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Thread: Just diagnosed

  1. #1
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    Just diagnosed

    I was diagnosed with Stage 4 colon cancer in Oct. I have one tumor encircling my lower bowel, another 60% it has spread to 2 lymph nodes, one of my seminal vesicles and they just found 2 8mm nodules in my lungs.
    My colarectal surgeon tells me my 'tumor load' is light and that chemo for lung treatment is typically very good....meaning the lungs respond well.
    From what I've read and been told, you can't rely on statistics because this type is highly individualistic. My surgeon refuses to speculate on my prognosis saying that statistics are meaningless and it ALL depends on how I particularly respond to chemo.
    As you can imagine, I'm terrified, crushingly depressed and a bit numb. I'm 53 and my 4th anniversary is in Dec. My second marriage and with this one I finally had children. I have two girls, a 1yo and 2.5yo.
    The diagnosis was a kick in the colarectum...

    I feel that every doctor I talk to is guarded, hedging their bets and reluctant to really give me info. I know this is highly individual but it's not helping me.
    I go for a lung biopsy 11/18. I was to go get 4 rounds of 2 drug chemo then 5 weeks of radiation. This has now changed to only chemo. I'm really hoping that my biopsy comes back as something encapsulated as I spent years in ceilings with fiberglass...but I am not hopeful.

    That being said, I'm looking for some encouragement, success stories, opinions, things to look out for, observations or advice.
    It's been a month since I was diagnosed and I'm very surprised I'm still not getting any treatment.
    Last edited by Unshriven; 11-08-2019 at 05:10 PM.

  2. #2
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    Hiya Unshriven, welcome to the forum, but I'm sorry you are here. Cancer is an ugly thing, but you've come to the right place.

    I wish you luck on your treatment, and your doc is right. Prognosis depends on how well you tolerate the treatment.

    I was diagnosed with stage 3b rectal cancer in Nov. of 2017... I just got my first scan since surgery and they gave me an all clear. Officially in remission and no evidence of disease. AND I'm 54... So us old farts can do it.

  3. #3
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    Hi. I know this is all overwhelming. Try if you can to just take a deep breath as there will be lots of things you'll have to do. At times, you'll be running over 100MPH and then things will come to a crashing halt while you wait for certain things to happen....the whole hurry up and wait. When I started this wretched journey, it was a month after I had made the announcement to friends and family of my engagement. And all of this happened days before Christmas. Try if you can to seek out any support groups in your area. It'll help to have someone who understands from a personal experience level what you're going through. The oncology clinic you're going to/will be going to should have a social worker to help you out. There are other organizations if you're in the US that can pair you up with a buddy to also provide support.

    Since you're Stage 4, it is absolutely imperative you make sure they figure out the genetic makeup of your tumor. This will dictate what chemo or immunotherapy options you will be eligible for. An example of this is if you're KRAS Wild, Erbitux would work well for you. Another example is if you're MSI-H. If so, you have options with immunotherapy with very positive results.

    Again, I'm sorry you have to join this club no one wants to be a part of. Hang in there. While I'm not stage 4 (currently as far as I know), I've had two incidents with cancer both as unique primaries: Stage3b colon cancer and Stage 0 appendicial cancer. And currently dealing with 3 years of abnormal CEA numbers (tumor marker). But I'm still here after my first diagnosis in December of 2012.

  4. #4
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    Thanks, I was looking for success stories. Were it only me, I'd be off to Bangkok with a laugh. But having 2 young one's it's been a bit crushing. I'm hoping for the best. One thing that does surprise me is that no one really seems to be in a hurry...

  5. #5
    Top User mojo's Avatar
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    Hi unshriven. Sorry to hear about your cancer diagnosis. I guess I’m a little puzzled are you getting chemo now? If so possibly they are trying to see How the tumors react to the chemo therapy? If you’re not getting any chemo therapy at this point I think I’ll be talking to the doctor and ask him why. When my husband was first diagnosed with the first cancer I guess I push the envelope on everything I was his advocate. He was rather in a state of shock. Just wondering I don’t quite understand I’m sorry. Wishing you the very best to you might read a few of the other posts I think there was someone that posted the other day about being NED after being in stage four. Best wishes. The title is hope read that posting
    Last edited by mojo; 11-09-2019 at 08:04 PM. Reason: added

  6. #6
    One of my sister in laws had colon cancer, they put here on chemo- cured her. No surgical resection, no osmotic. Lost some hair, but it grew back.
    Nov 2013 PSA 4.2 Biopsy Jan 2014- 1 core positive, 20% Gleason 6, doctor highly reco'ed robotic RP - 2nd opinion at UPMC April 2014, put on active surveillance. 2nd biopsy Feb 2015, results negative. PSA test Feb 2016, 3.5. 3rd Biopsy Feb 2016. 3 positive cores less than 5%, Gleason 6. Octotype DX done April 2016, GPS Score of 24--rated "Low risk". PSA test 8/2016, 3.2. PSA test 1/2018 2.2 (after 7 months of proscar) PSA test 7/2018 2.3, PSA test 7/2019 2.0


