What do you wish someone had told you?

Northwoodsgirl said:

Questions to ask for newly diagnosed uterine cancer

Welcome to the sisterhood! You are fortunate to be on this site so soon after the phone call.

1. I wish I had been aware of the website NNCN. This is where the widely adopted and standardized cancer treatment protocols are posted for doctors and patients. It even has treatment algorithms based on stage and grade and if dealing with a reoccurence of cancer by type. Included are timing of surgery, chemo protocols and types of radiation protocols.  I also wish I was better prepared for the rollercoaster of emotions (denial, anger, fear, anxiety) you will experience as you learn how to go on this journey. 

2. Ask the surgeon how many Total Abdominal Hysterectomys (TAH) they do in a year and in their career? Your best surgeons in terms of experience have done 100 or more in their career. Ask why they are recommending a laparoscopic surgical approach versus an “open” abdominal surgical approach considering you personal medical and surgical history.

Minimally invasive-laproscopic  robotic DaVinci is not ideal for everyone. Also finding Women’s Cancer Center that is recognized as a Center of Excellence is a plus. 

3. Pain management challenges: Tell Your gyn/onc.that you need to have a pain consult. It could be with a PharmD (pharmacist with advanced training- pronounce phonetically as

”farm-D”. They are clinical pharmacist. 

Tip: Tell the ob-gyn surgeon that you need to know where the anasthesiologist and radiologist that the hospital uses for your surgery is coming from. Otherwise your health insurance company will make you pay “out-of-network” rates which could be 60-80% of billed charges ( not the lower “in-network“ discounted contract charges negotiated with “in-network” providers. The hospitals don’t like to tell you ahead of time because they don’t always know which anasthesiologist or nurse anasthesist will be assigned to your surgery. Call member services on the back of your insurance card once you know the hospital, surgeon, radiologist and anasthesiologist name and group name to see if they are “in-network” or “out-of -network”. 

5. Don’t waste money on a wig! ( You may not need chemo or lose your hair ( find out if cooling caps are covered). Their are so many cute scarves and comfy cotton chemo sleeping caps). 

Ok I’ll stop now...  Keep your “sisters” on this board posted on how you do. ((Hug))

Lori

Lori, This is such a helpful thread, & especially this post, thanks.

Still need help with this (no help from doctors here):

"I also wish I was better prepared for the rollercoaster of emotions (denial, anger, fear, anxiety) you will experience as you learn how to go on this journey. "

Doctors at any point may treat you with doctor-speak and choose what and how to tell you so that you get confused and maybe don't have the information you need to think and plan and decide.

For diagnosis, I sought a hysteroscopy, after a few years of many biopsies that came back with results: scant atypical cells, too little tissue. I was urged to have a d&c. For other medical reasons I did not want any hospital procedure. I did research and figured out what I needed was a hysteroscopy. I went to a new doctor a year ago with that request. That doctor insisted on d&c. I suspected the d&c would yield same results: scant atypical cells, too little tissue. I had already figured out after 7 doctors that they could not see well enough because I have a lot of fibroids and one very large one. So, after April d&c, sono in August; bleeding in October; finally, hysteroscopy that revealed the serous papillary cancer behind the large fibroid. If I had been given the hysteroscopy a year ago, as I requested, I could have had the surgery a year ago. Research the different kinds of diagnostic procedures and the pros and cons and applicability to different situations.

Preparation for surgery. The surgeon doesn't have the time to tell you all you need to know. Anesthesia: I have huge number of restrictions (allergies, sensitivities, other). Serious planning in advance with top anesthesiologist who will speak with you on your level is needed. I didn't quite know that well enough but fought for it right up to the day before surgery and succeeded in getting great anestheologist treatment and consults before surgery from the top people. Whereas, at a different hospital for the April d&c, the anesthesiologists did not take me seriously, treated me in an angry way, and did the anesthesia incorrectly, whereby I woke up paralyzed and in pain (not from the procedure but from another medical problem I have that was exacerbated by the fasting and dehydration) - never again.

Same for pain team - but I was not so lucky in that case. I was sent to someone who had no knowledge of how to make a plan for someone with so many sensitivities. I was sent home from surgery with no pain medicine.  I tried some oxycontin for a few days and it didn't seem to target the places that hurt so I quit it. They had nothing to offer a person like me with sensitivies to the usual things.  That was something I managed myself. But I would not have been able to manage any problems with the anesthesia myself.

What does your biopsy mean? the doctors will be tired and busy and not want to explain it all to you. You may have to go searching.'

What will it be like on chemo? the doctor/s may not describe that to you. What about quality of life or other medical problems you may have or allergies or sensitivities? It's quite possible none of the doctors will ask you. They may just focus on the cancer as if it weren't connected to the rest of your body, to you and to your life.

I'm sure I'll continue to think of things I wish I had known.

I was so worried about surgery and how I'd manage it that I had no time for research, and I was working at the job too.

Good luck.

I know how anxious you are to have it behind you.  That in itself, is a wonderful thing.

3 weeks tomorrow post op for me.  I went to the gym today.  I'm acting like a turtle but finally things are beginning to look up.  Hang in there.  God's speed!

Karen

Tamlen said:

Type and grade

Thanks again to everyone who's chimed in with your experiences and wisdom. I used a lot of what you wrote about to guide my thinking in today's appointment with my regular gyn. We met to discuss the biopsy results.

It looks like I have endometrioid, grade 1. Some relief there. Will see gyn/onc next week.

Interesting idea to name your cancer. If my biospy is positive (hopefully, it isn't), I think I will name it Negan. He's a mean mofo who kills innocent people.

Good luck with the surgery!

You will be in my prayers...

Useba reading bed pillow to sleep after surgery. Really helped.