'll ever be able to let this go. Cancer has drastically changed my outlook on life.

Diane


Diane, I totally agree with your concern about this dilemma. My onc at Dartmouth told me I needed NO further follow-up. I was, and am, concerned and very uneasy about this. She was pretty adamant about there being no need for future scans. I don't think CEA has been a very good marker, butt it's hard to know since I never (thank God) had a recurrence. My big issues these days are chemo-related and permanent. I had far less chemo than many of my CRC friends, butt I got nailed chemo-wise. My onc said the discontinuation of scans is protocol. I've already had a scare where they thought I had a new primary (didn't though) I've had about 30 pet scans over the years. Each PET is the equivalent radiation of 600 chest x-rays. I think Medicare will not pay for follow-up scans after 5 years, so I've kind of resolved to ending the scans. I don't worry about the cancer coming back anymore. I understand the stats and am not particularly scared by them. I no longer think the CRC will come back, although I will never stop worrying about the havoc chemo wrecked on my body.

I hope whatever you decide will bring you the peace you so richly deserve.

Love,

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

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betsydoglover
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Re: Need advice from long time survivors re when to stop scans

Postby betsydoglover » Mon Mar 27, 2017 2:17 pm

Diane -

My situation is different from yours in that while I had liver involvement it was resolved by basic chemo - never had a liver resection. For that reason, my onc has been very concerned about aggressively following me - the course of my disease is sufficiently unusual.

I am almost 12 years out from Stage 4 diagnosis (5/05). One recurrence (lung 11/08). Surgery, followup chemo and NED since 4/09. In 6/2015 I had a scan and that's when we decided to go to 1/year. Had been doing every 4 and then every 6 prior to that.

I worry about scan induced cancer, but I am also worried about not scanning at all. I understand your concerns, and us Stage 4 patients need to advocate for ourselves, lest doctors, even the very good ones, treat us a statistics.

Good luck with your decisions.
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

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betsydoglover
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Re: Need advice from long time survivors re when to stop scans

Postby betsydoglover » Mon Mar 27, 2017 2:23 pm

Bev wrote -

>>I think Medicare will not pay for follow-up scans after 5 years, so I've kind of resolved to ending the scans. <<

My onc wondered if Medicare would put me in a "cured" category and not allow scans, but I joined Medicare in 8/14 and have had 2 Medicare paid scans since. Maybe because I never had a liver resection?

Take care,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

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dianetavegia
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Re: Need advice from long time survivors re when to stop scans

Postby dianetavegia » Mon Mar 27, 2017 2:25 pm

Thanks Bev and everyone.

I recently read an article that said KRAS Mutants have a much worse prognosis than Wild or non KRAS. I broke THAT mold. Unless my CT of my lungs or CEA tomorrow are not good news, I've beaten the 50% odds so broken that mold, too.

I can't ever take FOLFOX again and probably others due to the severe CNS damage. It took me a full 2 years to calm down quite a bit from my health anxiety. I went back at tax time and counted how many times I went to the doctor (especially walk in clinics) the 2nd year after my HR and it was 82 times! Only 3 times out of 82 did I have something wrong with me! Two UTI's and the real flu.

We have BCBS and Medicare thru Oct. 1st. My husband is turning 70 and he didn't get a new contract for the upcoming school year. He's gone to the school board and superintendent and they claim he didn't send in the letter, etc. He has no way to prove..... Asst. Principal 'can't remember 240 people'. He's having to reapply for his own job AND he just got his PERFECT review this past week. We found out by accident when he saw a teacher with her contract and I looked at the school board meetings to see if they'd phased out his special class. They 'accepted his resignation' in early February!!!! So, I'm sick over that. He'll be 4 months shy of retirement when school ends this year!

So, unless something changes, I'll be on Medicare as primary and have to find a secondary and all new doctors anyhow.

I'm just overwhelmed and afraid because of Traveler and Esk2poo (plus many others who were undertreated, under followed).
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

Bob_Weiss
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Re: Need advice from long time survivors re when to stop scans

Postby Bob_Weiss » Mon Mar 27, 2017 3:43 pm

I stopped after I completed my last follow-up visit to the oncologist, who was the doctor ordering the scans.. My gastroenterologist said I should phone him 5 years after my last colonoscopy. If I have no suspicious symptoms at that time, he will recommend that I suspend colon exams. I am 70+ years, and apparently colonoscopies are not recommended beyond that age (under normal circumstances). Perhaps this is true for scans also, but I am not sure.

