UPDATE ON MY MOM

jzona, welcome to the board.  I am sorry that you have to be here, but there is a wealth of information here from women who have been through just about everything possible with this disease.

It is true that uterine cancer cannot be properly staged until after surgery, and it is not uncommon to have both the stage and/or grade changed afterwards.  However, I am a little surprised that there were only 3 rounds of carboplatin/taxol... usually there are six.  Perhaps your mom's kidney/liver disease played into that decision.  What kind of radiation did your mom undergo?  Internal or external?

In any case, if your mom is feeling healthy and strong, what the heck is your doctor doing recommending hospice?  Frankly, I'm not sure hospice would even consider her!

There are lots of other things to try and I am hoping that the second opinion you get is a lot more hopeful and helpful than what you have received so far. It sounds to me like your mom needs a new oncologist. When will you receive the results from the tumor board?  Was this at a cancer center?  

I'm with Chris and Kaleena - second opinion!  Especially if you say your mum is FEELING GOOD.  Go and fight!  She needs you to help her as an advocate.

Please get your Mom's medical records to have for her use and whomever is giving the second opinion. You will need to sign a Telease of Information to get them from the hospital and clinic medical records department. Get all office visits, consults, images /radiology scan reports, pathology reports, procedure reports , lab tests and results, medication records, preventive screening reports, surgery reports, nurses notes and vital sign flow sheets. At the very least the oncologist should have talked about clinical trials that may be available. Also check out the website "

NCCN " You can register and see the standard of treatment for each type, stage and grade of cancer. Keep us posted as to what you can find out. ((Hug)) Your Mom is blessed to have you as an advocate daughter! 

So glad you are getting a second opinion for your Mom! She is lucky to have you with her. Please come back and let us know what you find out. Like others have said, there are many treatments available. Love and Hugs, Cindi

Jzona,

It sounds like you are now with a major cancer center (UPMC In Pittsburgh? - that is up there in the top 25 of U.S. cancer centers). Very glad to read this! I have been appalled on several occasions by the backstories I've read on this board, none more so than your mother's story. Kaleena is also correct - if what you are hearing doesn't sound or feel right, get to another center. Northwoods is right: gather ALL diagnostic reports, pathology reports, and ask for CDs of all scans. That's my routine: please provide me with a paper copy of my bloodwork, of my chemo drugs and dosages from each infusion. I have CDs of my scans (I go to the radiology desk the next day to retrieve). Your doctors can request and receive too, but you save valuable time by having a folder with you.

I am 65 (66 in August). I was Stage 1B, Grade 3 after my surgical staging, November 2015. CT scan (no radiographic evidence of disease) in December 2015, prior to beginning six rounds of paclitaxel-carboplatin, followed by three rounds of brachytherapy. CT scan (June 2016) at conclusion of treatment (no radiographic evidence of disease). November 2016 I felt bloating and pressure (eerily like I felt immediately following my hysterectomy - like my vagina (what was left of it) and rectum were going to fall out). CT scan (confirmed one week later by a PET/CT because my onc was so shocked) showed mets to my liver, lymph nodes, and a peritoneal tumor about 6 cm x 3 or 4 cm. Shock, devastation, fear, sorrow - certainty I was now a goner with only a few months to live. My oncologist, and most especially his nurse practitioner, said far from it. They had a plan, I said I needed a second opinion, they encouraged it, asked me where I wanted to go because I would get in more quickly with them making the request. After meeting with an onc at Fox Chase* (Philly), she and my team back home (Central PA) conferred, and chemo was started immediately after an echocardiogram ensured my heart was in good shape - doxirubicin liposomal plus carboplatin. At my three month mark, CT showed no radiographic evidence of disease in my liver or my lymph nodes, and that [big, HUGE to me] tumor had shrunk by more than 60%. A fabulous report, we all agreed, while at the same time acknowledging that chemo won't eradicate my cancer. It is still there. We all understand that the chemo will knock my cancer back, but no one knows for how long. Grade 3 is known for being particularly chemo-resistant. I am happily surprised by my results so far, grateful to be here and remarkably sanguine about it all. Very unusual for me! There's only so much worry and anxiety a body can hold, I guess.

The Fox Chase onc also ordered a complete tumor profile (from Caris Life Sciences; there are other companies that do this, Foundation One has been mentioned frequently on this board). My report detailed my tumor's mutations, and therapies that they categorized as "of potential benefit", "of undetermined benefit", and "no benefit". Therapies can include PARP inhibitors, checkpoint inhibitors, hormone therapy and immunotherapies. There is a discouraging side to the "personalized or precision" therapies we hear so much about: damn few of them are available as approved therapies to endometrial cancer patients. I may have something available to me in the PARP inhibitor category as a third line of treatment, but I would need to seek permission and/or compassionate use as none of these are currently approved for my cancer.  My Fox Chase doc - all of my docs, really - are encouraging: new therapies are coming very quickly now. Will ford that river when and if I come to it!

