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Terrified They Seem Reluctant To Do Surgery

LadyMox's picture
LadyMox
Posts: 56
Joined: Sep 2018

I'm terrified that my doctor seems reluctant to do surgery unless my large tumor shrinks enough for lapriscopic surgery, will get imaging after chemo 4. I'm 42 and 242 in weight and in decent health as I've fully recovered from the Septis as far as I can tell. Granted my ca-125 has really responded to the chemo and I'm at 18 after carbo/taxol 2 and maybe she is hoping for an easier surgery.  What I've been trying to understand from the customer portal (my doctor has not given me much facetime till a few minutes yesterday) my 5x5x4inch tumor as of last check well before chemo, I think it's worst then I thought as they say it's gotten in the connective tissue of my instines (mesentery). I was so hopeful they could clear me out this time even briefly and now I'm terrified I'm done already and they won't ever operate. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2522
Joined: Mar 2013

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".  

LadyMox's picture
LadyMox
Posts: 56
Joined: Sep 2018

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. 

Taylor00
Posts: 1
Joined: Oct 2018

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!

 

 

 

LadyMox's picture
LadyMox
Posts: 56
Joined: Sep 2018

Yeah mine is Dr Ackers. I am guessing her science is good as Roswell has a great reputation, as you said her communication skills need work. I don't think I have USPC (but who knows, my notes say adenocarcinoma ) but it's stage 4B. I'm a Buffalo girl for sure, born and will probably die here. My name is Tammy.

Northwoodsgirl
Posts: 498
Joined: Oct 2009

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

LadyMox's picture
LadyMox
Posts: 56
Joined: Sep 2018

They responded to my questions via the web portal was pretty much we have to wait on imaging after my 4th chemo to say more , which is probably 5 weeks away. I just have to hope my dropping CA125 levels mean good shrinkage. I can try and ask more at my next appointment in 3 weeks but not expecting more answers

LadyMox's picture
LadyMox
Posts: 56
Joined: Sep 2018

I do trust they know what they are doing since Roswell Park is one of the top cancer hospitals in the country, I just have a mighty need to know things.

MAbound
Posts: 783
Joined: Jun 2016

I don't believe CA 125 has anything to do with laproscopic vs open abdomen surgery. It's the size of the uterus or tumor that matters, so I'm kind of surprised and don't understand why laproscopic surgery is still even being considered as an option for you. Sure, an open abdomen means a longer recovery time, but giving the surgeon the best conditions for seeing and removing all of the cancer he can is a worthwhile trade-off. I had a radical hysterectomy, so I was pretty much gutted of everything that could be taken out, including connective tissue. No regrets even though recovery was not short or easy.

I know that Rosewell is such a big deal in Buffalo and it gives a level of comfort to recieve treatment there, but it's the doctor that matters more than the institution in my opinion, so maybe its time for you to get some second opinions on the way your treatment is going away from there. Others on this board have gone to places like MD Anderson, MSLK, Hopkins, and Moffit. You may not get the answers you're hoping for, but you'd at least get your questions addressed and have some certainty that Rosewell is doing ok by you or not.

I was offered a referral to Rosewell or CCS Oncology (the only places with gyn-oncolgists in the area) by my gynecologist and I had no idea what to do. Rosewell was my first inclination, but I asked her where she would go if she were me and she sent me to Dr. David L.  Marchetti who was with CCS at the time. I've never regretted going to him rather than Rosewell.  I can't tell you how many times I heard from other doctors how he is the best in the area for his surgical skill. He's rather quirky in person and is 69 already, but while he uses the current "gold standard" for treatment, he also has enough experience and confidence to try things outside the box like he did with putting me on Megace after treatment without waiting for me to have a recurrence. He says he's never going to retire, so you may want to consider him if traveling for second opinions isn't possible for you.

