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Here go the nerves again

tattooedtxgirl's picture
tattooedtxgirl
Posts: 61
Joined: Sep 2013

I knew that my surgery was possibly not the end of this journey.

Today the surgeons office called and are pushing me into their busy schedule tomorrow.

I have already made my follow up appt for Nov. 4th. The suregeon told me that I would not see him sooner than my follow up unless he felt further treatment was needed.. otherwise his PA would call with pathology results.

Now all the nerves atart again.

I will go in tomorrow at 3;30p. 

NoTimeForCancer
Posts: 435
Joined: Mar 2013

It usually means something, but one step at time and you know WHATEVER it is, the warriors here will help.  It could mean anything, so take some deep breaths and come back and let us know.  While you have your loved ones with you, there is a whole world out here who supports you as well.

Let us know.

<<HUGS>>

tattooedtxgirl's picture
tattooedtxgirl
Posts: 61
Joined: Sep 2013

I will keep you ladies posted. 

thankful for all of you. I have made it this far and shall keep movin forward.

I'm thinking too many things and need to unload my wagon. lol! I have def let it overflow with too many 'what if's'

I do tend to overthink things.. today was def. one of those moments. It just threw me off guard i guess.

I will take deep breaths and wait till tomorrow... let my Dr. tell me whats next.

 

Hugs

Crystal

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Been there, done that one my dear!  Wish I could tell you it's all easy, but it's just part of the journey.  As you, I seem to get the cart before the horse and run away with the negative thinking of it all being cancer.  Try to stay calm, but as someone else mentioned bring someone with you for support.  In fact, have a sheet with questions you might have assuming it could be cancer or not.  I ALWAYS bring my list no matter what might happen at the appoint as we don't always have a captive audience with our docs face-to-face.  

 Remember we are all here for you, so ask away and we can guide you as best we can.  Life isn't easy, but surely much better with companions like us.

 Best of luck and we'll be expecting to hear your update soon,

Jan

 

 

tattooedtxgirl's picture
tattooedtxgirl
Posts: 61
Joined: Sep 2013

Jan,

 

I do let me cart get full before it's time. I'm working on keeping calm and taking things as they come. It is crazy how fast everything seems to happen. I just had surgery 8 days ago.

I HAVE to take someone with me Jan.. Every appt i get 'dummy' brain. I NEVER remember my appointments, or what I need to.

Thank you for all of the kind words and support. It means a lot to have the support.

I have a good support system..but I find comfort here. Sadly, because you ladies are in similar situations and i feel can relate a bit better. I don't always want to tell my boyfriend everything..we are very close..have known each other for almost 20 years..I hate the worry in his face. The reality that he is just as scared as I am.

This is where I come to find relief.

I will keep you ladies posted for sure.

Many well wishes and hugs

Crystal

Ann55
Posts: 42
Joined: Jun 2013

Oh girl I can honestly say I know exactly how you feel. I was shopping when I got a call saying the doctor wants to see you today. I'll be thinking of you all day especially at 3:30,good luck!

tattooedtxgirl's picture
tattooedtxgirl
Posts: 61
Joined: Sep 2013

Thanks for the support!!

It means a lot to have a place to come and be able to vent and ask questions.. and find comfort in a time when we need it the most.

I will keep everyone posted as I find out.

 

Wishing everyone the very best!!

 

Crystal

Kaleena's picture
Kaleena
Posts: 1063
Joined: Nov 2009

Crystal:

 

I hope everything went well today at your appointment.   I hope the doctors didn't use the scare tactic to make you do something quickly.  Just know, if there is something you are unsure or it just doesn't feel right to you, please get a second opinion.

 

Sending you support and wishing you comfort.

 

Kathy

ConnieSW's picture
ConnieSW
Posts: 568
Joined: Jun 2012

Im thinking about you.

Kathy G.'s picture
Kathy G.
Posts: 116
Joined: Dec 2012

Hi Crystal!

I also wanted to let you know I have been thinking about you...following your posts up until your surgery. Glad all went well on that front and hope anything you hear is not as bad as what we can conjure up in our heads.

