ER+/PR+/HER-2- Means what?

Janina, take a deep breath and wait until all of the results are in from your pathology.  When I had my lumpectomy in April I ended up having all my nodes removed because they were matted, which is a sign the cancer is in the nodes.  Luckily they were all benign.  Although my margins were clear after the lumpectomy, I opted for bilateral mastectomies and reconstruction.  I was 42 when I was diagnosed last year and I just didn't want to have to worry about mammograms and MRI's of my breasts every 6 months and also I wouldn't need radiation.  I just finished the final phase of my reconstruction and I am very pleased with the results!  It is a difficult decision and one that is not made easily.  Take some time and let everything sink in, it's very overwhelming!  Feel free to PM me if you like.  Good luck to you and gentle ((((hugs))))

Janina & Ezscriiibe, Thank you for the websites. I didn't mean to scare you Janina. I am so sorry if I did, but like we have all been talkin about, once you have made you choice and done it, there is NO going back and I can't say I will ever be sure what is or was the best choice.

 My diagnosis was similar. I had a Lumpectomy and two nodes removed, the nodes were negative, but they still say Radiation. Why? if the margins and nodes were clear why do I still need Radiation. And all this hi-five b.s. If my nodes were clear and the margins clear they said that means it hadn't traveled anywhere else, "I caught it in time" WTF??? Then tell me this Dr.'s, why are you now doing more testing to see if I need Chemo?? that doesn't make sense. Chemo is systemic treats my whole body, kills any cancer cells anywhere else in my body, and my other breast.

 I asked if I had just the Radiation to my left breast(the infected one) only can you guarantee I will not get Cancer in that breast again? She looked crazy at me, raised her eyebrows, and said, "no of course not". Then what about my other breast? I/we will always be worrying I will have it again.

They seem to me to be double talking. I am not getting a straight answer. They always give a long drawn out medical summary of the treatment that 'they' suggest to me, or anyone else. Its like they're following a script, this is the norm, the expected plan, that their BC patients should follow, according to them/the team of Dr.'s.

 They didn't go to years & years of school and spend gobs of $$ to learn, Radiation, Med. Oncology or whatever it is, to send you away or back to your Surgeon to do a mastectomy and NO Radiation.

 My Plastic surgeon in Fla. (the one that did my implants 3years ago) said, go for a second opinion, OUTSIDE your area. CuzDr's have a problem going against each other after your original diagnosis. Of course they are going to promote Rad. & or Chem to you, 'its their job'  It would be like bringing your car to be fixed to one garage, they tell you the max that should be done. They wouldnt tell you another way it can be fixed that involve you going to a different garage, and not using them the original one at all.

Yes, its not a definite that I or you are going to get all the nasty side effects of Radiation, or any of them. But its better than 50% that I am. I understand that with Radiation, it lower my chances of recurrence by 60%+. But with mastectomy/double mastectomy W Reconstruction, I virtually wipe out ANY chance of BC again!! and save myself 8 weeks of, pain in the boob radiation, chances of side effects, possible ending with removal and reconstruction anyway, and S~T~R~E~S~S!!! it wont be off your mind for 8 LONG weeks when you can be healed by then, and be started on making brand new boobies.

 I am afraid if it does the damage my PS told me it can do, it will be harder to repair. He can, and has repaired wounded boobies but he doesn't like to after Radiation, because the skin is too fragile and there is a greater chance of infection and complications. They told me the difference in skin before and after Radiation is like night and day.

 His nurse told me a current patient told her, "if I woulda known Radiation was guna do this, and was going to make it this hard to rebuild, I never would have had the Radiation in the first place. I would have chose mastectomy with reconstruction and saved myself weeks of inconvenience, pain, and Grey hairs".

 My Plastic surgeon also said, it is best to wait until you are healed before the Reconstruction. There is less chance of infection and complications.

I'm sorry if I'm repeating myself, I guess I am trying to decide this choice for myself and I am, lets say, typing out loud!! lol

I read this page too. http/www.breastcancer.org/treatment/radiation/new_research/20081201.jsp 

Please I wish it was so easy to decide, a very clear answer. But it is not. I am not sure which decision to make that I can truly be at ease with and never question, coulda, shoulda, woulda................................................ I need a crystal ball!! anyone seen my crystal ball?? Just for one question then i'll give it back......................

