please help

lvtwoqlt

Ulla, I am so sorry that you had such a bad reaction from the tamox. I know a woman on the boards that had a bad reaction from taking the 20 mg pill straight off. Her doctor agreed to let her build up, she cut the 20 mg pill in fourths (5 mg) and took one a day for about 2 weeks then went to half a pill (10 mg) a day for about 2 weeks, and she now takes it 10 mg in the morning and 10 mg in the evening. I took it for 6 months after the second abnormal pre-cancerious biopsy I had, then when I had my surgery, the surgeon took me off of it. the only side effect I really noticed was the night sweats and hot flushes, though my hubby noticed mood swings. I wish I could give you any stats on the percentages based on the hormone status. I know that I was told when I started taking it that it would reduce my risk from 20% to 10% because of the family history of breast and ovarian cancer, but the odds did catch up with me and I was dx with early non-invasive cancer 6 months later.

I am glad that your family knows now, but it is hard on them and on you because they cannot come and comfort you. It would be harder on them if they found out after anything else happened to you and they would question why were they not told sooner.

I need to get back to work, Dear Ulla, try not to worry and ask again about the antidepressents, tell all your doctors what you are feeling and stress that you can't make it without some kind of help.

Sheila

geebung

Ulla - you poor girl - I am so sorry you have had these s/es and then had to deal with your family's sadness. Honestly, I think it is sometimes more difficult to cope with our loved ones' reactions to bootface than our own. You have had a terrible few days (as if you haven't had enough of those!).

I too wish I could give you the statistics on Tamoxifen. All I can say (it was me with the 84% ER positive bootface although Melody might be the same) is that there must be so many variables that doctors consider when prescribing this medication. Family history, age, post or pre menapausal status, hormone status, grade and stage of bootface, etc etc. Mine was non-invasive and I had no family history so maybe that is why I am not on it (and I don't want to be on it!) but if I was told that I was high risk I would have to reconsider I guess.

Lots of love and peace-inducing thoughts to you,

Jane, xxx 

geebung

Karen, I was so sorry to hear about your niece's sickness but SO relieved to hear that they know what it is and that she will be alright. I have said a special prayer for the poor little girl and her worried parents and you. Sick children are right up there with the worst worries you can have. They are so precious to us.

Lots of love to you and everyone here. It is after midnight and I must go to sleep. (Yes, it's my over-stimulaing night class again - I will have some warm milk and hit the sack).

Jane 

AnnNYC

Dear Ulla,

I'm sorry you had to be the mother to your family -- I'm hoping that soon they will recover from the shock of the news and adjust into being able to help take care of YOU.  I hope your mother is feeling better today.

I have been trying to look up statistics for you, but most studies about tamoxifen are about Stages I and II.  What I found about Stage III women who already had mastectomy and chemo is a study in comparing tamoxifen-only versus tamoxifen plus radiation.  That study said, absolutely radiation reduces recurrence and increases survival, tamoxifen alone is not enough.

An interesting study about patient use of the drug in the U.S. said women are more likely to continue taking tamoxifen if they feel included in the decision, feel they have enough input from their doctor, and are told about side effects in advance.  Women who don't get these things are more likely to stop taking tamoxifen.

(Reminds me of an old Saturday Night Live Weekend Update joke: "as reported in the medical journal 'Duh'!"  )

honeygirl

Hi Ulla. I am taking tamoxifen. I started it Sept. 07. I was er+95% and pr 85% so I knew this is what I would do. My only hesitation was the serious SEs , but my doc checked me for a clotting mutation and another test , and it was OK. So I started it. I had a worse time deciding on chemo , and I declined to do rads. Everything about my dx was in the gray area , except for the high hormone numbers. So my oncotype test helped me decide on chemo. My score was 23. Which was still in the middle , but high enough for me to decide to do chemo. I'm so sorry you are having such an extremely difficult time with this. And I'm sorry about your family finding out. I know you didn't want them to know. And I'm sure it was an exhausting time trying to calm them down and explain everything. But now they do know and maybe you will get some help deciding since two of your sisters are doctors. Everything happens for a reason. And once they calm down from the shock of your news , they will be a big help to you. Why don't you pm Tender is out might? She does alot of reserch for this. She may even have posted it here on another thread already and can tell you where to go to read it. Love you Ulla , hugs and prayers to you.

my3girls

Hello sisters...checking in from work.

