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Recurrence - be your own advocate

Kaleena's picture
Kaleena
Posts: 1975
Joined: Nov 2009

First of all, I want to thank all of you for all of the wishes that were posted about my recent recurrence.   Just want to let you all know that I am ok and will be taking steps to see what will be next.

I don't know if this would be considered my 2nd or 3rd recurrence.

Diagnosed Sept 2005 after a routine hysterectomy (Stage 3a, Grade 2)

2009 - positive biopsy with surgery in 2010 which only found a microscope positive lymph node

and now this positive biopsy.

 

Anyway, unfortunately I probably wont be able to have the MSI immunotherapy as I just saw my path report indicating that its MSS, not MSI.   I will probably get a call from my doctor's office next week as this is the weekend.   Now it will be when I will have the surgery.   The doctor wants to do it soon because right now I have a healthy section of rectum that can be saved and reconstructed.   He believes he can do all of this without the need of a ileostomy.    However, if they go in and the disease in more that it appears on scans, I may have to have an ileostomy.   It is slow growing so that is good but they don't want to wait too long.   If I don't do anything, I will eventually have a bowel blockage and probably need emergency surgery, so I don't want that.

We want to wait until after our vacation at the end of May.   Although my gyne/onc indicated I could have this done and be recovered by then to go on the trip.   But if I have to have a ileostomy, it will need to be reversed 6 weeks after surgery which requires another 3 day hospital stay and 3 weeks recovery.

BE YOUR OWN ADVOCATE.   In October of 2017, I saw a gyne/onc (who I no longer have) regarding my recent CT scan.  I hadn't seen him for a year and a half because he cancelled my appointments 3 times due to various things.   When I saw him at this appointment, all he did was read my CT scan to me and gave me a prescription for stomach massages.   He never did an exam on me.   Given we came 3 hours to see him and that even though the CT scan indicated a new small soft tissue mass and the fact that I was in daily pain - no exam.   So I sought out a new doctor who was local.   They read all of my medical files and I met with him.  At that time, he indicated that given the location of the mass and that the last biopsy was negative (2014), we would just watch and wait and get an MRI in 6 months.  However, I started having so much pain that I asked for my MRI to be moved up.   From there I had a EUS rectal with biopsy.   At first that indicated that it was negative, but upon reading the report, it did indicate that it may not have been the target area.  I was also referred to a gyne/onc who had her own pathologist reread the EUC rectal biopsy.   They saw something in a few of the slides which could indicate endometriosis.   Then I had a Gastrovue Enima which showed significant narrowing in my rectum which could be from the tumor or radiation.   Then I had the CT guided biopsy which found the endometrial adenocarcinoma. And finally another MRI which does show some progression from the last MRI.

Other than surgery, the only treatment I had was at the initial diagnosis (chemo and brachytherapy).

Sorry for the long explanation.   Thank you all for your thoughts and wishes.

((((Hugs!))))

Kathy

 

 

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

Kathy, actually I want to thank you for the long explanation and am glad you started a new thread on you.  You said something that made me think of my gyn onc.  He said he was only going to trust his own pathologist on any diagnosis as well.  Very interesting that your new doctor said something that sounded familiar.  

Keep us posted.  You know you are in my prayers.  I know both you and your husband have been through so much.

takingcontrol58
Posts: 243
Joined: Jan 2016

I am so sorry to hear of your recurrence after so much time since your initial diagnosis.

When I was first diagnosed, in Oct 2014, I was staged at 3B, Grade 3 adenocarcinoma.

Two months after my hysterectomy, I grew 34cm of new measurable tumors.  The
largest tumor was on my vaginal cuff/outer rectum- it was 5.1cm and caused
a little bit of pain when I sat down.

I had a total of 6 infusions of Taxol/Carbol, no radiation.

I started on metformin after 2 infusions; after the 3 infusion and
one month on metformin, that 5.1cm tumor shrunk to 1.7cm.
After an additional 5 months, the tumor was completely gone.
No cutting, no surgery.

What I am saying is would you consider starting metformin before
agreeing to a very unpleasant surgery?  I personally believe that
your body can heal tumors if you are targeting the factors that
made a tumor grow in your body.  Did your doctor run a full
genomic profile?  You said you were MSS stable.  But there are
many known mutations that metformin targets in endometrial
cancer and I was wondering if you knew all your mutations.
It is amazing how many things that metformin targets in the growth
and spread of all cancers and there are no cancer drugs to target
most of these factors.

Considering that you wouldn't proceed with surgery for a few months,
perhaps you could try the metformin then get a scan prior to getting surgery
to see if the tumor is shrinking on the metformin alone. It would be
great to avoid that surgery.

