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Dilemma

Primavera's picture
Primavera
Posts: 74
Joined: Mar 2019

I met my gyn oncologist on April 2. Although she was not the original one intended for me because my gyn wanted me to get help in a hurry, I like her a lot.

I had CT cans ordered by my regular gynecologist right away, so that the oncologist could have them two days later. My gynecologist was freaking out.

Oncologist explained the procedure for laparoscopic surgery and said that I would probably get one, because I have no underlying conditions, no obesity and was healthy (I find this term crazy now).

Then she said: Because the tumor is an aggressive one, I'm going to order CT scans. My heart sank because I thought "Maybe that's why she was calm, but she doesn't know what's there!"

I told her I had CT scans done two days before and she should have them. She looked on the computer and found them, and was reading them while I held my breath and tried to look at her face and expressions, but they have a way to stay calm and expressionless.

She said: You have a few tiny nodules on your lungs, but I'm not cpncermed about that. Then she said: You have a cyst on your liver. No concenrs about that either. (My face was probably terrified). Then she said: The rest of the scans are clear, so the operation I just explained is on.

She gave me 3 dates: April 15, April 22 or May 2. She said it was my choice.

I know I want this thing out asap. But I thought:

April 15 is coming in fast. There are still some tests I would have to have done. Have to tell people at the office, making arrangements there, too. Taxes for my small company to do it with my accountant, etc. It gave me a lot of stress to think of that date. Oh, and it is at another hospital and far away from my aunt, who is always with me on this. My fiancé could be there though.

April 22. We have/had a vacation planned to go to Florida, by car, with my fiancé's sister, her husband and two teenage kids, who adore me. This is an ideal date for the operation, except, again, at the hospital my aunt can't be at. Of course fiancé would be on vacation because of the canceled Florida trip, so he could be there.

May 2. Same hospital I already know because of my D&C. Better hospital than the other one. My aunt can be there. Fiancé cannot because he works in finance and it is book close. But I'd rather have my aunt, anyway. She's my mother's youngest sister and my mother is in another country and knows nothing about all this.

I could go on vacation, too, and be back a few days later to go onto this operation. Social worker at the cancer center heard my concerns about "something growing in 15 days (April 15 to May 2)" and said maybe I should go on that vacation to relax a little. That if the doctor had thought I needed to be operated immediately, she wouldn't have given me the other date or had said I needed to choose the closest date.

My choice was May 2, but I can call and change it. Afraid to let a month go by (or only 15 days since I can't have it tomorrow anyway). I was talking to my fiancé this morning and he said it would be a shame that something else grows if I wait.

This is all so scary. Thank you, all, for holding my hand.

Jairoldi's picture
Jairoldi
Posts: 204
Joined: May 2017

Primavera - it's a lot to absorb.  I think it's safe to say we all need to catch our breath when faced with the reality of our diagnosis.  If I might offer you some assurance it would be that you've probably had this cancer for quite some time and that it's okay to wait a bit if the Doctor agrees.  My doc assured me that I had the cancer for a few years before it was found and that a month or two at this point wouldn't change anything.  I also remember having a vacation planned while I was having chemo and was assured that putting off one of my treatments for a week would be okay.  Your doctor will know what's okay for you.  But, once you have a treatment plan and are working it everything seems to be easier on the mind.  The thinking and worrying without having any action to take can be overwhelming.  Other ladies will be along soon to share their encouragement and experiences.  

Best,

Jayne

Primavera's picture
Primavera
Posts: 74
Joined: Mar 2019

Thank you for your answer. I think it felt good to write all that down, although I probably shouldn't make such a big deal out of that.

It's just that people around me are scared and suffering for me...and they know me well. Most times, when facing big problems, I put things in the way myself so that I don't have to think or make a decision. A procrastinator when I'm terrified. That's me.

I still have in my head the talk of the gynecolgist saying "we're hoping we caught this on time" and running to the phone and calling an oncologist to get me the earliest appointment she could, while writing the referral for CT scans to be done right away.

 

zsazsa1
Posts: 322
Joined: Oct 2018

If I were you, I'd take the soonest possible date.  Yes, the tiny lung nodules and the liver cyst are probably nothing.  But you want this OUT, ASAP!  There is a poster on this board who had rapid and sudden metastasis shortly after surgery.  The sooner you get this out, the better.

