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Thread: Timeline of cancer growth/mutation

  1. #1
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    Timeline of cancer growth/mutation

    This past Friday I attended a pancreatic symposium at Moffitt where experts discussed new treatments and advances.

    One the more interesting things I took note of (and I hope I interpreted this correctly) was that it takes about 11 years for a cell to mutate and grow into a cancerous lesion or tumor. After that it typically takes 6 years for the cancer to spread to other areas of the body. After it spreads, it's often 2 years until death. If this is incorrect and I heard wrong, please correct me. Given that pancreatic cancer is often caught late, most people probably don't even know they have cancer until it is too late which might explain the low 5 year survival rates.

    This leads me to few questions in terms of treatment options and quality of life. I think most of us would overwhelming choose to battle and do any treatment possible. However, some may choose to live with the disease with minimal treatments depending on the stage. I don't mean for this to start a debate, I am asking in order to know what to expect in regards to my fathers cancer and how we as a family should prepare, as it is ultimately his decision on which steps to do going forward.

    1) Does anyone have any real life stories of patients who chose not to have any treatment and simply lived with the disease? Given that symptoms present late, how does this disease progress. Is it sort of like one day walking off the edge of a cliff and the symptoms hit you at once, or is it more of a slow progression?

    2) For those that didn't have any symptoms and were otherwise healthy prior to diagnosis, how did you get the courage to fight given the potential side effects and complications of chemo, radiation and or surgery? What kind of quality of life can we expect during and post chemo/surgery? My father if eligible will have an open distal pan/splenectomy.

    Thanks.
    Father age 65 male, excellent health, no symptoms, routine CT revealed pancreatic mass
    Oct 2019...CT scan for hernia pain reveals 2 x 2.2cm ill-defined mass body/tail
    Oct 2...CA 19-19 of 65.7
    Oct 2 ...Upper EUS biopsy...invasion to splenic artery, others veins/arteries suggest no local invasion
    Oct 7...CA 19-9 drops to 51.7
    Oct 8...additional CT scan reveals body/tail soft tissue mass 2.5 x 1.4 cm, main duct dilated up to 1.1cm, no definite local invasion, possible spot near liver
    Oct 8...PET body/tail lesion SUV max 3.8, peripancreatic soft tissue inseparable from lesion and 4th portion of duodenum/proximal jejunum, no definite evidence of metastatic disease
    Oct 18...biopsy...mucinous adenocarcinoma in background of extracellular mucin, no mention of cyst
    Nov 5...FOLFIRINOX begins
    ...followed by radiation and hopefully surgery for distal/splenectomy
    Staying positive in the face of adversity.
    Take life one breath at a time and be grateful for every moment.

  2. #2
    Super Moderator Top User ddessert's Avatar
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    So I think that timeline starts with the first mutation of normal cells which is a long way from being cancer. Along the way, many mutations must pile up before a cell can become a cancerous. See my blog post on the Hallmarks of cancer. These mutations happen one at a time over many years. Symptoms will not even show for 15-18 years.

    Decisions about treatment can be highly personal. For a young parent, the desire to live a long life can be very strong. For some parents, they want to see their children graduate, marry, or have grandchildren so some sort of timeline is involved. For newly retired people, they may be looking forward to spending some years with their spouse. Some elderly may feel that they have to die of something and this may be it.

    You have to be cognizant that when you ask about decisions for patients who have decided not to treat, you will not usually find those people on support forums.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - IMRT+Xeloda
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

  3. #3
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    Dear drj
    Hello, I think we have all asked this question at times, especially before treatments start. ę what will it be like?Ē, worse than the disease itself? Certainly, many pc patients eventually stop treatments because the body gives up and pathological issues related directly to cancer accumulate. Then, quickly, cancer takes its course. I watched that happening with mom 3.5 months before she died when she could not get treatments. I suppose thatís what itís like without effective treatments. When treatment was working she could walk, eat smthg, etc. Then, she stopped responding exactly as expected by the drug company study I found and read on line (6-7 months latter on) and her clinical image deteriorated very fast. I donít know how she would have done without any treatment whatsoever. However, her pain reduced a lot within the first 3 weeks of treatment and that was due to the effect the chemo had on the tumor for a few months. I wish you the best outcome for your case

  4. #4
    Simonedriva:

    Could you provide a reference for the drug study you cited ?