Here's a link I think you may find interesting and informative.

https://www.yalecancercenter.org/patient/programs/gi/info/info.aspx?id=CDR62964

Keep educating yourself about what treatment options are out there for you rather than researching statistics. It will help you to form questions to ask and help you to understand the answers you get. I think all of us are surprised at how much there is to learn when we get this cancer and how much power it gives us to advocate for ourselves as we fight this beast. It seems like each new thing we learn keeps creating new questions, so the need to keep digging and learning never seems to stop. Keep going back as far as you can in these threads to find things to look into, there is so much here that will help you.

You know, even while you are on chemo, there is no reason why you can't get going on the genetic and genomic testing. It takes time to get it done and it would be really helpful to know if you'd be eligible for immunotherapy if you can't have surgery. I'd also ask if they could put you on megace and metformin. I think you can take it while on chemo, but don't know about with immunotherapy. 

Hang in there, it's not easy, but it's still not hopeless.

LadyMox's picture
LadyMox
Posts: 56
Joined: Sep 2018

I think my doctor is hoping that the lower CA125 numbers will mean more shrikage so easier recovering time and quicker back at chemo after surgery. I think my tumor would need to shrink at least 35% but I'm just guessing based on the size of my uterus.

 

I might consider switching doctors, thier science is solid but thier bedside manner and ability to answer "why" is lacking and send people who don't know my case clearly. I fully understand sometimes they don't know things yet. 

I also know several people who work at Roswell, I could ask who is a good there and might be able to switch to a different doctor easy if I choose.

I have had all my stuff transfered to my primary doctor, maybe he can help translate at little even if he is just a primary doctor he will take the time to talk to you and has been fantastic. As opposed to my main gym cancer doctor mentioned how much better I looked but if she would have spent more then 1 minute talking to me she would have seen my improvement before my first chemo. Last time she actually talked to me was when I was a week out of the hospital for the septis quite some time ago.

LadyMox's picture
LadyMox
Posts: 56
Joined: Sep 2018

I think the main issue is that my cancer doctor didn't give me facetime since Aug 9th when I was a week out of the hospital. She might change her tune now that she sees I'm much much better. I was better before the first chemo.

As a side note most of thier nurses have been fantastic, especially the chemo nurses.

Soon the side effects of the third chemo will hit and then I'll get a 4th and imaging for sure. Guess see where I'm at from there.

derMaus's picture
derMaus
Posts: 533
Joined: Nov 2016

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.  

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

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. 

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

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!

janaes
Posts: 723
Joined: May 2016

My situation is quite different but i will tell you my gynlogical oncologist did my surgery but gave me advice after to have no chemo just bracytherapy. I had MMMt uterine cancer stage 2 grade 3.  At first i was excited i wouldnt need chemo. One other doctor told me i would need chemo.  It confused me so i investgated more. My pathology report was important in my desision to do chemo dispite what the gynocoligical oncoligist said. I ended up talking to a medical oncologist and had a tumor board of about 10 doctors look at it as well. The choice was to do chemo and bracytherapy.  I didnt and still dont trust this suposed cancer specialist.  I havent seen him since the day he told me to have no chemo. He was wrong and i knew it.  

Its okay to do what you need to do and do what you feel is right for you.  You get to live with your disision. I would have always wondered aboutca reacurence if i would have not gotten chemo.  Do what you feel is right.  It will come together in the end.  I had a lot of highs and lows through this process. I felt angry and frustrated and finallt felt good about it.

Janae

LadyMox's picture
LadyMox
Posts: 56
Joined: Sep 2018

These are all good things to consider but right now my mental health is failing.. I'm coming undone....my aniexty has started into depression numbness as I've considered dark things since I feel I'm dead anyways soon. My husband is helping me the best he can and we will see our primary doctor in 6 days. 

janaes
Posts: 723
Joined: May 2016

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

pinky104
Posts: 574
Joined: Feb 2013

I was a stage IVb and I can understand why you think dark thoughts.  I had to adjust my thinking from thinking I would live a very long life like my mother and grandmother did to thinking I was going to die fairly soon.  I found that thinking the worst prepared me ror it, and things could either end up the way I expected or they could change for the better.  After open surgery and 6 rounds of chemo, I was NED.  It came back a full seven years later and I fought it with success again.  My GYN/onc. hinted that he thought it might be back in another 5 years, so my battle probably isn't over.  The fact that your CA-125 has come down to 18 is huge, and a very good sign that things are working out for you.  Please don't get suicidal when you're having such great success.  Accept the positive!