Unfortunately, I cannot get advice from my primary care doctor, who admitted he was not familiar with protocols for cancer patients.
Stage 3 R/C -1 node+ ( 7/09)
5 wks radiation, 2 wks chemo: 5FU (8-9/09)
Rectal surgery: tumor removal (11/09)
10 rounds Xeloda: 3000mg/daily 1 wk on/1 wk off (1/10-6/10)
Supplements: Aspirin, Calcium, Vit. D3
03/27/17: 7+ yrs. since surgery--still NED

MissMolly
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Re: Need advice from long time survivors re when to stop scans

Postby MissMolly » Mon Mar 27, 2017 7:36 pm

dianetavegia wrote:I can't ever take FOLFOX again and probably others due to the severe CNS damage. It took me a full 2 years to calm down quite a bit from my health anxiety. I went back at tax time and counted how many times I went to the doctor (especially walk in clinics) the 2nd year after my HR and it was 82 times! Only 3 times out of 82 did I have something wrong with me! Two UTI's and the real flu.


I think your true quest is to find a level of monitoring and surveillance that will allow you to live your best life without the heavy burden of anxiety that engulfs you.

When my brother was 15 years of age, he was unexpectedly diagnosed with a Grade IV glioblastoma multiforma - a highly malignant brain tumor. The year was 1984. Recognize that there were no advanced imaging techniques (no CT scans, no MRIs, no PET scans) in 1984. Neurosurgical techniques were simplistic and crude in comparison with today's advanced surgical capabilities. Chemotherapy was not able to cross the blood brain barrier. My brother underwent incomplete surgical debunking of a wispy, spider-web type tumor that occupied a tangerine-sized portion of his left parietal-temoral lobe. Tissue pathology was forwarded to Memorial Sloan Kettering, Stanford University, and MD Anderson. Physicians had nothing to offer. My parents were advised that my brother's prognosis was terminal with a 3-4 month time horizon.

My brother come home from the hospital after a 26 day stay due complications of leakage of cerebrospinal fluid. As a family, we prepared ourselves for what seemed to be a horrible inevitable. We hunkered down. And waited.

This story has a "happy" ending. My brother did not die. My brother survived a Grade IV glioblastoma multiforma diagnosis, repeatedly confirmed by tumor tissue samples from the debunking surgery. There was full agreement among each of the leading medical centers of the tumor's histology. Current imaging shows the titanium clips in his brain and an empty/cavernous area previously occupied by the tumor.

That my brother is alive cannot be explained by medical science. Physicians theorize that his immune system unilaterally identified and eradicated the tumor. My brother was his own immunotherapy before the naming of the emerging science that we see today.

My brother will tell you that he never felt that he was going to die. He is very quietly mannered in his discussion about his cancer and survival.

He is not without permanent deficits from the tumor's presence. He has uncontrolled grand mal seizures and right-sided spasticity that affects his gross and fine motor coordination.

My brother does not agonize about follow-up scans and the thread of a recurrence. He maintains a philosophy that he is living time that he was not otherwise projected to actualize. He lives his life as a genuine gift. Whatever his is actual fate may ultimately be, that he is living today was never a certainty. He has traveled the world - from the Antarctic to the North Pole, from South America to St. Petersburg, Russia.

My brother deeply influenced my own life.

I became a physical therapist after watching physical therapy transform his weakened physical frame. As a physical therapist, I specialized in neurological rehabilitation. I have worked with severe head and spinal cord injury - individuals who have been robbed of the ability to walk, who can no longer scratch their nose when it itches, incontinent of bowel and bladder function. I have worked with individuals with progressive neurological disorders - ALS, MS, Parkinson's. Observing the horror of people trapped in failing physical bodies with intact cognitive thinking skills and awareness. The cruelty of disease quite evident.

My own life's trajectory has been troubled by loss of health. A former marathon runner and work-a-holic, I am a shell of my former self. I have been on Palliative Care for 4 years as my health insidiously withers away. I experienced a profound near-death experience when my intestine perforated. The near-death experience has deeply affected my views on death and
dying.

My fear is not about dying. My fear is about losing my functional independence and living a life with essential no/low quality.

Less do I want quantity of life, less do I want a long life. More do I want quality to my life, more do I want a meaningful and
engaging life.

I life a simple life limited by fragile health. I depend on a hefty cocktail of narcotics to keep severe pain at bay. It requires tremendous effort to retain the ability to walk. Going out to a movie or dinner are memories of a past time. Living with compromised health is not restful, it is exhausting.

In this narrative, Diane, my advice to you is to live your best life now, in the present.

While you are rightfully concerned about a cancer recurrence, it may be that a health condition totally off of your radar becomes an active problem in the years ahead.

In worrying about a cancer recurrence, you are giving cancer power over your life.

Talk with your new primary care physician about what YOU need in terms of survelliance to give you peace of mind and power
over your life. You deserve to have peace of mind. Ask yourself: "What will give ME peace of mind?" Knowing that you may never be 100% anxiety free, what type of surveillance and what frequency of surveillance do You need? You are your own
unique person and your needs may be different than that recommended by a statistical study.

Best to you in your decision,
- Karen -
If your current oncologist is as insensitive as you mention, find a new one. There is no reason to stay with someone who injects negative power into your life.
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.


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