AE...I love your mantel!! I especially love the quote on there..notice mine here?  I too love my front porch...we love to sit out there...and relax and read the paper etc.  It's very private..now that the trees have grown so big.

Jule...we have not heard from you...how did your appt with the oc go?? Let us know.

Nancy...another sister who is one of 7 children!! Me, you and Ulla...wow...you don't meet that many people who are from such big families.  Where is your house?  Are you upstate NY?

Karen...I like what you are looking at to build!  I bet you are so anxious to get started.  Oh my gosh, when I read about Jada this morning, I got chills and my heart sunk!  So glad to read the next post to see she is better. How is she doing today?

Mel...darling...we need to set a date for our lunch!!!!!!!!!!  Let's get it on our calendar.  I am so excited to sit down with you!  I feel like we are such good friends already!! Have you given anymore thought to writing to Oprah about us?  I told Olivia that you had mentioned that...and she said..."oh mom...that would be such a great story to have on her show!" She  said..she would be crazy not to do it!!

Ulla...darling...I am so sorry you are so upset over the taking of the tamox.  Everyone reacts to drugs differently.  I agree that maybe you need to give it  some more time. If after a week or so, you still feel so bad from it...then talk with your oc about something else or not taking it at all.  Alot of women choose not to take it.

Melody does take tamox, we both do.

How do you feel about your dh telling your family?? I am sure that was very hard for you to deal with, especially your mom getting so upset and having blood pressure problems. Hopefully as it all sinks in to them, they will be stronger, and be there for you metally.

To all my other dear sisters that I did not mention...have a great day!!

xoxo

Lisa

honeygirl

Oh Karen! I'm so glad little Jada is going to be OK. Poor little thing. I'm sure you were really shook up. Give her lots of healing , auntie hugs and kisses when she is up to it. Jada , you and your family are in my prayers.xxxx Melody

NancyD

Lisa, 

I'm just across the Hudson River from Westchester County in the smallest county outside NYC, Rockland. It was very rural until they built the Tappen Zee Bridge in the 1950's. The NYS Thruway bore right through the center of the county and made it another bedroom community...bringing people like my family. LOL, we're interlopers.

Karen,

I'm so glad they found out what was wrong with Jada. Severe and sudden illnesses are so scary...they can slip away so quickly. 

Ulla,

How are you doing today?  I bet the phone lines between Sweden and Iraq and the AER are burning up with more calls. Please, now that your family knows, please let them help. Once the shock goes away, I'm sure they will be like all families and want to do as much as they can for you. You are not alone in this big world. There are people all over who are there for you.

Ladies, the moment has come. I have to leave to take my daughter for her driving test. My car may never be the same again...I certainly don't expect to see much of it.

Wren

Ulla,

I'm sorry it has been so difficult for you. I know it was overwhelming to deal with your family and their worries; but now you have their support and you don't have to keep this a secret any more.

About the Tamoxifen... I don't know much, but all my decisions revolved around my super sensitive body and allergies to so many things. I had DCIS (non invasive) and no nodes, etc...  The cancer cells were grade 3 and both ER/PR positive but verrrry little (low) numbes. One was 2% and one was 10% hormone receptor positive... My first reaction was, "oh good, I won't need Tamoxifen" but my breast surgeon said that anything above a 2% was considered enough to treat with Tamoxifen. Wow! I was surprised.

After much thought and visits with several specialists, I decided that for my body the best thing was not going to be rads and Tamox but a bilateral mastectomy so I could avoid those two things.

I hope you can find some doctors to talk with who will answer your questions. I went to a gynecological oncologist -- and I believe that would be a good doctor for you to consult. You can discuss fertility issues and the horrible side effects you felt from the first Tamox pill.

I also asked for a referral to a breast cancer psychiatrist -- who does nothing but counsel women (and prescribe medicine as needed) who are going through breast cancer treatments. I have to believe that there must be something similar where you live.

Of course, your oncologist will be able to answer the 'percentages' questions and the 'odds' of stuff, but you also need someone in your corner who is acknowledging your desire to have a child; your extremely sensitive body, and your need for a good quality of life.

Try to relax today; sleep if you can, go to spinning class, have a nice warm bath. You don't have to make this decision TODAY. Give yourself permission to take a 'mental health' break and take time off from thinking about this today.

I wish you the very best no matter what you decide.