LOL. I agree with you on the pepperonis!! I think thats just because they are new and prob. a bad tattoo job! I will come with my own tattooist, I wouldn't let anyone else tattoo me but my girl Chyna. hehe.

 There is another procedure, skin sparing or nipple sparing. Im not sure what you have to do to be a candidate for them but Im guna ask next week. Also what about the partial radiation? The seeds they implant? you dont have to do that for long and there are good results with it, and your cosmetic outcome is good. The other one is for two times a day for a week. That sounds better.

I love my boobies,,,,, and I DONT want to loose them for anything...... But I am scared to go threw ALL that radiation, stress, possible side effects, and then have to have it fixed in the end anyway. And all that to still worry the rest of my life that it can come back. In that one or even the other...................

My cancer did not show up in the mammo, even when we tried to get the lump in there. It just was see thru. They had to do the ultrasound to see it. That was scarry thinking I had it for so long and was prob. passed over on last years Mammo.

 I wish I could relax alittle throughout this. Im guna blow a gasket. Every night me and my Boyfriend have been fighting. I cant think of anything else it scares me to death, and he sais can we take a break you told me all this before, your just upsetting your self more, and he has a different view he seems to be blocking it out to cope. I wish I could.......

I need this to be OVER for good. and quicker. Why did I let it consume me and my life.

A few of the women in my family & my nieces in their mid 30's say, I would do the same thing, take em off, and the ovaries too. Get rid of any chance it can come back.

This is the hardest thing I have ever gone through and I think most women will go through. How do you do it and be OK with your final decision?

I did not like that one paragraph that recommended, you do not have a good option for implants if you have had radiation. What then. What will you do if you need it fixed and they cant put in another implant, because your skin is too fragile.

& LOL on the belly fat and skin, they can also use from your hip or butt. and NO I dont want scars all over me to fix my boobies, but they are options.

Im guna see my Dr next week, and call this place in Louisiana, who knows I might totally change my mind.  AGAIN!!  I think there is too much info out there sometimes it just confuses me.

I think ill take a week off and stay out of the books and off the Internet. I will only check on this site to keep up on how all you are doing.

Thank you for your honest comments on my ranting, and even replying to me, you are a truly great cyber friend.. ;-}

Hi, Janine, what a great visit! I hope mine is as informative! I did want to mention one thing about the BRCA1/2 gene test. Everyone has those two genes (BReastCAncer). I was told that what the test does is unravel your chromosones where that gene is and reads it to look for a mutation in the gene. The BRCA gene, again, I was told, is something everyone has and, if it's working properly, is supposed to protect us from breast cancer. 

But the gene can be damaged and have a mutation that makes it not work anymore. So what they are testing for is the mutation. If we test positive for it, that means that our BRCA genes have been damaged and are no longer protecting our breasts from cancer.

I was also told that the gene only passes through from the mother. She contributes one half of the paired chromosone set, and the husband contributes the other half. So if your mother had the mutated gene, then you had a 50/50 chance of getting it, so you would need to be tested. If you test negative for the mutation, then there is no way that your daughter can get it from you, since the mutation isn't there to pass on! Wooohooo!

BUT if your mother had the gene mutation, and you tested negative, any sisters you have should still test for it because they also have a 50/50 chance for the mutation. 

My mother and her mother both had breast cancer. But neither was tested for the BRCA gene mutation. So I'm the first to do so. My sister is already scheduling her test, but my daughter will be waiting to hear the results of mine, which should be back in a week or so, I hope!