My GYN/ONC surgeon couldn't get me in the schedule until ten days after I saw her, and those were a really rough ten days, waiting.  You need to move ahead on this.  

We women who have gone through this will be here for you, all the way, to offer support and what info we can from our own experiences.

Primavera's picture
Primavera
Posts: 74
Joined: Mar 2019

Thank you. I've been trying tis morning to change the appointment for April 22. I know that's not as soon as the 15, but there's so much to do. I had pre-admission tests done for the D&C back on 3/21 and then the CT scans and I think the hospital for the 22 date wants me to get new pre-admission tests, all over again done at their labs. The one for May 2 might take some of my testing as "done" and will only do a few for pre-admission.

I've decided not to go on the vacation anyway. Even if I'm able to relax in Florida, I'm going to be tired and sterssed out on the way back.

I never thought about metastasis shortly after surgery. How does chemo happen then? I guess it would have to wait till you're healed. I hope she's doing OK.

MAbound
Posts: 859
Joined: Jun 2016

It's true that waiting a month won't make that much of a difference with the cancer's growth. It's already been there quite a while.

What matters is which date you and those who live with you can stand the best. If the anxiety won't let you enjoy a vacation or function at work, then that's your answer. If you can handle the wait without regretting it later, then go ahead.

April 22 is the anniversary of my surgery if your superstitous. (I'm still happily dancing with NED, i.e. No Evidence of Disease) It's also my oldest child's birthday (ironic, isn't it?), so I consider it a very auspicious day!

Primavera's picture
Primavera
Posts: 74
Joined: Mar 2019

After reading this and thinking about how I would feel on a vacation and then coming back tired for the operation (it's a road trip, many hours driving), I decided that we shouldn't go.

I'm trying to shoot for April 22 at the other hospital. I'm not liking the thought that this new hospital, even though they're a subsidiary of the other one, want me to go with new tests. I just had testing done for the D&C on 3.21 and CT scans before I saw the oncologist, just last Friday. How much can my EKG change. I hope I don't have to do chest scans again.

How crazy that you had the opration on the birthday of your oldest child. Did you have it as soon as you got diagnosed?

MAbound
Posts: 859
Joined: Jun 2016

I didn't think about the date until my daughter brought up the irony of it. My circumstances were different from yours in that I was not working and could take advantage of the opening that came up in my surgeons schedule. I leapt at it because I was not eating or sleeping from the anxiety that the diagnosis caused. Nerves of steel I have not!

Because I wasn't working I was able to get all of the pre-op testing done very fast. It was one test after another (PET, MRI, EKG, Chest X-Ray, Labs). No hospital will admit you without the EKG, CXR, or labs at their facility, so don't angst about any repeats. That's policy everywhere. The PET and MRI was to help my surgeon know how far he needed to go removing lymph nodes and other tissue for the testing. It's a lot to get through before surgery, but I told myself "anything that helps him do a good job!"

Jairoldi's picture
Jairoldi
Posts: 204
Joined: May 2017

ThansMAbound - you always have such good advice. 

Forherself's picture
Forherself
Posts: 184
Joined: Jan 2019

I like to ask "If you were sitting in my chair, what would you do?"  to the doctor.

Primavera's picture
Primavera
Posts: 74
Joined: Mar 2019

I tried that. She said: It's all up to you. Any of those is good.

I'm trying to change the date to April 22, which is only one week before the other one, and only one week after the first one. But people around me are very worried.

Soup52's picture
Soup52
Posts: 901
Joined: Jan 2016

Primavera, I thought I’d add my two sense . I was diagnosed in August of 2015 and didn’t have myhysterectomy until October 15 as my daughter was getting married in Florida Disney World. I had high grade clear cell stage 3C and after all my treatments which ended July/ August2016 I have remained cancer free so far. I’m with MAbound. I think it will not hurt to wait until you have your support system in place.

janaes
Posts: 758
Joined: May 2016

This cancer stuff is so hard. Once i found out about my cancer i was in for my hysterectomy about 1 month later. I was in the hospital recovering for mothers day 3 years ago. I would say also that any of those dates would be good. The reason i wanted to get into my surgery was mostly because my cancer was pushing on my bladder and i was leaking every day. I had to wear a pad. My doctor didnt give me any choices for dates. She gave me the date and made sure that was okay with me. I just made it work. My family worked with me and it all worked out.