 

Takingcontrol58

 

 

EZLiving66's picture
EZLiving66
Posts: 1357
Joined: Oct 2015

I am so sorry, Kathy.  As a lot of us have found out, we have to be our own advocate.  I have read this carefully since we never know when it will be one of us who is showing No Evidence of Disease, will have a recurrence.  This stuff is so d*mn sneaky.  I have been taking 2000 mg of Metformin since my diagnosis.  My oncologist/gynecologist is one of the sponsors of the Metformin trial.  The last time I saw his PA in October, she said it is looking promising.

Please keep us updated on how things are going!! (((Kathy)))

Love,

Eldri

oldbeauty
Posts: 194
Joined: May 2012

I so admire how calmly and clinically you describe this saga.  It is inspiring.  Thank you for sharing.  What I find so frustrating is that we mostly don't know what is/is not signalling relative to a recurrence.  In your case it was pain, which is good in a way.  It's an attention grabber.  Your challenge was finding the right physician to take you on as a partner in your case.  Good work and good luck.  I'd say don't be too quick to cancel a trip, but you are the best judge.  Best wishes, Oldbeauty

cheerful
Posts: 245
Joined: Apr 2011

Hi Kaleena:

  I am so sorry to hear of your reoccurrence.  It sounds like you have a really good plan with your doctor.  I wish you all the best as you go forward with this in the next couple of months.

  I will keep you in my thoughts and prayers.

Cheerful

a/k/a Jane

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

Oh, Kathy, how disheartening. We sincerely appreciate you, reminding us to be our own advocate. As we go further out, from our initial diagnosis, remaining NED, it becomes easier to forget to advocate for ourselves.  Plus, I think we welcome not having to visit the doctor and take tests as frequently.  But, as your situation has reminded us, we must not get lackadaisical, but continue actively caring for ourselves. We shouldn't hesitate to get a second opinion, nor feel as though we're breaking our loyalty to our current provider.  I will pray the Metformin will be an option and effective and that a way transpires for you to take your vacation. Please, keep us updated on your progress and treatment.

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

Thank you for the update and the reminder that we have to keep on these things every.damn.minute. And, thank god it's slow growing, that's a glimmer of hope in all of this. Best always, B

Double Whammy's picture
Double Whammy
Posts: 2827
Joined: Jun 2010

You always seem to be right unfortunately.  Your reminder to be our own best advocate is welcome.  I hope you get to the bottom of this quickly and hope you can enjoy your vacation.  Dang!

Thinking of you,

Suzanne

evolo58
Posts: 293
Joined: Dec 2017

Well, for one thing, many gyno oncos will tell you they will not prescribe Metformin, and they do not bring it up unless you do. Many PCPs or endocrinologists will prescribe it, but not gyno oncos.

This is strange, because they definitely know about its potential in cancer treatment! My husband chatted with his PCP not too long ago, and she agreed that Metformin may play an important role in managing many cancers, including endometrial.

There is even a medical article or two here somewhere that describe how early tests are showing the potential of Metformin combined with other treatments in not only managing cancer, but actually possibly curing some variations, even in cases of recurrence. These tests are in the earliest stages, but show that doctors are indeed interested in the potential of Metformin in future treatment. It's been used for decades, not expensive to produce (yet), and many people can tolerate at least a lower dose well with manageable side effects (for me, the worst that has happened so far is that I find myself making a few more trips to the bathroom). 

Yet, a gyno onco or even most PCPs will generally never bring it up first. YOU have to. And that is just one example. Yes, you have to be your own advocate. unfortunately.

Hope you can get back to your regular life soon, Kathy. Even after all this time, this thing can be stubborn. And hope you can enjoy your trip!

HorseLvr's picture
HorseLvr
Posts: 102
Joined: Nov 2017

So sorry about your recurrence, Kathy. I hope the surgery goes well.

Violet123
Posts: 26
Joined: Nov 2017

Sorry to hear your news, and thanks for the important reminder to be our own advocate.  

I have been visiting this group regularly even before I joined, and have been traveling this journey with all of you ladies .  I wish we  were on a different path.  Hearing all of the stories and listening to the advice here has sure helped me through the rough spots.  I am currently receiving pelvic external radiation.   Then will be waiting and seeing where I stand in this battle with cancer. Thanks to everyone for their words of wisdom and advice. 

Sending hugs, prayer and hope your way Kathy.