Ulla

hi sisters ,,

yes dear nancy,,u r soo right ,,the phone bill of this month is going to be a trouble as it is easier for me to call them than they can do call me so they kpt call and lose it so i call back all the day,,my mother is lil bit better,,she is so depressed,devistated and DH feel so guilty now but i cant blame him ,,he had his weakness moment yday with them ,,my mom told me that he looked so depressed and wen she kept asking wat was wroung with him,,he burst into tears and wasnt able to talk for few minutes..

god knows it was more than hard,,but all in all they r really better today.

then mom asked to c me if i am really ok or just dont want her to c how awfull i am after all that treatment??so again i was with all of them online showing my ALLSELF..can u believe that..thank god she didnt ask to c my scar ,,i was putting my bra and the prosthesis with very good make up..it was the only thing that made her feel better and get her blood pressure lower,,

i forget to tell u that my brother also is a doctor who is doing his MSLE in cairo his fiance is a very beautiful american girl,,i think she is from newjersy,,

well he was trying to call me but i didnt talk with him yet,,

my 2 sister in UK and DUBAI were telling me that i have a logical point about the whole percentage thing..but they both said that i better to tell my surgeon next monday and go back to tell the stupid onk..about how bad was the SEs,,so they told me it will be really easier if i did just u told me dear sisters to build it up gradually ,,iinfact it was me who started and told them about the idea after u told me about it and they felt so strange that we as patients know that much ,,god inspite of all the three of them r my sisters and only brother but they just as erogant as every doctor  in the world they think that no one can think or know more than they do...grrrrrrrr

so i will give this a try after DH come back in 14th may that time i would have my meeting with the other doctor and then i think i will be able to make a final decission,,but i still wont take  it till monday..

dear sisters ,,i love u soo much and feel like that u r my family..

much love 

Ulla

ty wren ,,

it really helped me to read ur post,,wow everything above 2% ,,this is really intrested for me and can change so many things..

anyway as i said above ,,i will wait till monday and then till DH come back and c wat to do..

but i feel really better now,,both ways if i did took it or not i must be in peace of mind and feel comfortable to the decission that i will take,,

thanks again

portiasproudmom

Oh, Ulla.  You poor thing!  Having to deal with upset family members at a time when you're already emotionally fragile.  Well, at least you won't have to keep it from them anymore.  That had to be very difficult too.  I'm glad that your mom is feeling more calm today.  I'm also glad that you've decided to wait and not make any hasty decisions.  I certainly wouldn't blame you for quitting the Tamoxifen if it continues to make you feel so horrible.  Hang in there, sweetheart!  It's all going to work out.

Thank you all for your kind, supportive words regarding Jada.  I spoke to my SIL (her grandma) this morning, and she's doing MUCH better today.  She has good color and she's more alert.  I don't know how we could have handled it if something would have happened to that sweet baby.  I shutter to even think about it.

I'll bbl.  Love to you all!

Karen

honeygirl

Ulla , lol , you made me laugh about the arrogant doctors comment. I'm gald you made a decision , and when you're husband is back you will feel better having him there for you. I hope dh , your docs , and family can all help you so you can make a knowledgeable decision about tamox. Sometimes things move way to fast , and you need sometime to make an important choice as this.xxxx

Karen , sooo glad to hear Jada is better. Little ones can bounch back so fast , but it scares the daylights out of you when the feel that bad. Is she home or still at the hospital?xxxx Mel

my3girls

hello...still at work...checking in on Ulla.

Glad to see Ulla, that you are feeling better physicaly and about your decisions so far.  I laughed too when you said your siblings that are doctors are arrogant! My brother is a doctor too, and I love him dearly...but he can be arrogant like that too.

Miss Melody...are you avoiding my question sweety?? Waiting to hear back from you...I am patient....lol.

I can't wait to go home...but I have to wrap Olivia's b'day gifts.  I will bake her cake tomorrow morning after I get back from my run...and before I go to see my ps.  He is going to see if I need any revisions and talk about constructing my nipple.  For the most part...I am pretty happy with the outcome and his work.  Now, if I can just get these scars to fade faster.

xoxo

Lisa

livesstrong

Hi Ladies -

I just wanted to thank you all for your kind words about my house.  All of yours are amazing as well!!  Now whenever I think of you ladies I will picture you sitting at home enjoying your surroundings.  

Jane - that house is gigantic!!!  And spectacular!!  WOW!!

Nancy - is yours a split?  

Shirlann - yours screams California. lol

Ulla - I forgot to mention - there is one picture of yours where you look EXACTLY like Racheal Welch - va,va,va,voom!!!

