CALLING ALL STAGE I SISTERS

Joan811

Sheila - loved the moon pic and the duck hug made me LOL.
Bonnie fighter girl - welcome to Stage 1 and good luck with the onco score.  Decisions are so stressful so I hope you get a low low score.
Mac - I couldn't have waited for results - I got my biopsy results at the radiologist lab before I saw a doctor.  I waited for the surgeon's report and she said I was "fine" - not good enough...I had to know the details.  She was surprised.  I got complete reports as I went to other doctors for 2nd opinions.
My MO was/is the least helpful person I've ever met.  She has not said a word to me since she told me to make up my own mind about chemo with onco score of 13.  Even when I called and told them I would stop Arimidex because I was having chest spasms, I never got a call back.  Just the nurse told me "it's ok to stop"....that was it.  No follow up.  Routine appointment coming up in February.  I do not know why I will bother.  Once I turned down her chemo, after agonizing for 2 long weeks, she dumped me.
Moose - so sorry it's back.  I love your outlook -- stay in touch because it is here that we share our joys, sorrows, understanding and a listening ear always.
Isa, I can't comment on chemo.  Radiation for me was easier than I thought. I finished a week ago.   I had anxiety every time I went; but my skin stayed intact and am recovering very quickly.  I had swelling where they treated and it's almost gone.  Itching was the worst but I got a good steroid cream.  The commute to the center was very tiring, and radiation is draining like being in the sun without protection.  Good luck with your upcoming test results and decisions.

I spent the day at the hospital getting pre tests for my heart cath next week.   I didn't like being back in a medical center just a few days post rads.  I need a break but not to be.  My first class starts Monday; am working Tu & Wed, then Thurs the hospital - maybe I'll get home that day.
I just want you to know that I am sewing up some B-I-G pockets for the cath day...
HUGS to all

Joan

Kaara

isa:  So very sorry you are fighting cancer at such an early age.  From looking at your dx, you will definitely need to do rads, and based on the outcome of your onco score, possibly chemo.  As I'm sure you know, bc in younger women needs more aggressive treatment.  

As for the SE's I don't know because I'm still waiting to do my rads and no chemo for me due to my good score.  You can go to any of the forums that talk about chemo and rads and learn all about the SE's there, but don't assume that you will be effected the same way..everyone is different.

All the best to you....I pray your score is on the low end of the scale and that you have the a positive outcome from treatment. 

sheila888

Welcome isa

Side effects are soo diferent for all of us and depending what type of chemo if you will be put on.

Let us know the outcome for your test.

Hugs

♥

hawk

Welcome to all the new people. So sorry for you have to be here. This is a great caring and supportive group.



Isa and Bonnie fighter girl - praying for a low oncotype score for you both.



Mine was 14 so I have a pass on chemo. I did start rads this past week. I am on 4 of 35. So far, I feel good except that I am very tender/sore but it is manageable.



Joan - will be in your pocket with prayers.



Hugs to all.

sheila888

Joan......This is for you........please remind the date again 

Hugs♥

isa143528

Thank you.
I know it is diiferent for everyone, but I'm thinking first stage has similar treatment , not so hard, I think.
I'm thinking to take Chemo anyway. I am not that optimistic.  I'm mostly affraid of my riscky age(below 35). I got used with my diagnostic and now I'm again very afraid about Oncotype result. I will be very scared if I will have a high score I'm not that wooried about treatment, I just wanna do the right thing to live for my kid .

macatacmv

This site is what's keeping me sane. (well relatively speaking). I follow along on all the different journeys we are on and cheer and weep along with you! I don't always post because I am so confused.

I got so sick so soon after the surgery that I haven't had the strength or energy to pursue getting the path report faxed to my pcp which I had to do with the first one from the biopsy. I agree that the medical profession has to do a better job at communication. I have a hard time believing that they don't realize how this dx makes our lives feel unmanageable. I too am hoping there is not much to say, but the terminology on my paper work does not match what they told me before the procedure and on my patient gateway site there is another procedure listed that has not been discussed. Am I crazy or should this be more understandable. Also do all techs and nurses have to be so perky?

