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The waiting

CJHCJ
Posts: 8
Joined: Mar 2015

Hi 

I have been here looking at some of the posts just to get a feel for the forum but now I am posting.  In early Febuary I got a diagnosis of adenocarcinoma.  It showed up in a routine Pap smear so the location wasn't exactly known but now I have had a cone that came back clear...so on to the uterus.  I had an ablation about 6 years ago so I was missing out on the main symptom of excessive bleeding.  I think I am running the gamit of emotions and thoughts.  Sometimes I am all chill like whatever its all good...not a big deal here.  Other times I am sure that I am not feeling hungry because it has spread and there is a tumor the size of a grapefruit in my stomach taking up all the room there.  So far the hardest part has been the WAITING.  I had the cone about 2 weeks after it was found on the pap.  Then I had to wait 4 weeks for the follow up which was also a pre op for the hyster. (which will be done using the DaVinci robot)  Then the earliest opening for the surgery was four more weeks away...UGH.  I just want to get this party started!  and find out what next...what is there and how much of it and what next.  I am sure that I am not the only one who has had to play the waiting game.  So far I am trying hard to use the time to prepare for recovery time.  How have some of you dealt with the waiting... waiting for biopsies, waiting for dr appointments, waiting for surgeries, you get the idea.

**side note: The day after my cone biopsy was done my GYN-ONC had a breast surgery of her own for cancer.  Lymph nodes were clear and she didn't need any more treatment...but needless to say that put her behind on her surgeries.

Thanks for any thoughts on how to wait.

Double Whammy's picture
Double Whammy
Posts: 2828
Joined: Jun 2010

but I hope my experience will relieve some of the worry about having a grapefruit - I was sure I had a football! 

When I got my biopsy results and was waiting for referral to gyn/onc, my gyn said "it's important, but not urgent".

I finallly had my hysterectomy well over 2 months after my biopsy, because in the meantime I also had breast cancer to deal with and that surgery trumped the hysterectomy.   I was so sure this "thing" that was growing in me was going to take over because we had to wait so long.  (I had an abnormal Pap 5 months before my hysterectomy).   For me, my docs were smarter than me (duh) and the odds were heavily in my favor (the jury is actually out until the final pathology report) that I had the garden variety type of endometrial cancer (endometroid adenocarinoma) and there was no rush to surgery because it is slow growing, and if it had already grown outside the uterus, well it already had.  Had my biopsy shown a more aggressive type of cancer or had a more aggressive type been suspected for whatever reason, it would have been different.  Of course, I worried that I'd be one of the women whose pathology would show a different story, but it didn't. 

I don't know if there is any way to make the time pass without the stress of waiting and not knowing, but try to remember if they know it's aggressive, they would be acting aggressively.   I tried to keep busy but I also allowed myself to feel sorry for myself.    When is your surgery scheduled?  Come here and vent as needed.  I found that my friends got tired of hearing about it. . . we get it.

Suzanne

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Waiting is so hard.  My 1st Gyn wanted to do surgery immediatly, but my Gyn-Onc wanted to wait until I was completely healed from the D&C I had had for diagnoses.  It gave me time to find a substitute teacher for my classroom and get lesson in order for my 1st & 2nd grade classroom.  The few weeks wait did not change my prognosis, but it did give me time to get some reallly important things worked out so I didn't have to worry so much about lose ends at home and school.  Lou Ann

nempark
Posts: 683
Joined: Apr 2010

Waiting is horrible.  We have to throw all the crazy negative thoughts out of the window and take one day at a time.  Off course, easier to say than to do. We have no other choice but to wait.  Hope you are seeing a Gyn/oncologist.  Another thing,  just talking from experience...although the healing process is quite easy with robotic surgery, which I had.  My Chemo Specialist told me she wished my Doc had cut me instead. 

So this is just a suggestion.  Many people have opted out of the Robitic for many reasons.  Please get a second opinion and do some research on the robotic.  My Doc who did my surgery is the Director of Robitic surgery, but since then I have been told that it is safer for traditional surgery because they are able to see all the tumors or masses and no cells will escape.  Again, just suggestion.

Please try to relax and the time will come when all this will be over.  Okay?  

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I wanted the Da Vinci robot for my surgery but my Gyn--Onc said he would not do that.  He wanted to be able to feel everything.  i am glad he did it the old way.  I am hearing about problems with the robotic surgery.   A second opinion never hurts.  Lou Ann