Armywife's picture
Armywife
Posts: 230
Joined: Feb 2018

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.

janaes
Posts: 723
Joined: May 2016

I like what Amywife said. Shes right. These feelings are normal. I remeber feeling depressed and numb. Some people are able to work during all this but after 3 days of trying i couldnt do it. I went home and was depressed and really i was numb. I didnt know what i was going to do. I had no strength. I was half way through treatment. Didnt work in the summer and after 3 chemos it was time for work to start.  I felt mad i couldnt do. It..  I will tell you what got me through was all the kind things peope said to me. Alot on this board. They understood when i didnt make it through the day. It gave me the courage to call my dad to go with me the next day to my job to request time off. It wasnt perfect but i got the time off and could go forward again.  You are normal! Really you are. Please dont be too hard on yourself. You will make it one bit at a time. Do what you can right now. Your not alone. I know it might feel like it but your not. We are pulling for you big time!!!!!

Hugs

Janae

MAbound
Posts: 783
Joined: Jun 2016

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.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2522
Joined: Mar 2013

ladymox, your work should have an Employee Assistance Plan (EAP) that will provide you someone to talk to.  Maybe you have a pastor or priest who will help you through this as well.  I would also recommend a call to the doctor's office for something to help you calm down.  I find a phone call is very different from an email and I think they would be willing to help you.  They understand this is not a cold and will help with it.

LadyMox's picture
LadyMox
Posts: 56
Joined: Sep 2018

It's none of you, it's this cancer and I realise her reluctantance to promise surgery. I've never been sick before in any real way.  I thought I would at least be able get past this time now I'm not sure. Apparently my first CT scan showed the mass was in my mesenary (blood vessels of my bowels) and the mass was an inch bigger , apparently didn't indicate it in the second scan. The first scan was my night in the ER for the septis and I was in pain and squirming and there was no contrast in my system. My second scan was after the septis was resolved 3 weeks was with contrast and was likey a much better scan and they though the mass was from the ovary, but the tumor so large hard to tell. If the first is correct then she can't surgically remove the tumor apparently. The idea of inoperable terriifes me.

Now granted the first scan was a mess, and likey the second is much better but still can't stop worrying. The doctor plans for me get the 4th chemo followed by a scan to see where we are at. It's probably promising that if the scan is good that she will do it lapriscopicly, she likey suspects the tumor shrinking because of my ca125 levels. She wants an easier surgery so she can get me back in chemo sooner. I don't mind the idea of an easier surgery, but I can't help be scared I'll never get to surgery.

For now I have to wait for chemo to pass and then get a 4th and then imaging to see where I'm at 2 weeks later. So much waiting but I know you all had to deal with. Physically I feel fine outside the chemo stuff. I'm trying to be hopeful that the first scan was not a great one and the second is probably the better one, and I'll probably get surgery in a few weeks if all goes well. But still terriying as I always though I would at least get past this time but now it's not for sure.

Red Corvette
Posts: 105
Joined: Jan 2016

Ladymox,

Easier said then done but hang in there. You’re getting through chemo and your hangin with the strongest warrior sisters on the planet.

You will get through this.

Red

janaes
Posts: 723
Joined: May 2016

Yep people on this board call cancer a beast. That is what it feels like. I know it doesnt feel like it is soon enough but your next scan isnt too far away.  You are doing this fighting so well. Youre done with 3 chemos already and im proud of you for that.  I will continue to think of you and pray for you. 

Janae

LadyMox's picture
LadyMox
Posts: 56
Joined: Sep 2018

On the postive side it almost seems that each round I have been managing the side effects more and more each time and it's not too bad. Physically I'm taking the chemo pretty well so far.

 

I feel a little better about my doctor saying "possible surgery" because it seems to be how that doctor works from what her other patient said. I have calmed down some but still will still talk to my primary doc in a few days about anti aniexty meds.

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