Joan811

Thanks Hawk, Thanks Sheila, love the dress.
Thursday is my next adventure...as if BC isn't enough!
mac - I am beginning to see why you are confused - but I do not understand why the communication is so poor on the part of your medical team.  Usually when you fill out paperwork, they take your pcp's info one time and send everything automatically.  You should not have to be worrying about that.  Or your pcp can call and request it. 
If you feel up to calling your dr. office, you can leave a message with your questions I always get a call back, but usually it is a NP.  It is important to understand as much as possible about your dx so you do not worry or stress unnecessarily. 
About the staff being perky - they see a lot of really difficult situations.  I think they have to compensate in some way.  I really hope you feel better soon and get the explanations you need.
Knowledge is power - when we know what we are dealing with, we can do it better.
Thoughts & prayers and gentle hugs for you!

Joan

PS - who got snow today?  I love how beautiful everything looks outside. 

TinaT

Welcome to all the new ladies here.  Makes me so sad to read of newly diagnosed women struggling to get information.  I have had bad healthcare experiences in the past, but since my BC diagnosis I have been so fortunate to have a whole lineup of great and compassionate docs.  I sure wish it was like that for everyone!

Had my MRI the other day to evaluate some post-exchange lumps.  Those areas look good on MRI, but a third area showed up that I can't feel and didn't show up on ultrasound...argh!  "Probably benign" but I have to go back for another ultrasound in 3 months and another MRI in 6 months.

MO, BS, and PS appointments next month....

Kaara

It is so important to have good communication with our medical teams...I don't know what I would do if I couldn't get answers promptly.  My new PCP is excellent.  She ran add'l blood tests to check my liver enzymes which were high on the pre op test.  I was nervous about it, and yesterday, I got a letter in the mail that said the new tests had come back in normal ranges.  I thought that was a wonderful way to communicate that information.  I didn't have to call and beg for the report, or go back in and discuss.

Tina:  Not to worry you, but my suspicious area did not show up on US either, but when biopsy was done, it was IDC, so I wouldn't wait more than 3 months without a biopsy, particularly since this is not your first bc. 

isa143528

Tina, I have a very bad experience with 3 months ultrasound. I did it for 9 months. Every 3 months checked with 2 oncologists and 1 endocrinologist. I have my feeling that it was in situ exept last 3 months, when the change was evident. 
Nobody sent me to biposy. One doct told me that is time to have another child now, if I want one more, first time when I discovered the "fibroadenoma"(their opinion).

Good luck to everybody! Are you optimistic, ladies?

TinaT

Kaara and isa - Thanks!  Doc called me first then posted in my online records (after hours).  This all happened at about 5pm on Friday so still have to discuss results with BS and PS.  I had BMX and implant reconstruction and have been warned there likely be some scar tissue, lumps and bumps that will crop up.  So far I'm very pleased that the two palpable lumps are seriously being checked out so I know this new area will be taken seriously as well.  Thanks again for your encouragement.  I'm a firm believer in listening to that little voice inside!

sheila888

To All Sisters♥

Judy67

That's pretty cool that you can see your records online.  If that is available to me, no one has ever mentioned it.  I try to get copies of everything for my own records though.

TinaT

Judy67 - I initially had very mixed feelings about online results, but I've gotten used to it.  Unfortunately, in my health system not all doctors are on board yet so not everything is accessible.  Only one of my docs uses it so only the things she orders go online.  Also, I am told nothing "cancer related" is automatically posted so if it's labwork and the diagnosis is breast cancer they won't post that unless the doctor does it him/herself.  Presumably, this prevents patients from reading potentially bad news online before they have a chance to speak with their doctor.   

Sherryc

I have one dr that does the online records, but will not post results of test until he has gone over it with you. But was very suprised the first time I saw him my notes where online the next morning. I really like being able to read the notes the Doctors right.  I get copies of all testing from other Dr's but not the notes except for surgical notes.

FireKracker

OMG this thread is bursting with newbees.damn this bc.

welcome to the best thread to be on.The sistas are just great.

missed everyone for a few days.went to pa to visit the family....

gotta try to catch up on all my threads.huggggggs everyone.K

Judy67

Granny, hope you had a great trip.

sheila888

My last Oncology visit with this office today.

