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My Recurrence Journey

els19
Posts: 90
Joined: Jun 2014

It was seven years ago that I was diagnosed with UPSC stage 3 and I really thought I beat it when severe pelvic pain sent me to my local ER last August. The CT scan there showed 3 enlarged pelvic lymph nodes. I notified my gyn/onc and he immediately ordered the scan results and sent me in for a CA 125 which was in the 600's. Within ten days of that ER visit I was back in chemo and I just completed my 9th infusion of carbo/taxol. My recent CT scan showed that 2 of the lymph nodes have shrunk to normal size. The third one shrunk a cm and is now just under 2cm. The scan showed no new metastatic disease. My doctor now wants me to take a break from treatment to strengthen and heal. We will repeat all tests in three months. I still have neuropathy in my feet from the 2014 treatments and I iced my feet and hands through all nine treatments and I have no increase in neuropathy. It was tough at points because my infusions were long due to slow infusion because of my initial reaction to taxol. But icing was so worth it! I also developed anemia and had problems with low wbc but with an iron supplemen added and a change in diet my recent tests showed all blood levels in normal range and I'm no longer anemic. My CT scan also showed a possible DVT in my leg  and an ultrasound confirmed it. I had no symptoms at all. DVTs are not uncommon in cancer patients and I am so lucky it was found and I'm now on Eliquis.
When my doctor first suggested a break from treatment I was not happy with the idea. But after 9 chemos I'm exhausted. I'm lucky to have a really good gyn/onc who explained his reasoning and now I'm ok with the idea. I've realized I had to change my mindset. I'm no longer searching for the cure I was seven years ago. Now I'm learning to live with cancer as a chronic illness. My goal now is to build up strength and to be ready for the next step in treatment. I'm hoping with some luck and the grace of God, I will be able to show others that you can live with a recurrence.  

yetti's picture
yetti
Posts: 42
Joined: May 2019

Dear Els. 19. Im. a survivor. of endometrial cancer stage 4B Figo 2.    I was Dx June 2018.  I had carbopatin and taxol  6 rounds. hair loss,  had it shaved bald👨‍🦲 devastated !  I had lap hysterectomy in Jan 2019. The. 3 more chemos. With Avastin. And a 2nd. Opinion. At CTCA. Who ran their  own labs and ct scan  and declared me NED. Which was on April 18 2019   I'm still checked Avery 3 mths. Ca 125 and ct scans up at CTCA in GA. I'll be NED. 2 years. On April 18 2021 !  It is possible. And hope and 🙏 for the best for you in your cancer fight !   I don't know what I would do if I had a reccurence !  Not sure I would do chemo. worse experience in my life. And I won't do radiaion. I'm 59. So im planning on bucket list. And to be kept comfortable. And then to be buried next to my younger sister who we lost to cancer in 2003 !   

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1734
Joined: Jun 2015

ELS19, Thank you for your great post! So happy to see that you responded to treatment and are now able to take a break from it.  Sharing your journey is so critical to help the next person identify and deal with a similar experience. I'm sending you good vibes and loads of support for healing and continued good news for your next 3 month testing.

Love and Hugs,

Cindi

BluebirdOne's picture
BluebirdOne
Posts: 370
Joined: Jul 2018

I was wondering how your treatments had been going. Thanks for checking in. It reminds those who are many years NED to be vigilant and prepared. The only good thing about a recurrence is that I think we are prepared for what is to come, unlike when first dx when we had to learn and endure treatment while we are still in a state of shock. Good luck to you and keep us informed.

xxoo

Denise 

cmb's picture
cmb
Posts: 625
Joined: Jan 2018

Els,

Taking a break for now with a recheck later sounds like a reasonable plan, given that the latest treatment appears to be working for you. As I recall, you also had a good response to treatment originally, which bodes well for your current recurrence.

I'm not sure that any of us with the aggressive forms of uterine cancer ever really feel "cured," but we can all hope for sustained periods without the need for treatment. 

Yetti, I hope you continue to do well too.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2863
Joined: Mar 2013

els, thank you for coming and letting us know this part of your journey, from what your symptoms were to all you have been doing.  It sounds like you earned a break and no more neuropathy is great! 

Praying for a fast recovery on that DVT.  That can be as scary as the word 'cancer' so let us know when that is over.

Hugs dear one.

