Here go the nerves again

tattooedtxgirl · October 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 · October 2013

I hate the "the doctor would like to see you call"

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>>

jazzy1 · October 2013

Wow we all can relate to the "nerves" going wild!

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

Ann55 · October 2013

Oh girl I can honestly say I

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 · October 2013

NoTimeForCancer said:
I hate the "the doctor would like to see you call"
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>>

Great support here

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

tattooedtxgirl · October 2013

Ann55 said:
Oh girl I can honestly say I
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!

Many thanks

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

tattooedtxgirl · October 2013

jazzy1 said:
Wow we all can relate to the "nerves" going wild!
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

Companions like you

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

Kaleena · October 2013

tattooedtxgirl said:
Many thanks
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

Thinking of you, Crystal

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 · October 2013

Kaleena said:
Thinking of you, Crystal
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

Please know

Im thinking about you.

Kathy G. · October 2013

ConnieSW said:
Please know
Im thinking about you.

Hi Crystal!
I also wanted to

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 · October 2013

UPDATE

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 · October 2013

tattooedtxgirl said:
UPDATE
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

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?

NoTimeForCancer · October 2013

tattooedtxgirl said:
UPDATE
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

You can do it!

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 · October 2013

tattooedtxgirl said:
UPDATE
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

*Hugs* I know its not the

*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.

Lisa 00 · October 2013

internal radiation

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 · October 2013

Lisa 00 said:
internal radiation
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.

treatment

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 · October 2013

ConnieSW said:
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?

family overload

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.

tattooedtxgirl · October 2013

Lothose said:
*Hugs* I know its not the
*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.

HUGS

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.

tattooedtxgirl · October 2013

Hybridspirits said:
treatment
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

Sharon and Lisa

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

Double Whammy · October 2013

Hybridspirits said:
treatment
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

I'm confused

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 · October 2013

Double Whammy said:
I'm confused
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

Aha, I'm no longer confused

our posts must have crossed.

Suzanne

Here go the nerves again

Comments

Discussion Boards