I know where I'm going...should i wait for a while or make an appointment with the new place.....

my oncologist was on vacation and i saw his son they work together. Very friendly young DR.

He told me that the reason his father was seeing me every 4 months after so many years because i was HER+.......He thinks the new DR will see me every 6 months or once a year.

I get my Tumor marker test results tomorrow. Last time was 25.

granny i was almost calling FBI for your disappearing....

Annette ♥....where are you?

Kaara

Welcome back granny...hope you had fun!

samsue

Just stopping by to say hi to all the new ladies... welcome! Glad you found our thread.

Sheila, I get confused about how many times the dr's want to see us... My RO I see every 6 months but the MO I saw at the initial after diagnosis meeting then again in 6 months... since I didn't/can't do the A's she didn't want to see me for a year. My cancerversary is 3/10 so I'm wondering if I need to see someone else. Not easy here since the offices are all linked together. I thought when I switched from the first MO I interviewed that I was getting a different office/mo but they were all from the same practice.... just different locations. The RO does everything for me.... MRI's, blood-work, test, etc.

There is definitely not a protocol for whom and when you're being seen.

sheila888

Samsue.......I don't see RO. I only saw him when i finished and a follow up.

BS once a year you are right they all do the same thing.

Sherryc

Granny welcome back we missed you!!

Joan811

I find the doctor thing very confusing.  I am coming up on 6 months post surgery and I have an appointment with BS.  I also have a follow up 6 weeks post rads.  I also have an appointment with the MO (who has never had anything to say to me)....and I have an appointment with another MO who I like better but is not part of my "team" at MSK.  All that said, I have never even once been aware or felt like I even had a team.  In one way I guess it is because I am early stage and not interesting or challenging as a patient.  The problem is, if I have any concerns, lumps, etc., I do not know who to call.  I cannot imagine my RO being the one to follow me.  MO should because she prescribed Arimidex; however, does not speak to me ever even though I self-stopped the drug due to cardiac incidents.  She never calls back ever....lets NP do all.
I suppose the BS would be the one to check out lumps.  Who prescribes my mammo from here on in?  Gyno?  I am confused.
It seems every day I hear of another person with cancer.  Dear young lady in my church has mets to liver and lung; but topped treatment there due to 4 new mets in brain.  She had the same rads team as i had....am so worried about her.  I hate BC.
Had my first full day back to work and classes today.  I am so exhausted. Next week starts day and night classes....12 and 14 hour days twice a week,; probably what made me sick to begin with. Sorry to be so negative....I think sleep will help!
Nite all....
Joan

Sherryc

I don't see my RO any longer.  My MO does everything for me.  Orders all my mammo's and does the bloodwork.  My gyno does my pap smears and vaginal exam and sometimes additional blookwork.  I will have a follow up with BS this wed from surgery 3 months ago but then will not have to follow up any longer after that.

Valjean

Welcome back, K.

Hi Samsue, haven't seen you in a while, I think. I'm crazy today, had a bad headache.