Try to stay busy. Thats what helped me. I worked up until the day i had the surgery. I tried to focus on what i needed for myself after i recovered. I had food by my bed so i would be prepared

cmb's picture
cmb
Posts: 358
Joined: Jan 2018

I had my surgery 4 weeks after I met with the gynecological oncologist for the initial consultation. This was my choice. I had just started a new client project and I wanted to get the onsite meetings completed before I had surgery and chemo.

Although my doctor was very serious about the nature and treatment of my aggressive form of cancer, he didn't express a concern with my waiting about a month for the surgery. But I'm sure he took into account the CT scan that I had just before I met with him, which didn't show cancer outside the uterus (although some cancer cells at the surgical margin were found during surgery, upping me to Stage IIIB).

Primavera's picture
Primavera
Posts: 74
Joined: Mar 2019

I was calmly waiting for May 2, staying busy at work, happy that it was a crazy week at the publishing company I work for...until my family started being afraid of the difference 15 days can make.

I'm going to try for the April 22 date, but if I get too much trouble, I'll just keep my other date. I go to work in NYC, so once I'm there, it's very difficult to come back to NJ for an appointment or tests.

I still have to tell people at work about this. I've only told three of my closest co-workers. One more thing to do.

Primavera's picture
Primavera
Posts: 74
Joined: Mar 2019

I ended up having the operation on April 15. My fiancé, aunt and cousin were all there. It's April 24 now, and I'm recovering nicely.

zsazsa1
Posts: 322
Joined: Oct 2018

I'm so glad you chose to have it done early.  And the pathology results look good!  Wishing you a speedy recovery.  After whatever treatment they recommend, you should be able to look forward to hopefully good health in the future.  The prognosis is excellent, since they caught it early.

Primavera's picture
Primavera
Posts: 74
Joined: Mar 2019

It was a whirlwind and people were pushing me from so many sides to have it done as soon as I could.

Doctor came to see me morning after operation and said "Everything went great. Whether you'll need additional treatment will depend on full report; but all the nodes we took out were negative for disease and there was no spread." (Still not sure if I have read the full report or if what I got was what she had notice of that morning.)

After reading as much as I could here, "no treatment" worries me a little, because of that grade 3. But I'll see what she says. I'm also worried about those two nodules they found on my lungs and a cyst (maybe) on my liver.

I kind of want a respite from this endometrial cancer so that I can go check on the other things. I never had a single health complaint all these years, except maybe I didn't pay attention to hormonal imbalances? I used to lose my hair during periods of extreme stress and it would always grow back, but I remember my ex boss wanted to send me to a fancy hospital because he was convinced it was some hormonal imbalance. I was in my 20s back then, and it happened three more times, until my 40s.

DebiR
Posts: 37
Joined: Jul 2014

I wouldn't worry too much about nodules on your lungs at this point.  I had the same from my CT before surgery and the doctor said they were probably from something else and quite normal to see some of these.  Follow up CT scans confirmed that as they did not change in size.

I would expect a grade 3 to require some chemo though as a precaution.  I was stage 3A UPSC so chemo was an automatic for me.  I had the typical 6 rounds of carbo/taxol and its been almost 5 years from my surgery on 5/19/2014.

Try to relax as much as possible until you know what the plan is and celebrate that you were stage 1!

Debi

Primavera's picture
Primavera
Posts: 74
Joined: Mar 2019

I'm the girl with a lot of hobbies, but I can't concentrate on them. Doesn't help that I can't go to work and I'm alone the whole day long.

Ok...I'll try to relax. At least I was able to sleep well last night.

Forherself's picture
Forherself
Posts: 184
Joined: Jan 2019

I made everyone flannel pillowcases while I waited.  It was not too demanding, and it kept my attention.  The kids loved them. 

zsazsa1
Posts: 322
Joined: Oct 2018

I too had tiny lung nodules - they didn't change with chemo, they're not cancer.  The liver cyst is probably nothing, too.  I don't know what the chemo recommendation would be for grade 3 endometrioid - because I'm UPSC/clear, all my research has been about that.

Debi, that is great!  5 yrs out after stage 3 UPSC, and chemo, no radiation, and you're clear!  That is so wonderful!  I love hearing from women who are doing well after treatement for UPSC.  It gives me a lot of hope.

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