Janiana~  The same thing happened to me at the time of surgery they told me the two nodes they removed were negative for cancer but when the final path came back there was micro pieces of cancer in two. I then had to have an axillary node dissection, they went in and removed 14 , they were all clear.  I did have to have chemo and like you was so scared...I cried and cried and cried some more and then I thought lets take care of this.  I did have a bilateral mx. and I had that because this all started out with breast reduction surgery..(the mamo was clear before I had the reduction sugery) when pathology came back on the tissue from that it was cancer (ILC) so because it was basically a huge lumpectomy but they couldn't say there were clear margins becuase they didn't know there was cancer.  So that is why I made the decision to have a bilateral mx. and I was glad I did because that path report said there was some things going on in the good breast as well....I think the word was "it is a time bomb" This was all a huge shock, here I was doing something cosmetic and ended up with the news of cancer...when I got the phone call I told them they probably called the wrong patient I mean after all I had a mamogram that was clear how could it be me.  Long story short I did the bilat with tissue expanders and two weeks ago I had the exchange sugery with silicone implants and will continue with the nipple reconstruction in about 4 weeks. As I said I did have to do chemo which once I got going was very doable....the SE weren't that bad, but the worst thing for me was losing my hair...horrible, but I made friends with my wig and I did get a good one most people didn't even know it was a wig. A good friend got me hooked up with that.  I went to a few stores and was horrified by the wigs they had me try on.....I felt a little big like homer simpsons wife.  Just keep the big picture in mind....you want to wipe this out of your body.  My dr. said to me it is like washing your floor with soap (cancer) you want to rinse the soap off everything with water (chemo) so you make sure you wipe it out.  This is a journey no one wants to go on....Keep your head in the game and do what is best from you and your family.  I was diagnosed April 15, 2009 so it takes about 1 year to take care of everything in my case anyway.  Feel free to ask me any question you may have.  Sorry if this seems like I am rambling.....I tend to do that sometimes...

Hey what do you teach....I teach too.....3rd grade

warmly,

Balsie~

Janina, Thanks for the info it was great. I had a lot of questions for my Radiologist when I saw her and she confirmed  a lot of what you said. She cleared up all of my uncertainty's about SE from it, during and after treatments. I am also getting set up to interview with another Dr for the genetic testing.

Just when I was almost to a deff. decision on my Radiology or mastectomy my Oncol. called all my tests came back.

Looks as though I have slipped into post menopause, when I was on the hormone patch and didnt know I went through it. Thats a great thing cuz my ovaries arn't making the hormones the way they were before. so that means i dont have to think about removing them.

My Vitamin D came back low so shes going to add a supplement to give me an extra 1,000iu, besides the dailys and extra calcium & D I now take.

Bad news is my Onco test came back with not so good numbers. She wants to see it <18. Mine is 23 (mid -low) She said it is in the gray area and thats not good taking a chance with it. She also saw Vascular invasion, a very quick growing form.

She said all together its not a good percentage that I should take with it to do a "wait and see".

She doesn't want me to wait much longer than a month or the meds wont be good if I have regeneration of any kind.

I have an apt with her on wed. to set up my Chemo schedule......................  :-(

It was again tooooooooo much info at once. But what I think I got from it is, itll be 2 drugs mixed together, I get one dose @ 3 weeks..............for a total of 12 doses!!! WTF

thats 36weeks, then a month off and Radiation 5 days a week for 8 weeks, then Tamoxifen for 5 years....................................................................

Well I guess I know what Im doin for the rest of the year!!

After all my worrying about Rad. & I havent even investigated the Chemo, who woulda thunk it?

Well gotta go let it all soak in for a bit and back on the web. for Chemo info.

I went to see my friend to visit, she owns a small boutique, Ive been keeping her up to date on my status. So After we talked for a bit she sent me home with a bag of beautiful scarves!! it didnt even upset me I thought it was very sweet and thoughtful. She even gave me a beautiful black and gold real fancy one- I forgot I have a wedding to go to in July..... it matches my dress perfectly!

As long as im not feeling ill, I think I can deal with this, and even have some fun.

My boyfriend already said "wow, do you realize how easy its guna be to get you out of the house for an apt. or dinner? You wont be doin your hair forever!" I told him, "but it does take some time to pick out the proper scarf to match your outfit!! "a*hole!!!!!!!!!!!

Im not giving up, I'll just keep pluggin along............................. ;-}

PS the Dr did say it was important we get our H1N1 shots.

Everybody hates the idea of no hair. It's a given. It's a cruel thing to face. I sit here and bust into tears every other hour or so, thinking about it.

But it's temporary. And you can buy one of my t-shirts: I gave up HAIR for Lent.

You, TOO, can be fashionble and make a statement during chemo!

Hehe! I am going to make some on CafePress!

I'll send you one when you start!