I am so sorry you are having a rough time with the tamox.  But I must say, I am relieved that your family knows of your illness. Now you have nothing to hide - their love & support well help you in so many ways.

Did I read right? - Did you say your DH was kidnapped and you were almost killed???  You must tell us that story!!!

Sue- WHERE ARE YOU???? Have the elephants taken you away???  Sure miss you around here.

Sheila - when is your son arriving?

Gotta run - bbl,

AE 

Shirlann

My dear Ulla, what a mess.  But the love that shines so strongly in your family is something that is so wonderful, it is hard to feel bad about it.  Your mom will be okay, I kinda wanted you to tell her anyway, the main thing is that she understands that 90% of us recover and go on and live out our lives.  She is probably about my age, and when your mom and I were children, you spoke of breast cancer in whispers, I am not kidding.  It was almost always fatal, and that is what is worrying your mom.

So be sure you bring her and all the family up to speed on how much better treatment is today and that you will be fine.  I think you need their support, so while this was so hard, it just had to be done.  It is the right thing, just imagine how bad your mom and sisters would feel if you had never told them, they would feel even worse.

Tell your DH that it is okay, probably overdue, and he too needed the support from all of your dear family.

You will be better now, I truly feel that as bad as this was, it was the right thing to do.  Very little good ever comes from deception.  This is true.

So keep cheering them up.  Tell them you KNOW you will be okay.  And honey, you will. 

Let us all know how things are going.  Your mom is tougher than she looks, and she will be fine.  I almost died when my son had a heart attack, but I recovered.  I would have been deeply hurt if he hadn't told me.  Left out and sad.  So keep on, step by step, you will be fine. 

With much love, Shirlann

my3girls

AE...you are right...I just looked...it's been 2 days since our Susie Q has been on here.  Miss Sue...where are you??  Probably working your little butt off!  Check in please...we miss you!

AE...I think Sheila's son arrives Friday.

my3girls

Shirlann,

You amaze me!  That was so very well said.  You always know how to say the right thing about every situation.  You are such a comfort to all of us here.  I love you!

xoxo

Lisa

my3girls

Have you all noticed that our thread (at least I think so) has the most comments and pages than any other thread?  We are quite a group...and a chatty one!  How wonderful!

geebung

I think Sue is working, working, working - flat out like a lizard (or however that saying goes!). I hope you don't get too exhausted dear Sue. We will wait to hear from you in the next few days.

Ulla, I feel like the other ladies. Once your family gets over the shock, they will shower you with love and support. I think they will be a big comfort to you and you won't feel so alone. Yes, I have doctors in my extended family and a couple of them are soooo arrogant! But some are not so I don't want to sound prejudiced. I am so glad you are feeling a bit better about everything. I feel for your dh too - I'm sure he didn't mean to spill the beans but I think that, in the long run, he did the right thing - for everyone. You were so sensitive and kind to want to spare your family these worries about you but, as a mother, I would want to know what my child was going through - no matter how much of a worry it was. Big hugs to you darling Ulla.

I have a cute animal story. Yesterday, my son was driving to work along a busy road when a swamp wallaby (a small, kangaroo-type of animal) jumped across the road in front of his car and got stuck in a fence. He stopped the car and a man in one of the houses ran out with a towel. They were going to put the towel over the wallaby and try to free it but before they could do that, it freed itself and hopped away. Then they saw a tiny baby joey (young wallaby) curled up in the grass on the other side of the fence. (Mother kangaroos and wallabies throw their babies out of their pouches when they feel in danger and the babies curl up and wait for their mothers who return to pick them up when the danger has passed). Anyway, it was highly unlikely that the mother would return because this was on a busy road, in the middle of suburbia and their was a dog in the yard who was showing a bit to much interest in the baby (luckily the dog was old and blind so it didn't find the baby - maybe no sense of smell as well?!)

Heath wrapped the joey in the towel and brought him home to me. I don't think I have ever seen such a perfect little creature. He was the size of a kitten with light grey fur and huge dark eyes. I rang the wildlife people and they sent one of their carers around to collect him. She was such a sweet woman and has such a lot of experience in rearing native animals. She told me she has 11 joeys and 6 little wombats at the moment so 'our' joey will be in good hands. 

While I was waiting for the wildlife woman to arrive, I sat in my loungeroom and cuddled the little darling to keep him warm. Heath took some photos so I will try to post them here later. I get a lovely warm feeling when I look at the pictures - he was such a sweet little thing.