    Thanks,

    RW
    57 year old Wife's PC:
    4-19 - Constipation. "You're old, take Miralax".
    7-14-19 - Constipation with pain below the right rib cage. Again "Your old, take Miralax". I say BS and go to Urgent Care.
    7-15-19 - Urgent Care says "BS" on "Miralax" & orders abdominal CT scan.
    7-19-19 - Abd CT Scan reveals 6.0 x 4.9 cm mass in the pancreatic head which encases the superior mesenteric vein.
    7-26-19 - Biopsy confirms adenocarcinoma
    8-8-19 - Start FOLFIRINOX once every two weeks.
    9-20-19 - End first four rounds of FOLFIRINOX.
    9-27-19 - CT scan reveals tumor reduced to 4.6 x 3.2 cm (50% reduction), but now evidence of malignancy in the lymph nodes.
    10-4-19 - Onc suggests gemcitabine nab-paclitaxel due to lymph node increase/high CA19-9 obtained at 1st & 2nd treatments. NO CA19-9 obtained at 3rd & 4th treatments. ONLY one CA19-9 post treatment initiation. I demand CA19-9 test before switchig.
    10-5-19 - CA19-9 test ~ 10 weeks after treat start is 9700. Staying with Folfirinox

  5. #5
    Moderator Senior User BrigitteM's Avatar
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    drj,

    Iím addressing your second question. When I was diagnosed almost 4 years ago, I had no symptoms and within a couple of seconds I was syphoned into the crazy world of pancreatic cancer. I never felt that I had courage and I don't think this is a question of choosing the battle or not. My instinct for life took me where it wanted to go. I also must say that my medical team had given me a little slice of hope. The combination led me me to accept their treatment plan -- one year of very agressive treatment, chemo, radiation, Whipple and then chemo again. The quality of life during that year was horrific, but I went through it because I felt that what was the thing to do. It turned out to be very successful, I was cancer free after the Whipple and had 2 full wonderful years cancer free.

    A recurrence appeared 2 years after the Whipple. This was again a difficult transition but I guess I still had enough appetite for life to go through chemotherapy again. Now in stage 4, I started a clinical trial that lasted a full year until the cancer started to grow again. The quality of life during that year was not great, but it was bearable. I stopped the trial, was given a break for 5 weeks during which I witnessed my body going through an amazing recovery. I was again full of life and I felt it was still worth going through treatments. I just started a new clinical trial whose side effects are minimal. I hope it will work.

    After each treatment plan, I was so amazed to realize how I was able to tolerate the suffering. In fact, I think it is easier for the patient than for the caregivers and the entourage.

    I believe my acceptance in pursuing treatment is based on a balance between quality of life, appetite for life, reasonable hope given by my medical team and having found some meaning in this way in life.

    I would trust your father's decisions at each step of the treatment. He will know when enough is enough.As long as he accepts the treatment, I would think this is because he still enjoy life despite the roller coasters the disease.

    Hope this helps... Brigitte
    __________________________________________________ ___________________
    1/12/2016 No symptoms except ongoing fatigue; blood test revealed elevated liver enzymes
    1/18/2016 Liver ultrasound, then MRI confirmed enlarged bile duct
    1/21/2016 ERCP and placement of a temporary stent
    1/28/2016 CT-Scan showed a lesion on the head of pancreas
    2/09/2016 2nd ERCP + EUS + FNA
    2/12/2016 DX Borderline resectable pancreas ductal adenocarcinoma - Stage 3 @ 61
    2/24/2016 FOLFIRINOX 3 cycles (6 infusions)
    5/12/2016 CYBER-KNIFE Stereotactic Radiation 3 sessions
    6/16/2016 WHIPPLE + portal vein and right hepatic artery reconstructions - 0/19 nodes pos - no mets. Restaged to 1A
    8/31/2016 FOLFOX for 3 cycles (6 infusions)
    Sept 2016 Know Your Tumor - PANCAN.org
    11/4/2016 CT Scan clear - NED
    May 2017 Liver lesion - DX mild fatty liver disease - NED
    Aug 2017 Several small lung nodules - slow growth - NED until August 2018
    Aug 2018 Pancreatic metastasis confirmed by biopsy.
    Sept 2018 Starting clinical trial with RX-3117 and Abraxane (NCT03189914)
    March 2019 Lung nodules are stable

  6. #6
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    Dear Brigitte, Simone, and ddessert,

    Thank you all for your real life, first hand advice. It helps those of us new to this experience prepare for the roller coaster ahead. My father will start chemo next week with a full dose of Folfirinox. He seems to think the side effects won't be bad, I hope and pray he is right. As a caregiver, I often feel helpless that I can't do more to help, especially knowing the struggle ahead. Stay strong everyone. Thank you!
    Father age 65 male, excellent health, no symptoms, routine CT revealed pancreatic mass
    Oct 2019...CT scan for hernia pain reveals 2 x 2.2cm ill-defined mass body/tail
    Oct 2...CA 19-19 of 65.7
    Oct 2 ...Upper EUS biopsy...invasion to splenic artery, others veins/arteries suggest no local invasion
    Oct 7...CA 19-9 drops to 51.7
    Oct 8...additional CT scan reveals body/tail soft tissue mass 2.5 x 1.4 cm, main duct dilated up to 1.1cm, no definite local invasion, possible spot near liver
    Oct 8...PET body/tail lesion SUV max 3.8, peripancreatic soft tissue inseparable from lesion and 4th portion of duodenum/proximal jejunum, no definite evidence of metastatic disease
    Oct 18...biopsy...mucinous adenocarcinoma in background of extracellular mucin, no mention of cyst
    Nov 5...FOLFIRINOX begins
    ...followed by radiation and hopefully surgery for distal/splenectomy
    Staying positive in the face of adversity.
    Take life one breath at a time and be grateful for every moment.