Hmm. Maybe I should get a copyright on the phrase before someone steals my idea!

Michele~  I love it....can we order them at that site?  I already know who I am ordering one for .....even myself! 

warmly,

Balsie

Ezscriibe...YOU are amazing.  What a wonderful idea.  I think you could market this to the cancer agencies for sure.  For example, at the cancer centre her in Victoria they have a shop where you can buy scarves and wigs...something like this T-shirt would sell for sure.  You could have other slogans as well (one of them I read on this web site):

"Stop Staring and Grow your Own"  "Yes they are fake.  My real ones tried to kill me"  "Rogain Experiment Gone Bad" "Go Bald or Go Home"  "Me: 1 Cancer: 0"  "Hair is for Sissies"  "I choose to look this way.  What is your excuse?" 

What about other ideas?  Pink sisters...let's come up with hundreds of great slogans!

Janina, I cant stop thinking about you and your apt. yesterday. Its funny you seem to know me very well for someone I never met, or spoke to. We live far apart, but we became sister's at almost the same time. I am older than you in years but not in life itself. I feel I have sooo much more to do, accomplish, see in my life. I have plans already for years, and years in my future.

We both went to see our Oncologists yesterday for the same thing, althogh my Dr. had already called with my Oncotype news. I went in to further discuss it with her and my boyfriend. It wound up a mess, a hysterical mess. I mean me, I was sobbing uncontrollably and yelling at them all. The Dr.'s didnt know what to say. My BF Steve even got rude Her and her entourage of Dr.'s students, nurses, & OH yea a Dr from some other state some other hospital who knows I dont remember. She was there to OBSERVE their techniques and teach them some of her's. They all come in B4 my Dr have me get undressed put on a gown, wait 15 min, they were running behind. One of the Dr.'s asked me whats new since last visit? Are you Effing kidding??? I have seen so many dr's how am I supposed to remember who I told what to? I said "a lot, and I'm not repeating it to you, then your nurse, then you go put of the room to brief my Onc. Dr because shes not in the room now, then yall come back in and my Onc. Dr asks the SAME questions and goes over the SAME material you just did" Then he had the nerve to ask me, "is there something wrong today? you seem a little more tense than our last visit" I just grabbed the box of Kleenex and preceded to Ball, very loudly. He then said, "ok then why dont we skip this and you can get on the table so we can examine you" I freaked out Steve got rude and very loud too. We both said "NO" "no more touchy feely, Its all guna get repeated when my Onc. Dr comes in and then SHE wants to examine my boobies AGAIN!!"  I told him "NO boob show today for you" then Steve said " Dude just go get the Dr., stop waisting our time here" The other Dr mumbled something about, this is a learning  and teaching hospital and they always do it this way. Steve said, "go teach somewhere else, and didnt you go to school to learn? Your not teaching on us, so go get the Doc!!" then the  3 of them left. (Steve has balls, very BIG balls. LOL) I think I mentioned to you b4 hes a, get and do it, get it over with now and move on, no wasting time, and dont care what people think about him, kinda guy.(LMAO) sometimes its a good thing, sometimes not!! But this time he was right on, and I was balling wiping my eyes with my hosp gown. When my Onc. Dr came in she apologized and said it was hospital policy they do things that way and there is a reason for it. What ever!! She started her little speech,, gave me the little graphs and started telling us about other people and how one way is better but worse for someone else, an studies have shown, and, and, and, then.........(as i was still sobbing trying to answer her and tell her MY fears and questions through my hysterics) Steve struck again...................................... "We dont give a rats @ss about all that data and charts and SE other people had. What is the d@mn result for Dee? she said well im leading up to that. Steve said "well fast forward to the end will ya, cant you see what this is doing to her?" She stuttered a little, I guess no one has ever questioned her bed side manner! We all calmed down and she gave me the results and told me her recommendation is to follow the advise of the experts that did these tests and the trials and came up with results and percentages. Thats what she would do. But she said, "most of all you have to follow your gut, and what you think you could be comfortable with doing. It's ALL in your hands, you have the power and the knowledge to make your own decision. It's your life and health and only you are responsible for making a choice, dont do it for someone else"

She is a very good Dr. I really like her a lot and I wouldn't be surprised if she turns my case over to another Dr. for the way we acted. But ya know what? ITS ME, ITS MY LIFE, I HAVE BREAST CANCER. THEY DO NOT!!!