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Be your own advocate. MD’s are required to provide “informed consent”, so that the patient knows all of the possible outcomes from treatment. I doubt if that happens most of the time. Many woman are just lost, in a terrible state of shock dealing with a cancer diagnosis. I know on a personal level as I can recall helping my sweetest and dearest friend cope with a cancer diagnosis two years before my horror began- bilateral breast cancer. I became overnight an “expert” on Her 2 Nue cancer. D@mn, I had no idea that this was a prelude to the breathtaking terror I would soon experience. Kathy, I have followed your story now for over four years, quietly rooting and cheering for you and your husband, hoping that all would be well. Like you, I am a stage 3a, but a grade 3. Kathy, please know how sorry I am to hear about your recurrence. You are strong, knowledgeable and supportive of all the rest of us coping with cancer. I have hurt for you and your husband and your family over the years: You have faced and coped with too much!  I have followed your story now for over four years, quietly cheering for you. Please know that I wish you and your family the most extraordinarily blessings. Thank you for sharing your story with us here.

Much Love, Cathy

 

Northwoodsgirl
Posts: 536
Joined: Oct 2009

Oh Kathy and Cathy, you both are amazing women and warriors dealing with this cancer. Just know that I am keeping you both in my thoughts and prayers ((Hug)) 

Lori

barnyardgal
Posts: 219
Joined: Oct 2017

Kathy, thank you so much for explaining your story. I love my team of doctors,but I have had to voice some questions and concerns on occasion. I can email all my doctors, which helps. I so agree with being your own advocate. That is important to remember.

I am so sorry you have to deal with a recurrence.

I'm 3a, grade 2, with garden variety (as my doctor reminds me) adenocarcinoma. So far I've had 5 treatments of adriamyacin/carbo (I was allergic to Taxol) with 3 more chemos. And then radiation. I was bummed I needed 8 chemo treatments instead of 6, but I want to kick this thing to the curb. 

Thank you again for telling your story!

janaes
Posts: 772
Joined: May 2016

Kaleena.  Sorry to here of your reacurance. I wish you well as you go forward. You sound really positive and i think that is great.

Hopeful162's picture
Hopeful162
Posts: 82
Joined: Sep 2014

Kathy, I have been reading your posts for quite some time and admiring your approach to everything that comes along.

As I have Type 2 diabetes, I have been taking high doses of metformin for over five years and was glad to learn it may very well have a beneficial effect on cancer as well. My gyn surgery involved a large uterine polyp, grade 3, which was removed with "everything else" in October, 2014. Since treatment all has seemed well, but you remind us it pays to be ever vigilant when it comes to our health. I certainly wish you the best; thanks for writing and keeping us informed of your situation.

Martha

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

Kathy, Thank you for updating us on your condition. I'm sorry that this has happened to you. I understand that recurrence is quite common in those of us with advanced cancer. I've had one recurrence and the cancer is still progressing despite going through two different types of treatment. I also have read that MSI actually is very rare. I was tested for it too, and I am MSS--which most of us are. So no Keytruda for me. I have been on metformin for a long time, changing to Glucophage the name brand this past year for better blood sugar control. Metformin reduces estrogen levels. Anyway, I wish you the best. My thoughts are with you.

rcdeman
Posts: 256
Joined: Aug 2016

Ugh, I'm so sorry to hear about your second recurrence, Kathy. This cancer sucks! :(

However, it's good that you are already proactively doing what you can to beat this cancer again. Stay strong!

I am praying for the best results and hope your surgery goes well. Please keep us updated!
Rebecca

Susie2's picture
Susie2
Posts: 16
Joined: Nov 2017

Kathy, I'm sorry to hear about your recurrence, and I'm sending thoughts of health your way. I've read through several of your posts since my dx of UPSC. I've been impressed by your strength and positive attitude through it all. Please keep us posted!  

Donna Faye's picture
Donna Faye
Posts: 252
Joined: Jan 2017

I am in awe of how the ladies on this site share in order to help others!  We are Wonderdul Wonder Women!

laura25's picture
laura25
Posts: 172
Joined: Mar 2011

Hey Kathy,

Checking in to see how you are and how it's going.  

All my best,

Laura

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

Good to see you pop up. Hope you are doing well. 

laura25's picture
laura25
Posts: 172
Joined: Mar 2011

Hey Connie!

I'm doing well thank you!  So good to see you also, I hope you are well!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

Agree with you, Connie.  It is good to see Laura

Kaleena's picture
Kaleena
Posts: 1975
Joined: Nov 2009

So sorry all about responding to all of your replies.   I am currently working 2 jobs but all is well.   My surgery is scheduled for April 23, 2018 and I go for a CT Chest scan on April 5th.  Not sure why not just an xray.

I was starting to feel pretty good and was wondering whether or not I really needed the surgery.  So I slacked off on taking my Motrin. - Big mistake.   It was a gentle reminder that I must have had my Motrin spaced out perfectly.   (every 12 hours).    

Anyway, thank you ladies so much!   Your positive thoughts/replies keep me going.

Love and hugs,

Kathy

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