I always swear the waiting is the worst as I go thru that period of anxiety where I am freezing up or numbing out or I can't turn my brain off. But then reality and reason kick in and I realize it is always better to know...better....... but not neccesarily easier.

Let us know how you make out when you're ready...

Kathy

tattooedtxgirl's picture
tattooedtxgirl
Posts: 61
Joined: Sep 2013

Surgeon told us yesterday that all 4 lymph nodes came back clean, pelvic washing came back clean, all tests show NED....

However, the tumor started to invade the uterine wall and the surgeon isn't comfortable with my reoccurance chance.

He wants me to do internal Radiation once a week for three weeks and chemo once a week for three weeks. 

I don't go back for my follow up till Nov 4th. Surgeon said he'd like me to start treatment last week of Nov.

Still not sure how I feel. HAPPY for NED for sure!

This process is a trying one.

 

Hope you are all doing well!!

Hugs ladies,

Crystal

ConnieSW's picture
ConnieSW
Posts: 568
Joined: Jun 2012

Oh, Crystal, when you didn't post right away, I was afraid you had gottEn really bad news.  This sounds doable.  What stage did they give you?  What kind of chemo?

tattooedtxgirl's picture
tattooedtxgirl
Posts: 61
Joined: Sep 2013

Sorry for the delay,

I've found it hard to get online this week.

I'm waiting on copies of my pathology report..my surgeon failed to mention stage and I failed to ask in my poopy brain mode. lol

He mentioned the 'usual' taxo/carboplatin. We had the 'hair' talk... Surpise to me... I don't care. Life is far more important to me. I will buy a nice wig and await my new hair.

He says I should be done with treatment by Jan end. Does seem doable. He said there is a chemo class that he wants me to take, will explain things better to me. He is SUCH a surgeon...leaves me hanging on certain issues(dryness and iritability) said we will talk therapies down the way..that I'm not ready for anything like that. and never any estrogen.

Still a lot to learn. Each day is a brighter new day.

<3

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

The start of the journey is an awaful lot for any of us to remember...so don't be hard on yourself. I always have a list of questions with me and bring my hubbie as his ears are much better then mine when it comes to my health.  

Sure sounds like a very early stage, now you'll need the pathology to find out grade/type of cancer such as MMMT which is mine and very aggressive.   From here docs can better give you the type of protocol treatment plan.  I had 33 external pelvic radiation treatments and I felt it was much worse then chemo.  Ask lots of questions of any of the treatments and ask if you have options?  Now if you in any way don't feel comfortable with what they suggest, do not be timid but get a second opinion.  Most insurance co's pay for 2nd opinions, plus you'll be more at ease to compare opinions.

Just put one foot in front of the other and you'll get there just like the rest of us.  

 WAIT IS A 4-LETTER WORD,

Jan

NoTimeForCancer
Posts: 435
Joined: Mar 2013

It is hard, but look where you were when you started on this journey to where you are now?!  Wow!  You can do this too.  We are "hear" for you, the good, the bad, the questions. 

Mine (unbelieveably) was caught early and I saw it more as PREVENTATIVE as TREATING. 

Lothose's picture
Lothose
Posts: 18
Joined: Aug 2013

*Hugs*  I know its not the news you were hoping for, but I am glad that it is also not the news you were dreading.  You can do this!  And you have all these fabulous women here to help you do it. :)

tattooedtxgirl's picture
tattooedtxgirl
Posts: 61
Joined: Sep 2013

Thank you! :)

I can do this..and you can too! 

And, DITTO, there are some fabulous ladies here!

Thanks for all the love and support.

 

Lisa 00
Posts: 108
Joined: Jul 2009

Crystal,

If I were you, knowing what I know about internal radiation, I would really educate myself as to what my situation is and if I really needed 3 rounds of internal radiation.  I suppose what I am really saying, is that I think you should consider a second opinion. 

It sounds like your uterine cancer (endometriod adenocarcinoma) was not that advanced, but I really can't tell.  Mine was stage 2B, positive washings, 75% wall invasion into the uterine wall and it was into the cervix.  I only got 2 internal radiation treatments which left me with a myriad of permanent 'changes'.  (I also got 5 weeks of external radiation and 6 rounds of chemo)  

Three internal radiation 'treatments' sounds like overkill to me.  I'm just trying to warn you about the negative effects of internal radiation, which they won't really tell you about, and my feeling that you may find a second opinion helpful.         