    DOB 1956, in Pittsburgh, USA

  7. #7
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    Quote Originally Posted by Unshriven View Post
    Thanks, I was looking for success stories. Were it only me, I'd be off to Bangkok with a laugh. But having 2 young one's it's been a bit crushing. I'm hoping for the best. One thing that does surprise me is that no one really seems to be in a hurry...
    I don't know where you live. But if you're in the US, have you sought out a major cancer center such as Memorial Sloan Kettering, Mayo Clinic, Johns Hopkins, or MD Anderson?

    Where are things at the moment?

  8. #8
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    Quote Originally Posted by Southsider View Post
    One of my sister in laws had colon cancer, they put here on chemo- cured her. No surgical resection, no osmotic. Lost some hair, but it grew back.
    I don't want to be a downer on this. I recognize there has been instances of spontaneous remission, things which many have attributed to a higher power/faith, etc. But from all the years I've been part of the club no one wants to be a member, I've never seen anyone be cured by chemo therapy alone. The goal and so far the only officially recognized treatment to get to a cured status is surgery. However, there has been a person who so far has been cured but with a clinical trial utilizing an immunotherapy technique at NIH. Here's the thread created by the recipient of the treatment:

    https://coloncancersupport.colonclub...hp?f=1&t=49736

    She was also featured on 60 Minutes.

  9. #9
    Moderator Top User Doug K's Avatar
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    Unshriven,
    as many have expressed, welcome, sorry you find yourself here. Come back and check in, find out who might have posted to you, and let us know how things progress. As for stage 4 and prognosis, I agree there are highly researched and recommended treatments and getting to a center or location where there is a reputable cancer treatment center is helpful. As for the timeline.... depends on nature of the cancer what they know about your cancer and the treatment plan your treatment team puts together for you. All of this does take time.

    I was diagnosed in August, had chemo and radiation in October -November ... rested the colon and had surgery in January. Then a followup chemo February-April.

    I am a member of a support group at the hospital where I was treated, we have members who are 10, 15 and more years after a stage 4 diagnosis... as others point out... it is a very individual disease and each reaction to treatment is different for each person. I wish you well, come back and ask your questions.

    One other thought, right now is a good time to try to get yourself in as good a physical condition as possible. My go to plan was the local mall, good all weather location to walk and they let walkers in at our mall an hour before it opens.

    Good luck to you keep you strength up. I recall becoming sensitive to all the references we have in our culture to our butts... .... hang in there.

    doug
    MyJourney:
    August 2004 Colonoscopy Clear
    June-July 2013 Abdominal Discomfort Upper Abdomen X-ray, UltraSound, CTScan all clear
    8.23.13 Diagnosed 5cm tumor on rectum wall: adenocarcinoma @age 66
    Aug-Sept2013 Met with Surgeon,Hematologist and Radiation oncologist
    Oct.-Nov.: Xeloda concurrent with radiation: 25 doses
    November CTScan, MRI and surgeon scoped: Tumor gone, scar tissue
    1.6.14 Surgery LAR: Rectum removed, sphincter remains: Pathology: no lymph node,
    Tumor downgraded from Possible T3 to T2
    Feb. - April Chemo:5 FU and Oxilaplatin:6 infusions over 14 weeks
    9.4.14 ColonoscopyClear,CT Clear
    Dec.14 Follow up BlWk +,CEA .9
    Mar.15Follow up BlWk +,CEA .6
    June.15 Follow up BlWk +,CEA .7
    Sept2015Followup BlWk + CEA .7 CTScanClear NED
    Dec2015SurgicalHerniaRepair
    Sept2016Followup BlWk + CEA .7 CTScanClear NED
    Sept-Oct2017Followup All clear NED
    Sept-Oct2018CTScan+Clear Bldwk+
    Mar2019Bldwk+NED
    Continue ColoRectal Support Group monthly

  10. #10
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    Some updates.

    I had a lung biopsy of 2 small nodules which showed up on the PET scan that turned out to be rectal cancer. 8mm? My surgical oncologist told me know to hand my hat on that as my prognosis is almost exclusively dependent on how I respond to chemo. My oncologist called me with the results and I relayed this to her. She said that it was generally true. She said "we'll have to see how well you respond to chemo to see what to do or if we're just going to leave you alone". I thought that was damn cold and a bit terse.
    She was very matter of fact and showed no empathy nor offered any hope or mentioned any optional treatments if chemo doesn't work. Almost like she couldn't be bothered.
    At what point do you start looking for another doctor?

 

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