Terrified They Seem Reluctant To Do Surgery

Dear, you need to talk to them.  Take a breath and ask them what the plan is, tell them what you were hoping for, find out what they are waiting for to move forward.  If someone tries to escape, just say, "Excuse me.  I need some answers".  

Dear LadyMox, I am sorry that it seems your doctor hasn’t spent the time to clearly communicate and ensure that you understand your treatment plan, rational and timing. 

Please consider this as I offer these suggestions with great compassion for all you are going through. 

You  may want to start asking “why” more often- have you ever heard of “the 5 whys” to help get a better understanding of something? You may want to consider “Googling” it.

Basically, when the doctor says “A” then you respond “Why is that?” Then the doctor replies (expands on explanation) and you say “Help me understand that further...” until you understand the “why”.  Sometimes a person needs to ask “why” 5 times before they get enough background information as to the  “why”.  

Sounds simple but it isn’t easy for us to really listen and understand all we need to in everyday life let alone when we are fighting for our lives as when dealing with cancer. 

((Hug))

Lori

This is important. If you were feeling worse that would be a very bad sign. You've been given some very good advice on this board. Like you, I'm Stage IVB and like you I was given Taxol/Carbo. I was told that I was not a candidate for surgery because the tumor was so large. Then a CT scan was done somewhere around the 6th chemo. By that time the tumors had really shrunk, and I was told I was now a candidate for surgery. They did laproscopy surgery. I was told my uterus was hard as a rock because it calcified. I was put under surveillance after surgery. Within three months I had a recurrence.

I would ask the gynecologist oncologist how many laproscopy surgeries he/she has done. If the reply is a dismissive, "I've done lots". Look for someone else. Also ask why he/she wants to do laproscopy rather than an open surgery. If the answer is evasive this also may mean that you should look for a new surgeon/doctor. Good luck!

derMaus said:

Maybe it's time to get a new

Maybe it's time to get a new doctor. When I was first diagnosed, I was referred to a gyn/onc for surgical evaluation. She operated less than 3 weeks later. She was very agressive surgically, which I appreciated: I had a radical hysterectomy, open incision, with 37 lymph nodes removed, one with cancer in it. When I was awake - i.e. not unconscious - I found my doctor to be dangerously incompetent at actually treating my cancer (vs. cutting it out).

Cancer is terrifying and we all want to make our doctor relationships work; who needs change at such a time? But sometimes you have to make the break. I first went to a 'regular' oncologist at the same hospital, figuring that their job was to treat my cancer, not just cut it out and prescribe a the standard chemo regimen. He wasn't much better (missed stuff @ the PET scan, etc.) so I went to my genetic doc (also a surgical oncologist) for whom I had great respect. She recommended my current oncologist, who I'm happy with. I posted this all on my About Me page because so many of us have a similar stay/go dilemma. I share MABound's question as to why, if the location is so tricky, it has to be done laproscopically. I know that's what we all want - I sure did - but an open incision allows better visibility and removal. I'd also ask why you can't have an MRI, stat, as it's completely uninvasive and would clearly indicate tumor size.  

Of course we all hope for a less invasive surgery but I just want you to know that I was scheduled for laparoscopic until my surgeon got in there and saw what a mess I was and opted for open surgery. I wasn’t too happy when I woke up but a month later I was in Tuscany taking a family vacation before starting chemo. Recovery was not so bad. 

LadyMox said:

I have submitted some extra

I have submitted some extra questions via thier customer portal one from me and one from my husband. Hopefully they can clarify.  Maybe in the end it's good news that they may be able to remove it lapriscopicly as opposed to open surgery since my CA125 numbers have plummeted so dramatically, just delivered in a terriable way. 

LadyMox...My name is Mary.

I'm also in Buffalo and being

treated at Roswell

 In fact Im pretty sure 

we are seeing the same Dr.

Im seeing Dr Acker and like

you Im getting chemo (3rd one

coming up next Thursday.)

I havent had surgery yet either.

I believe you and I have the same

cancer. UPSC stage IV. I have mentioned

surgery a couple times and her answer

was vauge. I have an appointment 

next Thursday and intend to get an answer

as to why chemo first and no talk of 

surgery. I believe she is a good Dr. and

she was highly recommend by another Dr

I know

She is not a new Dr. I trust that she knows

what shes doing but her communication

skills need some work! I will post again and let you

know what she tells me next week. 

Nice to meet someone im the same town!

Im so sorry about your mental health. I will be thinking and praying for you tonight.  Im glad your comming here for sypport.

Hugs

Janae

Breathe, girl.  Let me assure you that the panic, anxiety, depression, spinning, numbness - every bit of it is NORMAL.  Normal!  You've just received a confusing and terrifying diagnosis, and if not now, when would all those things happen?  It truly is an impossible season.  BUT - all of us here got through that phase.  and it IS a phase, a season, and it has an end.  Trust me when I tell you that this part is really the hardest.  Once your treatment plan is decided, you will be so relieved and you will just have to sit back and implement.  Don't give in to the despair and panic.  Have you ever heard the saying, "How do you eat an elephant?"  "One bite at a time."  So sit down with a notebook, and start writing out your questions.  Get them all down on paper and then your head won't spin trying to decide a million things at once without information.  The numbness is a defense mechanism in your body because it's on overload.  This problem will get solved.  It will.  My biggest problem in life is that I cannot make decisions.  I agonize in the grocery store between red apples and green apples.  Last week I booked and cancelled four different flights to the same destination because I couldn't decide which was the best one. I was in tears, pacing.  Most people would have been howling with laughter at how I could be so undone over something that didn't matter.  But your surgery and treatment do matter, and I remember vividly making a big poster with a list of second opinion doctors and then reading all their bios and the papers that they wrote, just trying so hard to choose the right one because I felt like my life depended on it.  You truly can drive yourself crazy.  I don't want to make this post too long, but I just want to encourage you to slow your head and heart down a minute - rest - trust God - take tomorrow and don't allow yourself to "go there" for a whole hour or two.  You are doing what you need to do right now, which is having chemo.  I'd encourage you to focus on getting a second and third opinion about surgery, so that when the time comes, you will hopefully have at least two of the three confirming a surgical plan.  Don't worry about open or laproscopic.  The right surgery is the one that gets the job done for you, and you will recover from either one.  Your current emotional state is normal and to be expected, and it WILL pass.  We are with you.

I look at these posts and wonder if we sometimes don't overwhelm with advice when someone is having a hard time with their diagnosis and treatment? Some of us are fighters, but some of us are more fragile and need that elephant served up to them in smaller portions. It takes a while for us to figure each other out and I'm really worried that we've come on a bit too strong with someone who has other issues to deal with on top of her cancer diagnosis and treatment. Me especially. There's always that risk of putting one's foot in it when giving advice to another, especially the longer you're here and the more you respond. Lady Mox, feel free to tell us to let up on you anytime you find us overwhelming. We mean well, but I can see where it might feel like it's all coming at you too fast to cope with. I hope your visit with your primary brings you some relief and God bless your husband for being there for you.