Hybridspirits's picture
Hybridspirits
Posts: 150
Joined: Nov 2012

I agree that it is important to understand the reasoning for your individual treatment options.

I do know from my conversations they take into account:

the type - MMMT versus non, if non than what grade

the size of the polyp or tumor

how far it went into the wall

lymph node review, how many did they check as they don't check them all

washings, lymphatic invasion (you can see this from your copy of the pathology report

 

Based on this they should be able to help you understand what your treatment is attending to

 

i do know that different places do the internal radiation differently but in the end the dosage might be the same. For example I had 3 internal and Dana Farber would have done 6 with 1/2 dosages.

Another point is everyone is different, some folks have issues from the internal and others don't as I haven't.

but asking and understanding should make you feel good about the treatment. If it doesn't make sense you should seek a second opinion as I did and was glad i did

But all in all the outcome is looking mangeable, which is nice

Sharon

 

 

tattooedtxgirl's picture
tattooedtxgirl
Posts: 61
Joined: Sep 2013

Thank you ladies!

I will def do my homework, and will ask questions.

I am waiting for my copies of the pathology report.

My surgeon will send me to a radiologist, I will grill him on the treatment. 

The tumor was 5cm..he said a bit larger than he had thought and that it was invading the wall. I'm not sure yet how far the invasion is. Pelvic washing were clean, 4 lymph nodes were clean.

I don't start treatment till end of Nov. I will be ready by then, I hope.

I'll keep everyone posted.

Please feel free to inbox me if you'd like to share.

Hugs,

Crystal

NoTimeForCancer
Posts: 435
Joined: Mar 2013

Crystal, better to wait and get the full report.  Let us know if you have questions then.  Find out your pathology (who knew there were so many types - right?) and what the plan is.  Plenty of time to ask questions. 

Love your attitude on the approach and regarding your hair!  I cried like a baby.  Looking back, it really doesn't matter, but at the time it was one more thing to deal with. 

Double Whammy's picture
Double Whammy
Posts: 2276
Joined: Jun 2010

But I'm also so relieved that while further treatment is being recommended, your disease sounds very treatable.  Are you still considered Stage 1?  As Sharon outlined above, the type of the cancer (Type I - endometroid adenocarcinoma vs. Type 2 (UPSC, MMMT, etc), the grade, size of the tumor, your age, lymph node involvement, etc and very importantly, how far it penetrated the uterine wall are key factors in recommending adjuvanct treatment.  Do you know all this information about your cancer?  Do you have a copy of the pathology report?  You must have other risk factors for recurrence than just a little bit of uterine wall penetration?????  Like a higher grade or type ????

Good luck as you move forward.  I hope you do that armed with all the information you need whether that involves a second opinion or not.  I just have to add that chemo is very doable (I had it for breast cancer), but it is also a very serious and risky experience.  We all say it wasn't so bad, but most of us sure hope we never have to do it again.  I have heard there are many issues with internal radiation, but I'd do it in a heartbeat if I felt it was necessary to save my life.  Same with chemo.  Just be comfortable that it's necessary.

Suzanne

 

Double Whammy's picture
Double Whammy
Posts: 2276
Joined: Jun 2010

our posts must have crossed.  

Suzanne

Rosestar570's picture
Rosestar570
Posts: 10
Joined: Oct 2013

You can also ask for a second opinion. Just keep it in mind. Sometimes it is the best thing to do when you aren't as comfortable with your current doctor.

 

http://rebelcupcake.wordpress.com

sunflash's picture
sunflash
Posts: 152
Joined: Aug 2011

Glad you're moving forward, Crystal! One foot in front of the other, one day at a time, and before you know it.....it's done! Once you get into warrior mode (you're already there) there's no stopping the momentum!

You're about to find out how strong you really are. And the hair thing......small price to pay for your life! Mine is back now (finished chemo Nov 2011) and is exactly the way it was before.

Hang in there, we've got your back!

Sending hugs and prayers......

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