Everyone is almost acting like were in a restaurant and I cant decide on the menu, I have several things to choose from everyone else has already ordered, and they all picked there favorite, Im holding them up, they have to wait for me. Hurry up make up your mind the sooner you do the sooner we can get our order and start and get done and leave.!!

I dont wana make the wrong choice. I dont wana look in the mirror every day and see a woman with Breast Cancer either. But they're ALL bad for you, so are we trading one for the other?

Please Janina, let me know how your apt. went. I only know how I felt with the news, and the whole time I was thinking of you. ;-} you can PM me if you want or maybe call on the phone? I hope im not being too forward but I will PM my # to you just in case.

I havent called anyone else or even told my family, or my daughters yet. I dont know what to say to people. Or myself~ I only know I can tell you all and be totally honest and you will understand. Thank you all for letting me vent, and thank you for being on this site to hold my hand.

Janina, I am very happy for you. Good luck to you honey on your treatments, you will be just fine with the treatment you chose.

 You say you are starting Mon? I will say a prayer for you and, and will be thinking of you all day. You'll do great!! Its what you want, so you will make it work for you.

 I truly believe that if a person wants something sooooo bad, they will find something to fit and make it work for them.

Every person is different, as every cancer is different. Dont listen to anyone that says you should or should not do a treatment for ANY reason.

I browsed some other sites and read a few hear and there. Some of the ladies(not sure lady is the correct word!! lol) Giving advice but sounded more like promoting their treatment, and getting upset, or pushy, that some women are choosing some other treatment. I thought we were here support and sharing information, and funny stories???  

We all know that in the end it is a personal choice. But we need to stay connected because this site helps us vent, learn, keep sain, and most of all BE UNDERSTOOD!! By women that are in the same shoes.

I knew you would find something for you, that fits you perfectly, and your personality ,and your life style.

As for me........................................................................................??? LOL

We are all individuals, with different tastes, from different parts of the country, and different walks of life with one thing in common.

On this site we do not judge each other for our decisions, our style of clothes, hairdo's(lol), or as people say, "what side of the tracks you live on!".

And we dont even know each other but,........ we know each other, and Love each other like sisters, daughters, and moms, all because of one word. Cancer!!

But because of that word, we met each other and are probably doings things we normally wouldn't have done. And for that, I am thankful. Now, just getting rid of the cancer is our main priority.

I have a lot of thoughts goin around in my head and am trying to sort them out. So forgive me if I am rambling on. Typing out loud if you may!!

I do have a bit more searching on my part yet. Yea I know, Ive only been doing this for 2 months already and am still not completely satisfied with a decision yet!! Crapola.....................

I talked to my Dr. about CMF. She went over everything with me. Yes she also said it would drop 4-5% off my rate. Hair loss,...... she also said everyone is diff. Some may some may not. But she said it still would create thinning (to me thats just a diff. word for loss!!) The same with Chemo, most people lose a lot or most of their hair. She said either way I can not get away from it totally. She said it is easier on your body NOW,.... but the long term SE were worse with the CMF. She referred to it as "old school" and used to be the main type of treatment suggested, but is still greatly used. And is very good option.

I compared all the info she told me and what I read about it with the CT that was offered to me as the most efficient type of treatment for my whole situation. It may or may not be good, bad, or best for me because there are likes and dislikes with each one.

I DO NOT want to loose my hair, I DO NOT want to puke up my guts, or crap myself. I DO NOT want to loose weight, I DO NOT want sores in my mouth...etc. you all know the SE's of them all. But anyone I pick is NOT going to be pleasant. I think when she compared CMF - CT it was the loss of 5% that stuck out!! That is why I am dong this or any treatment, to steal a little extra, get all I can the first time around. I want to do everything I can to try and make sure I dont have a second time, the first time!  I would gladly trade my hair for the extra 5% I would get from doing CT. it will grow back, it is one of the short term SEs. So is nausea, and the just plain not feeling good part. But even tho I think the CT is better for ME, I am still uneasy with my decision. Do we ever get comfortable with our choice??