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Thread: Full Staging Final Diagnosis

  1. #1
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    Full Staging Final Diagnosis

    Hello

    After encouragement from the moderator I am starting my thread. Just to give a little background, it started for me in 2013 when my doctor was reviewing my ultrasound results for a hernia I had and noted that there was a cyst on my right ovary. We decided to monitor it's progress, but early on there must have been some concerns as I was referred to a oncology gynecologist. Fast forward to 2017 where we remove the cyst, ovary and omentum. Once the surgery was done we received good news...benign! When I meet up with oncologist 4 weeks after surgery I was informed that I had Stage 1a mucinous ovarian cancer and that they would like to proceed with full staging. Next steps are gastrointestinal review and hysterectomy along with removal of appendix.

    To put things into perspective of where my head is, I am retiring July 31 and starting a new phase of my life. Where this pending health concern has put me in an emotional Rollercoaster ride, I am trying to stay positive that all will be good.

    My second surgery is scheduled for Aug 16th. I'm a little frustrated because I finally feel like I'm back to my old self from the April 26 surgery and I have to go through it all over again. At least this time I won't have to go on medical leave and can heal @ my own pace.

    Keeping my fingers crossed that the results in Sept are favorable.

  2. #2
    Moderator Top User jorola's Avatar
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    Hi there,

    Glad you did start your own thread. Congrats on retirement! I agree - take your time on healing but ensure you continue to maintain a healthy balance of exercises as you can manager as well. But no you will not be rushed either.

    It seems like you were still caught in the early stages which is good. Yes surgery is not fun but once you recovery you can go have fun with that retirement!!!!!!

    Please keep us posted on how you are doing. I also sent you a private message earlier. You will see the "notifications" box in the top right of the page. It will be a darker blue

    Jodie
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED - no evidence of disease
    Aug 2019 - 5 yrs NED and discharged from cancer clinic!!!!!

  3. #3
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    Hi Jodie Thanks for the retirement wishes, it's very exciting to start this new chapter of my life. If I recollect correctly you are a fellow Canuck, correct?

    How have you found the oncologist in Canada to be? Where my early indications have been positive thus far I was curious about whether I should have gotten a second opinion before going to full staging. Maybe I'm being paranoid but I just didn't want to leave anything to chance.

  4. #4
    Moderator Top User jorola's Avatar
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    LOL yep I am in Alberta. We are very lucky to have the Cross Cancer Institute in Edmonton. It is world class. We personally has zero concerns we hubby's treatment team. They saved my hubby's life. It is very difficult to get a second opinion as you have to get a release of care and wait to see another oncologist. Looks like you are in the heart of doctorville yourself. Some of the best doctors in Canada are where you are. I would think you should have no problem either. Honestly if you keep asking any questions as they come up and they take the time to explain and you are satisfied with the answers you will be ok. Do you have a good GP? A good GP will also help to monitor things and ensure you are getting good care. Yes it is nerve wracking though. Get a hobby or two- something to keep your hands and mind busy if you don't already have one or some!
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED - no evidence of disease
    Aug 2019 - 5 yrs NED and discharged from cancer clinic!!!!!

  5. #5
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    Congrats on retirement. I'm also in early diagnostic stage with abnormal ultrasound but normal CA125. Scheduled for ovary/tube removal Aug 9. Had uterus removed in 1987 at age 32
    Surgeon is optimistic about laparoscopic procedure but also prepared for open if necessary. It is an emotional ride at the moment waiting for final outcome
    Did you have a normal CA125?

  6. #6
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    Hi Vdawn

    Thanks for the retirement wishes...one more day to go!

    Sorry to hear about your situation and hoping the best for you. I am keeping a positive outlook that our situations will be caught early and resolved. Regarding CA125, where I haven't had many tests for it I did note that it was in the 'normal' range so the only indication for the surgery was my ovarian cyst.

    Your surgery is coming up soon where I hope you don't have to have the full surgery. Laproscopic has an easier recovery.

    My next procedure is a gastrointestinal review on Aug 1st. I fondly refer to it as the 'night of 1,000 waterfalls'.

    Please let me know how your surgery goes and I am wishing the best for you.

  7. #7
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    Hi Jodie,

    It is official, I am now a retired woman!

    Thanks for the reminder about my GP. Yes, I have a wonderful doctor who is very thorough. It made me realize however that I haven't seen my GP since my initial diagnosis in May. My oncologist has been sharing all my info with the Doctor, but I haven't discussed this information with him yet. I am a little uncertain about the roles of my GP versus the oncologist. Do you have any recommendations of how to approach....what kind of health concerns go where?

    Thanks

  8. #8
    Moderator Top User jorola's Avatar
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    Congrats YAHOOO!!!!

    As for how to approach - with our GP, when hubby was sick, it was simple - we were in there anyway for something at least every month and we just talked about everything. Most times the GP would bring it up first as he got all of Mick's reporting online and then went through it with him to make sure he was comfortable with understanding it all. Also we were super lucky that our GP would just stop by our house once in a while to check on Mick. Ya i know - unheard of but that is the kind of dr we have have. We love him to bits.

    With your dr I would make an appointment and just say "Hey since i am going through this i was wondering if I can also use you as a sounding board? Can I come see you every 2 weeks and go through things with you?" I bet your dr will be fine with that.

    Mick's dr would also send his oncologist emails with anything he was doing so everyone was always on the same page. I am sure your GP will do the same as it is important each other knows what the other is doing.

    Again congrats on the retirement. Once all this crap is done you will actually have to go enjoy it. Try to do some fun stuff when you can anyway!

    Jodie
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED - no evidence of disease
    Aug 2019 - 5 yrs NED and discharged from cancer clinic!!!!!

  9. #9
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    Jul 2017
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    Hello Had my gastrointestinal review yesterday. Based on the 'initial' results everything looks good and we can proceed with surgery . The biopsy results should be back in a few weeks. It was a very positive appointment and I felt like my normal self for the first time since May. The Dr. even expressed his desire to assist in handling my IBS symptoms in the future. Now we have one more hurdle to jump and if things go as well as yesterday...things are looking my way. 😊

  10. #10
    Moderator Top User jorola's Avatar
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    hello Ingrid,
    Congrats on a successful initial consult. It always feels good to start things off on a good note doesn't it. May it continue on this positive path for you.

    Jodie
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED - no evidence of disease
    Aug 2019 - 5 yrs NED and discharged from cancer clinic!!!!!

 

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