annettek

Hello to everyone new- so sorry you had to find us:(



Ah, I've been away in my mind as now facing the fact of divorce - I know in my gut it is right and the best just hard after focusing on him for over three decades. I'm in psychic pain right now - and keep hurting myself by paying with the what ifs - hard to swallow that I chose to see the good and the bad as good for so long. Bc was the first thing in our lives that was major dilemma about me and I had nothing to give - the whole point in being with someone so long is ya count on the whole sickness health thing- when I couldn't kiss his ass anymore or paint a rosy picture - he booked - on my dime - he doesn't see it that way - 8 months gone - now he has found another - stating she is NICE- and I am not - and that he wants to see where relationship goes but who knows him and i might have a better one down the road WTF - he said that he gave me chances while he was gone and I was always an emotional wreck - she's a fellow AA member- which is how most land up after divorce - with another AA. He is still delusional that he is supporting himself as he is living on the cash he insisted on after selling other house he demanded half or he would not sign the paper - trusting fool I am - but I had to do it as two mortgages for two years was breaking my back - he has sped through two thirds of it in two months - I have to move forward before it runs out and his reality sets in - that Annette took care of those pesky details - I haven't had the heart to cut off insurance - auto and health yet- so damn used to taking care taking care - as I slowly have gotten my bearings emotionally - still pretty fragile- and asked more accountability he said I was rushing him- roflmao (and crying my eyes out) I told him I would have divorce papers here last night and he cancelled now it is to be tonight - well see - I'm not sure he understands that it is real and not part of some fantasy that I will get over- I have threatened many times too many times and on Sunday demanded a resolution that this was frigging ridiculous indulgence - to sh;t or get off the pot . I asked him point blank that if he was done lets get divorce if there was no interest in counseling etc that we should end it - which I've said a million times - he said ok - as he has before - then proceeded to tell me how bad he was hurting and did I think I was the only one who was sad? Something had made me recoil when he hugged me a week ago and I didn't know why - so I asked if he had started dating - to which he said yes -see above- I must have felt it on a primal level when we hugged - and that is what made me stop from where that even during all the bullshit has led in the past while he has been gone - first time I said no - no thanks - a small step of reclaiming some sense of self - I feel like a frigging idiot - not over his leaving and being who he is - it is that he has always been weak and I chose to see him as I thought he could be - he resents my career - and says bc has nothing to do with his leaving to which I said on Sunday the truth is it does - not how I look - probably look better than I have in 20 years- it is that it turned focus off you and I just couldn't keep up being cheerleader to a losing team - that besides bc there was the small matter of paying for everything and everybody - and our two sons - hard to be real nice - he said you weren't nice before bc - always cranky - I said well yea a bit tired - I can still see him waving to me with his morning coffee from the hot tub when I left for work..... Ack sorry for going on - but I'm sick of keeping so much inside or telling it to him who doesn't see reality - ill be ok better than ok for he is right in many ways - when says we don't work as-couple-his goals are surfing skateboarding and now climbing the cliffs inwyoming and working out with kick boxers- while polishing his jet boat - mine- dumbass that I am has been to work and take care of it all - not much time for me and the hobbies he says I need flicking exhausted at end of day - I still would have gone on with this freaky situation as I know myself but the tipping point was the dating - it was what I needed to finally pull my head out of the sand completely - god bless them with their free self employed schedules to do whatever - I gotta move on - what a surprise to find even I have limits - wish me luck my friends- its gonna be a little rocky but I want this done in the 61 days it takes in Texas - if he he won't sign papers tonight I go to attorney - and as hard- yes still hard not to take care of him if you can believe it but 35 years it gets to be habit) I will cancell all the insurance on him- ill be called mean and bitter but that's how I have been treating myself - I'm scared but I think I can do this - I have to - there's a lot more

Life to live

Again sorry but ad to get this out
It hurt too bad to keep in

Kaara

Annettek:  OMG...I feel so bad for you, and I know what pain you are in right at this moment.  Being married for that long and having it end cannot be good for anyone, regardless of the circumstances.

It sounds like this guy has had a free ride for many years and now it's time for him to find out what life is like in the real world.  Don't be afraid to cut him loose...there's a whole world waiting out there for you and it ain't all bad!  It sounds like you are the breadwinner, so financial security is not going to be an issue.

 Is Texas a community property state?  It's either that or equitable distribution...either way, you will have to give up things you have paid for and accumulated over the years...remember it's just stuff!  IMO you should have an attorney to represent your interests.  You have a lot more to lose than he does so you have to protect yourself.  My last divorce cost me a lot of money, and I learned a good lesson about marriage...not worth it.  I now have a nice boyfriend...we've been together for 13 years, and we do not plan to get married.  He has his money and I have mine...never the tween shall meet!

You will look back on this as the best thing that ever happened to you.  He is trying to play both sides of the fence right now...until he gets established with his new girlfriend...doesn't want to give up his meal ticket!  I know those are harsh words, but they are true...believe me...I know the type!  Move on and make a decent life for yourself, you deserve it.  I'm a different person today than I was twenty years ago, and it's for the better!

Prayers that you will find the strength to get through this challenge! 

hawk

Annettek - I am praying that God will give you peace and strength through this challenge.  I read in a book (I will look up the name of the book tonight) that people who tend to hold things inside have a greater tendancy to develop cancer.   So DON't hold it inside.  Get it all out girl!!!  Sending HUGS and LOVE

chabba

Annettek -  (((((hugs))))), strength, peace and love.