Long story short - your mother has options, you are in the right place to learn about them, and to receive guidance and CARE. One foot in front of another, one day at a time. Look forward. Deep breaths. Sounds corny, doesn't it? But it isn't.

One other recommendation, probably seconding another comment - if your cancer care center doesn't provide a scribe for your appointments, consider taking along a third person to take notes. Or record the session on your phone. It was very difficult for me (as the patient) to focus. My husband was with me - he is a manager in the chemical life sciences analysis industry - and asked the right questions. My sister was on the phone - she is head of a sonography unit at a hospital in Virginia, an excellent background to take notes and ask the questions. I am truly fortunate to have the support network I do.

Beebster

*Fox Chase was very happy that I had those CDs with me! I had also scanned and emailed all of my "reports" to a patient navigator a couple of days before my first visit.

jzona said:

Thank you

Thank you so much.  Yes, nothing seems just right.  When I lay out all of the facts, it seems there are a lot of missing pieces.  My mom had internal radiation.  The new oncologist we visited, from the best facilty in Pittsburgh, said he would have scanned her after grading and prior to starting treatment.  Additionally, 6 treatments is standard.  I wish I could now go back and ask her former oncologist so many questions.  I was prepared for that meeting, but once she abruptly delivered her prognosis and no treatment plan, I was left speechless.  My mom is only 68.  Have you been in a similar situation?

 

I have is that after surgery I was also determined to be Stage 3.  My cancer is grade 3.  I underwent the 6 rounds of carbo/taxol and then 3 rounds of brachytherapy, but some doctors recommend external radiation as well with this stage and grade. And while C125 is not always a good marker for uterine cancer, a number of women and doctors do find that helps track the progress or regression of the disease.  To be fair, some doctors do not like to do follow up scans unless there are symptoms; however, follow-up physical exams are pretty standard. Did she not even schedule those?

Even after recurrence, no doctor has ever suggested I go home and call hospice.  Like your mom, I am in otherwise excellent health with lots of energy.

In any case, no sense in looking backward, though I do have to agree that I would file a complaint.  She did not follow standard of care protocol and as Kim said, if this happened to you, it probably has happened to others.  It sounds like you and your mom are on a far better path now.

jzona said:

Update

My mom's new oncologist called her this morning to discuss the initial results of tumor board.  While he did confirm spots on her lungs and liver, he provided promise! Her former oncologist did not test her to see if her cancer was hormonally charged, and he is ordering her former pathology to find if it is.  As such, he is researching a couple options; 1.  Hormone treatment if it does indeed have those recptors 2.  Chemo 3.  A combo of both. The best news, is he and his team are NOT giving up.  

Jzona,

This is exactly how it should be. If the surgical pathology reports are incomplete, then a tumor profile will likely be next. This can take some time, maybe one to two weeks. (Sidebar: about six months after my TAH, the [semi-major] cancer center where I had my staging surgery added uterine cancer to the [very short] list of tumors that they now completely profile right after surgery. The really big guys (MSKCC, for one) automatically do this for ALL tumors.)

Something else I did for myself (actually, that my oncology nurse practitioner did for me): taking a half tab of 5mg lorazepam (aka Ativan) when my anxiety started to overwhelm. This helped me through the recurrence diagnosis, treatment, and acceptance. Also channeled, and continue to channel, Carl Sagan writings for perspective! 

Best of all possible worlds to your mom, you and your family. We are all more resilient than we initially think we are.

Beebster

Hi Jzona,

It's difficult to offer questions to ask at this point; your onc is assessing the situation, and making a determination. One big question: how is he making the determination? Why this treatment and not another? How long will this treatment continue, and what comes next? When will a complete tumor profile be done (if it hasn't been done already)? Mutations are critical determinants in treatment pathways. For example, if your mom turns out not to be estrogen/progesterone positive, that means hormone therapy is less likely.

One source to familiarize yourself in advance for treatment options he might recommend  would be the NCCN Guidelines website. You have to establish an account, but once you do (it is free), you have access to NCCN Guidelines Version 1.2017 for Uterine Neoplasms. https://www.nccn.org/professionals/physician_gls/f_guidelines.asp  

NCCN is the likely source for the "protocol" your mom's first oncologist (using the term loosely since it is clear this person is no oncologist) said she followed.

The guideline is a 94-page PDF, recently updated (April 2017) to include "Evidence Blocks" that assign numerical ratings for the efficacy, saftey, quality of evidence, consistency of evidence and affordability of various treatment options. I draw your attention to pages 5 (explanation of evidence blocks), 15-16 (therapy for relapse), and 28-29 (evidence blocks for systemic and recurrent therapy).

Good luck - I am interested to learn the follow-up for a grade 2. (I am grade 3 - nasty stuff!) 

Beebster