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Thread: How this "Worried" forum helped me not to worry.

  1. #1
    Super Moderator Top User
    Join Date
    Dec 2011

    How this "Worried" forum helped me not to worry.

    I don't have cancer. I joined CancerForums several years ago as a caregiver.

    For the last two months, I've been having tests and scans and waiting for appointments with one specialist or another.

    Yesterday the doctor looked at me and said "Everything looks great. There's no evidence of malignancy."

    He sounded surprised. That was my first realization that he'd been pretty sure I had cancer.

    I was relieved, but I hadn't been particularly worried. Whenever I started to worry, I reminded myself of what we always tell people in the "Worried" forum. You don't have cancer until a doctor tells you you have cancer.

    Of course, things could have turned out differently. But even if they had, I wouldn't have changed the outcome by worrying.

    And of course, the doctor also said things that I can now parse to death at my leisure. Things like "I'm not an expert at reading MRIs" and "You'll want to tell your PCP to check up on this every year." But I don't think I'll bother trying to suss out a meaning that wasn't there. I'm certainly not going to start worrying at this point.

    And for a third "of course", in my two months of bouncing around hospitals and clinics, I encountered many people more deserving of my compassion than myself.

    So, to everyone who's found their way here to the "Worried" forum-- good luck. I hope things turn out for you like they did for me. It's very likely they will. Make sure you get everything checked out that needs to be checked out. But while you're in the process of doing that, do yourself a huge favor and

    don't worry.

  2. #2
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Really well said, GBMsibling, really well said. I am very glad to know that you have a clean bill of health, that is great!

    Thanks for this. I will only add that, even though I do have cancer, I have learned how to not worry. If you live with the disease long enough (I am seven years on at this point) you learn to take things one day at a time and to accept that what will be will be. Life is too short for all of us, no matter how long we live, so it is best to simply relax and enjoy the ride no matter where it takes us. It is a lesson learned from a few wonderful people on this Forum who have passed on but who were simply amazing in their ability to enjoy life right to the end. I aspire to be like them.

    Good health,

    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 67
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.
    December 2017 - Biopsy of external iliac node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.
    March 2018 - Copanlisib failed, treatment stopped 3/28. New plan is to go to Dana Farber on 4/16 for case review and treatment recommendation.

    May 2018 - did not qualify for clinical trials at Dana Farber. Tumors need to get larger to be considered. On consultation w/Dr. Armand at DF and my onc, have decided to take a break from cancer treatments. Will have a biopsy of the mass in my sinus discovered in scan at DF and to get the aneurysm repaired as it has developed a potentially catastrophic penetrating ulcer. Surgery scheduled for 7/12.

    September 2018 - biopsy of mass in nose shows transformed DLBCL throughout. Assessing options for this negative development.

    October 2018 - started 6 to 8 cycles of R-CHOP. Goal is to get to full remission to open up other options.

    February/March 2019 - PET shows four hot spots following R-CHOP. referred to Dana Farber for stem cell transplant. Pre testing all good, accepted for Auto Transplant. Will begin inpatient process about April 1.

  3. #3
    Administrator Top User lisa1962's Avatar
    Join Date
    Jan 2013

    I echo what wise Kermica has said and also relieved that your results ruled out a cancer diagnosis.

    When we are affected by cancer with a loved one, when we have a scare of our own, it seems to become easy to jump to thoughts of cancer but with that said, by doing so we miss out on the beautiful everyday things life has to offer. I guess that's in our nature.

    I hope this thread, so eloquently written will be found by many coming here to this supportive community and provide them with strength and ease for their worries.

    Thank you for sharing with us.


  4. #4
    Senior User
    Join Date
    Jan 2014
    It is so hard not to worry, and that is so nicely said.
    Vulvar mucosal melanoma, superficial spreading type, stage I-II, depth 1 mm with regression
    Radical right-sided hemivulvectomy, clitorectomy and bilateral sentinel lymph node biopsies, May 2013, lymph nodes clear
    PET CT, NED, July 2013
    Partial left hemivulvectomy/reconstructive surgery Oct 2013, found melanoma in situ on pathology, out to margins
    November/January - Underwent 9 vulvar biopsies to try to locate the MIS for surgical excision, unsuccessful
    May 2014 - Third vulvectomy/second left hemivulvectomy for wide local excision of MIS, MIS not identified on pathology
    PET CT, still NED, June 2015
    PET CT, NED, June 2016
    No sign of recurrence, January 2019

  5. #5
    Super Moderator Top User
    Join Date
    Dec 2011
    Thanks Kermica, Lisa and Cheri.
    Good point, Kermica.

  6. #6
    Senior User
    Join Date
    Jan 2015
    Very well said. I was only a caregiver and can't imagine the stress people go through before diagnosis - Rio was a bit of an odd case in that he really wasn't scared or concerned at all. Until the last possible moment he really believed there was an answer for everything that wasn't cancer. I love his optimism. I think it can go either way, and I am the same as you - for some reason, now that Rio has gone through it (with me pestering him the whole way lol!) I have stopped worrying about cancer all the time. Forums like this have made me see how prevalent health anxiety seems to be and the advent of the internet certainly doesn't help. A few months ago I was having some odd symptoms and my doctor sent me to see specialists (at the hospital that houses the cancer centre Rio was treated at, so I was going solo - Rio can't stand the sight of the place) and I didn't realize my GP was concerned about malignancy until I thought to ask (after my mom asked me). No sense in wasting today worrying about tomorrow!
    Boyfriend Rio diagnosed NSHL 29th July 2014 (24 years old)
    Stage IVBSX (~15 cm primary tumour)
    eBEACOPP 30th July to 3rd December, 2014
    Post TX PET 12th January, 2015
    Results 20th January, 2015
    Complete metabolic response. Rio's remission has begun!

  7. #7
    Administrator Top User Didee's Avatar
    Join Date
    Jun 2010
    Ha! Well written Sib. I was wondering myself whether to write a post like this here during the last few weeks. Similar situation with my husband, still no answers though but we still are going through the process.

    I am so glad things have turned out well for you. I HAVE had cancer, now it seems like my husband MAY have too but as said, not all info is in yet. Whilst a very concerning time I did not feel the need to write about all the concerns on our worried forum as so very often things turn out much better than expected and no amount of worry or anxiety is going to change what will be.

    Great thread, Sib. I think it should be a sticky, get rid of another sticky that may not be so pertinent if there are too many here.

    You have made my day.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  8. #8
    Super Moderator Top User
    Join Date
    May 2011
    Just noticed this thread now. Sorry to hear you had to go through this Sib - and delighted that it turned out to be nothing.


    Glioblastoma IV, frontal lobe - Dx March 2011. Treated with standard Stupp protocol
    Recurrence August 2016 (at 5 years PFS). Surgery August 2016, rechallenge with TMZ with immunotheraphy (nivolumab)

  9. #9
    Super Moderator Top User
    Join Date
    Dec 2011
    Thanks everyone. Thanks Nikos. Me too!


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