  7. #7
    Super Moderator Top User ddessert's Avatar
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    I hesitate to say this to others, but I asked a big-time oncologist about how people tolerate chemotherapy. So this is a generalization and not applicable to everyone, but they agreed that people who tolerate chemo well seem to be the ones who benefit the most.

    So there’s a few items to unpack there.

    First, if the chemo is working well, a lot of your other symptoms resolve themselves.
    Second, getting “more” chemo can help shrink the tumor. I put double-quotes around “more” because it’s just a little different meaning then effective (or, working well).

    The questionable group is now, people whose chemo is working well but they just can’t tolerate the side effects. For those, I’d look into lower doses. Since I’ve written that post, there’s been another comparison showing just as, if not more effective Gem/Abraxane.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - IMRT+Xeloda
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

  8. #8
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    Hello rambling wreck,
    It was the median survival info for Abraxane- Gemzar median survival rates according to the drug company claim. However, it was a couple years back and I canít remember where I found it. Certainly on line since back then I was frantically googling for published results. That 6.8 months median survival for stage 3 without progression hit me hard. Thatís how I still remember it.

  9. #9
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    this is really interesting to me as well. I was diagnosed in 2018 with slight gastro problems, maybe not even related to my PC. It was a teeny .1 mm spot on my pancreas. w/in weeks i was whipped into chemo,(gem abraxaxne) then 3 mos into an insanely difficult surgery(distal pc) , and post chemo (folifirnox) . I had a mere 6 mos w/no activity then BAM. its been non stop .....an ablated cancerous lymph node.(radiation) CHECK. 3 mos later....4 more lesions around my liver. Check. I feel like everthing has been accelerated by treatment. W/in less than 2 years i went from stage 2a to metastatic PC. Did i poke a sleeping bear? If my little ole .1 mm tumor would have grown at such a slow rate....would i have been better off than my radiologist telling me 5 yrs is generous?
    +++++++++++++++++++++++++++++
    53 yrs old
    3/8/18 went to ER w/what i thought to be gall bladder issues...CT and MRI found 1.5 cm spot on body/neck of pancreas
    Followed up with EUS No mets/contained
    3/18 started 4 cycles of Gem/Abrax
    5/18 CT scan showed tumor shrinkage .97cm
    7/18 Pre surgery CT scan shows slight tumor growth (1.2cm) could be necrosis.
    8/3/18 distal pancreatomy/splenectomy-open procedure. No mets, 1 lymph node involvement.(distant) Staged 2B
    9/18 CA19 33 NORMAL
    10/10/18 Starting 3 mos Folfirinox adjuvant therapy.
    5/19 CT scan shows enlarged lymph node at surgical site. EUS biopsy determines cancer. Local and contained.
    6/19 Begin radiation. View Ray MRI 5 day regimen.
    8/19 CA19-9 down! no signs of lymph node!!!
    10/2 3 weeks of abdominal/right side pain. CT scan shows small (1mm) soft tissue nodule suspect for Peritoneal Mestastasis. CA 19- way up (1010)

  10. #10
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    susanmac,

    My father's situation is very similar to yours. The poking of a sleeping bear analogy is spot on and it's something we are really struggling with. There really seems to be no right answer as everyone responds differently to treatment. Likewise, the growth of cancer and how fast it can potentially grow and spread throughout the body is something I just can't seem to find any studies on, because I imagine most people choose treatment when cancer is discovered, so we really don't know the timeline of doing nothing.

    Everyone has different immune systems, diets, and internal/external factors governing their individual health. Can some people keep cancer at bay longer than others? Does chemo and difficult surgery of the pancreas weaken the body and immune system so much that it allows cancer to grow spread more rapidly? How many people out there actually have some small form of cancer (pancreatic or other type) and simply are living with it unbeknownst to them? These questions are more for people with early stages of cancer and are fair questions to ask. I've talked to several late stage survivors who wish they were able to catch the cancer sooner so the argument can be made either way.
    Father age 65 male, excellent health, no symptoms, routine CT revealed pancreatic mass
    Oct 2019...CT scan for hernia pain reveals 2 x 2.2cm ill-defined mass body/tail
    Oct 2...CA 19-19 of 65.7
    Oct 2 ...Upper EUS biopsy...invasion to splenic artery, others veins/arteries suggest no local invasion
    Oct 7...CA 19-9 drops to 51.7
    Oct 8...additional CT scan reveals body/tail soft tissue mass 2.5 x 1.4 cm, main duct dilated up to 1.1cm, no definite local invasion, possible spot near liver
    Oct 8...PET body/tail lesion SUV max 3.8, peripancreatic soft tissue inseparable from lesion and 4th portion of duodenum/proximal jejunum, no definite evidence of metastatic disease
    Oct 18...biopsy...mucinous adenocarcinoma in background of extracellular mucin, no mention of cyst
    Nov 5...FOLFIRINOX begins
    ...followed by radiation and hopefully surgery for distal/splenectomy
    Staying positive in the face of adversity.
    Take life one breath at a time and be grateful for every moment.

 

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