 

alicia2020
Posts: 90
Joined: Sep 2020

Thank you, Els19 for letting us know how you're doing. I'm so sorry you've had this recurrence, but your attitude and strength are wonderful. And it does seem like a good idea to give you a chance to regain your strength before you go through more treatment. I'm glad they spotted the DVT and are able to treat you.

I am thinking of you and praying for your health.

Hugs, Alicia 

 

 

zsazsa1
Posts: 553
Joined: Oct 2018

UPSC is such a damned sneaky disease!  Recurrence after SEVEN YEARS????  You're amazing, in how you are weathering the treatment.  And I'm glad to hear that the icing prevented the neuropathy from getting worse.

You might want to discuss with a radiation oncologist at a major cancer center, whether proton radiation would be of use, in this case, since it sounds as if the sites are small and isolated.  Might it be that proton beam radiation could be used in a pinpoint manner to irradiate only the exact areas where the recurrence happened?  Or laparascopic surgery an option now, to try to remove the lymph node areas where you recurred?

I know that when it comes to UPSC, there's always a chance of it coming back.  But since the recurrence site was so isolated, and since it's been reduced by the chemo, perhps lap surgery or targeted proton radiation would give you a longer remission, at this point.  It's certainly worth a discussion.

els19
Posts: 90
Joined: Jun 2014

Thank you all for the kind thoughts and prayers. I was so focused on the cancer that when I was told I had multiple clots in my leg it was almost secondary. I was told they will take months to clear and will most likely return. The break is worrisome because the cancer and tumors can grow. I've decided I can either drive myself crazy worrying about the cancer and DVTs or just do the best I can to get healthy and stay positive. I'm still very fatigued right now. 
Zsa Zsa, thanks for your ideas on therapy. I have discussed both options with my doctor and he didn't think either was a viable option but maybe I need to revisit it.  I do go to a major cancer center.

Lyn70
Posts: 12
Joined: Jan 2021

Dear Els, 

Praying for your recovery from DVT and rest for your body from treatment. TY so much for sharing your reoccurance with us. I love what you said about living with cancer. I find peace in that statement myself. This my second cancer. 7 years ago I had Non Hodgkin's and now uterine stage 3c1. The first one shocked me, this one has seasoned me to thankfulness and joy in living each day. I do have a question anout CA125. I never had one to my knowledge. I am heading toward treatment #5 of 6 with radiation to follow. 

els19
Posts: 90
Joined: Jun 2014

The CA125 is a cancer blood test and marker for ovarian and uterine cancer. It is accurate for some but not all. Over the last seven years it's been a very accurate marker for me. Some get numbers in the single digits when they're NED but mine has never been lower than the teens. And I maintained a number in the lower twenties for over five years. With my recurrence my number was 605 and each chemo lowered the number. I had the test regularly over the years as an increase in the number could indicate a recurrence. Other illnesses and inflammation can cause it to increase. A diverticulitis attack once caused a moderate increase in mine but a follow up CA125 showed a decrease.

cmb's picture
cmb
Posts: 625
Joined: Jan 2018

As Els wrote, CA125 is not a marker for everyone. Mine was 18 before surgery and went to 20 after surgery and before chemo. My doctor only runs the test every couple of years. It was 9 after treatment, 8 two years later and 7 in February.

It's always nice to see the numbers go down, but since it was in the normal range when I had the tumor, it really isn't something that we can count on as an indicator of a recurrence.

els19
Posts: 90
Joined: Jun 2014

Good luck with your treatment, Lyn70. It must have been hard to have been diagnosed with a second cancer. You are so right, my original diagnosis also taught me to be thankful and to find joy in everyday. I hope all goes well with your radiation. I found that taking a probiotic helped when I had mine. Sending only good thoughts and prayers your way. 

Quilter_1's picture
Quilter_1
Posts: 109
Joined: Mar 2019

I'm so sorry to hear about your recurrence, but, it sounds like you have an amazingly positive attitude.  I wish you the best and pray for a positive outcome.  My biggest fear, after 2 years of NED, is that I will have a recurrence.  I don't let it consume my thoughts, but, its always there.  You have such a wonderful outlook.  

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

I'm approaching 5 years since end of treatment.Reoccurance is always in the back of my mind since I was diagnosed 3C with some clear cell . I think my doctor will release me then which I will probably challenge with at least a once a year visit withCA125 and possibly a scan. Somehow 5 years is supposed to be magical, but I know of others who have hadreoccurance after 5 years. I prayI don't but if I do I hope to have your attitude and learn to live with cancer as a chronic disease.

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