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Afraid to hope

wolfera
Posts: 46
Joined: Sep 2018

I am early in this process. I have my second opinion appointment at Hopkins on Monday. After that, the hysterectomy will be scheduled. The first Gyn oncologist I met with earlier this week seemed confident that I would only need surgery (praying this is the case). The logical side of my brain says I should just focus on that, but the emotional side goes to a dark place and I’m finding myself unable to have hope that just surgery will take care of this. I‘m so worried that if I let myself hope, then I won’t be able to take the potential disappointment.

I know I’m probably not alone in thinking this way.....

CheeseQueen57's picture
CheeseQueen57
Posts: 797
Joined: Feb 2016

They really can’t tell what you’re up against until they do the surgery. 

Northwoodsgirl
Posts: 519
Joined: Oct 2009

One consideration in addition to CheeseQueen’s comment....It may help to go into the appointment knowing that your treatment choices will more likely than not include some combination of surgery, chemo and radiation. Then if it is something less than that you won’t be disappointed. Hope for the best but plan for any combination of treatment.

Please remember you will get through this uncertainty one day at a time just as the other “sisters” on this forum have. We understand the importance of hope but also know the reality of not knowing exactly what interventions/ treatments one will have based on the post surgical pathological report.

Also as you proceed with treatment there may be unique circumstances each of our bodies decides to throw into the mix which then can change the treatment protocol and timing. 

Try to be resilient in terms of telling yourself you will get through the best case scenario or the worst case scenario. 

Monday can’t come soon enough I imagine....  ((Hug))

Lori

janaes
Posts: 752
Joined: May 2016

I like what lori said. Hope for the best but plan for the worst.  I did live a day at a time after my biopsy and tried to stay busy.  I did focus on what i had to do next. It helped alot.  I will be honest.  I wasnt prepared for the worst and didnt prepare for chemo. I remember even telling people that they will just get it all and i will just go on.  If i was to have to do it again i would have studied more of what could happen.  When i was finally told i would need chemo i was really angry. It did take me longer to come to terms with it.  

I really do hope it will be no chemo for you. That does happen.  I guess for you to beable to say to yourself that you will be okay if you do have to do chemo wont hurt you. I have had to do that with many things in my life. It helps to live a day at a time if know i can handle the worse or at least be okay.

Im so glad you are sharing here. I hope its helping you. 

Janae

Armywife
Posts: 279
Joined: Feb 2018

I sort of had the opposite happen.  I had the biopsy done and was told that it was a 95% chance of not being cancer.  I was surprised when they called two days later and said it was, but not too worried because they said it was the garden variety endometrioid endometrial kind and I had a 95% chance that just the hysterectomy would take care of it.  Surgery was a breeze, then a week later I read my patient portal and the results were up telling me that it was actually stage IIIA.  I called the doctor's office right away and they said, "Oh don't worry - just come for your 3 week checkup as scheduled."  It was an agonizing 11 more days and then they told me what I had read - I had spent those days frantically googling and worked myself into a frenzy.  Got a second opinion on the pathology and they upstaged and upgraded to stage IVB, Grade 2.  Treatment was the same - chemo.  I decided to reserve radiation for recurrence based on the fact that I couldn't find any studies that said it prolongs survival. Here I am, a year after finishing chemo, and I'm still me.  You're still going to be you, too.  Conserve that energy.  Surgery will happen.  You'll move forward from there.  All of us here have done it, and you can too.  Worry won't change one thing, but having strength will.  Ask for some meds to help you take the edge off, or for  good sleep.  No shame in having a little help - my word, if not now, when would be a good time to?  Hang in there.  We are with you.

wolfera
Posts: 46
Joined: Sep 2018

Thank you all. I really do appreciate all of the support and hope I can pay it forward to all of you. I am looking forward to my appointment tomorrow. If nothing else, I will at least find out how soon I will have surgery and I can focus on plans around that.

 

enjoy the rest of your weekends!

pato58's picture
pato58
Posts: 98
Joined: Jun 2018

I was thinking about you and wondering how your appointment at Hopkins went?
Let us know :)

MrsBerry
Posts: 102
Joined: Dec 2017

Hopkins is a top cancer center, it is where I was treated. I am glad you are getting that second opinion. Good luck for your appointment, and know we are all supporting you. It helped me tr mndously to know this community was thinking of me. Hugs to you.

Donna Faye's picture
Donna Faye
Posts: 232
Joined: Jan 2017

Let me assure you whatever they tell you, there is a positive side. I had BC 25 years ago and was a Stage 3 with

20 positive lymph nodes in arm - I was 53 years old. My prognosis was grim but I took the advice of the doc and went for the big gun treatment and lived 23 years as a healthy mom, grandma and horse rider. 2017 brought uterine and had all the bells an whistles for that; recurrance in 20 18; more bells and whistles and now at 78 am NED for 6 mos. and hoping for more years to beat the odds. Don't go to the dark side - put on your wonder woman style and beat this- whatever. Look at all these wonder women on this blog.

tonya12
Posts: 3
Joined: Oct 2018

I am not sure how to post messages on this board.  I am new today.   I have had

uterine cancer since  March of this year.   I had surgery.  I am stage 4.  i have

had radiation and chemo.  They found a spot that they couldn't operate on

behind my vaginal wall.   I have to have more chemos.  The spot is partially neucrotic

which means it is partially dead.   i thought that was good news.  They said i had a good

cat scan,  but that i will be on chemo from now on.  I never knew people just stayed on chemo from now on.   I am so upset.  Could anybody help me?

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2571
Joined: Mar 2013

tonya, you figured out how to post. I am so sorry to hear what you have been going through and so happy you have found us.  You are not alone.  I thik we all know it is overwhelming, it is completely understandable.  I am sure the other ladies will be along soon.

Northwoodsgirl
Posts: 519
Joined: Oct 2009

Tanya, I am glad you figured out how to post on this forum discussion board. 

I am not sure what chemo you need to be on from now on. I had chemo called a “sandwich “ protocol because radiation was scheduled or done between the 6 cycles of carboplatin and Taxol. 

It does seem like there are some types of cancer whereby a person is treated with chemo as a maintenance type therapy rather than a “cure “. You know most of us never have been told that we are “cured”. We are told there is “ no evidence of disease”. 

Sometimes depending on the type of cancer (for example) brain cancer there can be necrotic (dead) tissue seen on a scan but the doctors aren’t 100% confident if it is scar tissue or cancer so they either do watchful waiting or treat with more chemo. Also some breast cancer survivors take Tamoxifin (orally/by mouth) for many years. 

Sorry I am not much help with your specific situation. A good thing is that there actually is a chemo drug you can take as maintenance therapy. 

Lori

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