txtrisha55's picture
txtrisha55
Posts: 686
Joined: Apr 2011

Waiting was not so bad for me but when I went to my regular gyn I was bleeding heaviShe said we will go in and do a d&c. I had one back in 2004 and everything cleared up. Fash forward to 2011 March 7 started bleeding. March10 dr appt. March 25 d&c surgery. The week waiting for March 31 resutsl was easy because even though I was 55 and post menopausal the thought of cancer never had crossed my mind. Went to the dr on March 31 and she did not have the results of yet. She said she would have to put a fire under the lab but she did say that the hystoscopy when she was in there was nasty looking and there was what looked calcium build.up and some pylops that she removed. April 1 got a call from gyn dr she said she tracked down the path report and she was sorry to inform me that they found MMMT cancer. Her office was part of the UTSouthwestern Hospital and her office was setting up the appt for me with the head female dr of the gyn onc  cancer certer for Apr 4.  I had to call my gyn office back because I heard cancer and everything else went right through me. So of course the very first thing I did was the go to Google and type in mmmt cancer. Opened the first tab and it said depending on the stage there was a 50% chance of living 5years. I started crying. That lasted about 1in then I got myself together and told myself that is not me.  Apr 1 met with the gyn onc dr she cover more of what she would do and the completed abdominal hysterectomy would be done April 8, with chemo to follow after 2 month recovery. Would take approximately 6 hours of surgery. She does not do robotic because eyes and hand mo ing and checking other organs and nodes do not up well with robotics. She said that they would also take out the omentium because MMMT liked to go to fat cells. I told her oh **** I am in trouble then since I am overweight. She xid not know how to take that. My sister, daughter and life long best friend where ther when I went into surgery. My gyn dr came by to before my surgery to let us know that Dr. Lea was one of the best and I was in good hands. It only took 3.5 hours of surgery and Dr Lea told my family that it looked like it was contained to just the one tumor in the uterus but she had taken several nodes but we would have to wait for the path report. Path came.back that tumor was in the uterus but 1 node had 2 cells which means it had spread. Went through 6 carbo/taxal treatments no radiation. 3.5 years later doing ok. I think not thinking about having cancer was to my benefit. I do know that it is hard doing all the what ifs when dealing with cancer and during the waiting time, I have done it to but I try to keep a positive attitude and do not go there that much. None of us came the worlx with a sign that states an expiration date so none of know when our day will come. Take it one day at  time and remember to breathe. Trish

CJHCJ
Posts: 8
Joined: Mar 2015

Hi 

Thanks for the input on playing the waiting game.  By the time I get to surgery it will have been 2 1/2 months and a few days more since the initial pathology that showed adenocarcinoma.  I have 2 weeks and a few days more that I have to wait.  So far I feel like I have been a good "waiter" but I am starting to reach the edge of being able to gracefully wait.  Everything feels so on hold right now.  I am doing lots to prepare for recovery time.  Do you guys feel like some of this experience can put you into a melancholy type mood?  I kind of feel like that is where I am...interspersed with periods of optimism.  I have been so tired to which I think the melancholy thing can kind of causes.  I agree that if it was urgent in the docs. opinion then they would probably move more quickly.  I also agree the uterus is this monster of a muscle and does a good job of holding things in... I seriously doubt that any growth that has occured has done any new damage at this point.  I am just ready to get it going.

Connie

Kaleena's picture
Kaleena
Posts: 2037
Joined: Nov 2009

Its the worst!    I had to wait 7 months prior to getting my hysterectomy (they didn't know I had cancer at the time) because they wanted me on lupron to make the surgery go better.   Then when I had a recurrence 4 years later, I was tested positive by a biopsy, but I decided to change doctors and waited two months for the new doctor.  The new doctor had me scheduled for surgery a month later.  I went for the surgery and my doctor got sick the night before my surgery (and after I had taken the prep stuff!), so I had to wait another month.   That time, no cancer was found except microscopic cells in one lymph node, not the mass.

Hang in there!

 

Kathy

TXBlue's picture
TXBlue
Posts: 3
Joined: Feb 2015

I agree that waiting seems like the worst part. I still don't have a diagnosis after heavy bleeding last November, still spotting off and on, 2 sonograms, 2 biopsies being referred to a GYN Oncologist and a D&C/hysteroscopy. The GYN Oncologist gave me a choice of another D&C or doing a diagnostic hysterectomy. It's a no-brainer. I am ready for the hysterectomy. Not sure what is going on other than my uterine lining is 10 times the normal thickness and I have "masses" in my uterus. Cancer can not be ruled out at this point according to my Doc. Work, family, and projects around the house are keeping my mind from straying into areas that I would rather not visit. My surgery is scheduled for April 6th. Ready for the recovery to begin. Try to stay positive and upbeat. Prayers are with you.

CJHCJ
Posts: 8
Joined: Mar 2015

Thanks for all the encouragement everybody!  Less than 2 weeks out.  I feel very ready for all of it to be out and get more definitive information about what is going on.

txtrisha55's picture
txtrisha55
Posts: 686
Joined: Apr 2011

How are you doing?  Any new news from any of the drs? Been thinking about you and praying for you. trish

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

Oh my goodness, I think waiting was super hard! But the waiting is do-able.  I had two kinds of waiting categories.  5 years ago I had an aggressive uteine cancer that required immediate and simultaneous chemo and radiation, and surgery later on.  I wanted everything fixed "yesterday" so I could feel like myself again, as soon as possible.  But I was inoperable until the tumor shrank from the treatment.  So I was under treatment from July to November of 2009, with the surgery in November.  I hated waiting and worrying about not getting operated on and what could happen in the meantime!  But the treatment worked and I had my surgery eventually.  The other kind of waiting that also is stressful is waiting for the results of various tests, CTs, findings, etc.  I still dread that kind of wait, and immediately feel a great sense of relief once the results are in.  It's like a rollercoaster ride, but now it is much less frequent...thank  goodness!  Just thought of a third kind of waiting - the waiting to heal up from the treatment and get back to feeling good.  Some things healed up fast for me, but other things took more than a year post-treatment.

Sending good vibes your way  :0)

Susan

txtrisha55's picture
txtrisha55
Posts: 686
Joined: Apr 2011

After all of that the gyn onc dr should be able to give you some information. With a name of TXBLUE if you are in the DFW area go to UTSouthwestern Hospital in Dallas. Get a second opinion. But if your surgery is finally scheduled go through with and get the results. Get copies of all of the results and reports. Ask a lot of questions. Be your own advocate. It is your life. Sorry, I get kind of frustrated with the system and the drs when they do not help the person going through. My dr has been so good with me and my family answering all our questions and being up front about everything since day one. If you do want a second opinion I can give you her name and number. TX trish

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