Love to everyone. I have an appointment so have to rush.

Jane xxx 

geebung

Oh Lisa - I do agree - Shirlann is the best! But everyone's comments have been so great. I am humbled by everyone's love, insight and knowledge. Love you all! Must rush!

livesstrong

Jane - what a great story - can't wait to see the pictures.

Shirlann- can you be my Mommy?????

Not sure who mentioned contacting Oprah - but if you do, definitely mention the Wizard of Oz connection - she is a HUGE fan.

bbl,

AE 

Shirlann

Oh yes, I would LOVE to be your mommy.  I had one sister and my mom.  My dad was not too good.  Sooo, we three were very, very close.  Then, I got married, and when I had my first baby, I woke up in a dark room (this was 1954) and I rang the bell and asked the nurse what I had had?  She looked annoyed, went away, finally came back and said, "A baby boy".  I said, and this is the truth, "Oh no, you must be wrong".  She looked at me like I was crazy, but the only close, close people to me were my sister and my mom, and I couldn't believe I had not had a daughter, so I proceeded to have 3 boys, my sister had 3 boys, I have 4 grandsons and one grandaughter.  Funny, life just comes atcha!

Now, I was a huge tom boy, and I truly loved and do love my boys.  All were very active in sports, and I loved every minute of those days.  Boys, huh?  One is 54, one is 50 and one is 46. haa, so much for the "boys" part.  But how I miss a daughter to talk to, the boys   think the phone is for messages, only.  And they have wives, well, we only have one left, and this one hates me (with good reason).  More later on the daughter-in-law from hell!   hahahaha

Hugs, Shirlann

honeygirl

Shirlann , I know I am prejudice , cause I love you and you are one of my favorite people in the world , how could anyone hate you?! That is absurd , and there has deffinately got to be something wrong with her. Love you Shirlann.xxxx

Hi lisa , no I am not avoiding you! I am sick today , stayed home from work. My allergies are getting the best of me right now. I forgot to answer you. The way its looking , June 6th will be my first available Sunday. How is that for you? Let me know. Can't wait to give you a big ole hug! Love you Lisa . xxxx Mel

honeygirl

Oh Jane what a precious story. I so envy you to hold the precious little baby joey in your arms! I would love to have that opportunity. How wonderful for you. I can't wait to see the pics. And what a compasionate son Heath is. You did good Mom!xxxx

Wow , I don't know where to start with my letter to Oprah. I guess I will just start writing and it will come to me.Do you think I should do it through the e-mail? I thought that would be best. Let me know what you all think.xxxx Mel

geebung

livesstrong

Mel - I think Oprah has a spot on her website where you can suggest show topics. Feel better.

Shirlann- Jane is right, how could anyone not like you???  What could you have done to that DIL of yours???

Karen - I felt so bad forgetting to ask about Jada, I'm glad she is better today.  

Well its time for me to hit the sack, quiet around here tonight - I guess everyone is doing the same. 

AE 

portiasproudmom

Hi everyone!  I know you're all probably in bed, but I wanted to  check in to let you all know that Jada came home tonight.  She's feeling much better and was even able to keep down some soup.  It's such a relief.  Thanks again for all your well wishes!  You guys are the best!!

Shirlann, I have to agree with Mel and AE--there must be something wrong with this woman if she doesn't like you!  You are an absolute sweetheart, and we all love you to death!!

Jane, the joey story made me all warm and fuzzy inside!  I love baby animals--they are all just so precious.  I can't wait to see the pictures!

I miss our dear Sue!  I hope she's just going straight to bed every day after work and getting tons of rest.  Love you Sue!!!!!!!

Love and hugs,

Karen

stepeliza

Hi, I probably have no business being on this chat because it's not me but my mother who is going through the cancer. I am just trying to soak everything in and learn as much as I can from all of you amazing women. You are all SUCH a HUGE inspiration to me- and I am begging my mom to join the site. I know she will love you all.



Also, Shirlann...we have spoken a bit and I would also like to say that your daughter in law is insane! Haha- you are incredible and you are just all over the place on this site with your timeless words of wisdom. I am terrified, but you all make me feel so much better and so not alone. I can't wait for Mama to meet you all.



Many thanks for your courage and love- my thoughts are CONSTANTLY with you all! Tears of happiness and hope are flowing.



TONS of love,

Stephanie

geebung

Here's Joey: