Rug torn out from under me at 3rd taxol appt yesterday

Robyn66

So I go to my doc appointment before infusion #3 and since I am supposed to be finally DONE after #4 on March 12 I wanted to know what the next step would be as far as check ups etc would be.

Me- So after the last treatment what comes next  

Doc-We decide if you need Radiation

Me- WHAT!  I have been told I didn't need radiation!  I am supposed to start reconstruction in April!  Nobody said I would need radiation I am supposed to be DONE with treatment March 12.  I wanted to know what kind of check ups would be happening and when.

Doc- Well, you don't fall into the categories that normally require radiation but since you are so young I will need to check with the Radiation Oncologist to see what he thinks.  But don't worry I am 75% sure  you won't need it.

Wasn't there only a 20% chance I was going to have cancer in the first place?  So needless to say I lost it.  I was in full blown tears when I got up to infusion and the nurse (who I had never met before asked me what was wrong but I didn't want to talk about it.  My husband was there with me so if I wanted to talk about it I had him.  NEXT THING I KNOW she brings this Clinical Social worker into my area to talk to me and I just shouted GET OUT AND LEAVE ME ALONE!  I have never been so rude in my life but I was at my limit at that point.  I think I had to yell it like three times before they got through their thick skulls

If there was ANY CHANCE that I should have needed radiation this should have been explained to me when the treatment plan was laid out MONTHS AGO or even Half way through.  The tissue expander was put in during surgery I think because they didn't expect my needing radiation.  The issue of needed radiation came up once in an appointment when her nurse practitioner was there and the Doc said no, it didn't look like I would need radiation and I thought they were going to check in to it at that time and when it was never mentioned again I figured it was dropped so I guess that makes it my fault.

My husband went back to the office to pick up a prescription for me and cought the onc in the hall way and told her how upset I was and that I would be living in utter hell AGAIN  until I knew whether this would be happening.

She said she would call as soon as she knew which would be before the two weeks.  I am praying it will be today but I am not betting my life on it so its back to the nerve pills becaus my life is out of my hands again. 

If they say I have to have radiation I have no idea what I am going to do.  It will not  be possible to go to Boston every day (I am two hours away) so I will have to go somewhere in NH and i am sure that will be difficult to set  up.  And it totaly screws up my plastic surgery schedule.  I was so looking forward to the constructive part of this disaster.

So later, I not only find out that nurse took it upon herself to get this social worker involved, but she ALSO called my onc to tell her how upset I was!  She should have at least discussed that with my husband before she did that.  Hubby is like, they want to help you and I don't like to be intruded on.

THen after all of this my husband (meaning well) said "he was going though all this too and he was right there with me" and then he started getting annoyed when I wasn't appreciating it or getting over it like he expected.  And he started on the ever present "you will be happy when it doesn't come back bla bla bla....."  BS and I about screamed at him. 

I AM FULLY AWAY OF WHY I NEED TO GO THROUGH THIS.  AND ITS TOO DAMN BAD IF YOU ARE GETTING ANNOYED BECAUSE THIS ISNT ABOUT YOU. YOU ARENT GOING THROUGH THIS WITH ME UNLESS YOU ARE GETTING THIS SHIT PUMPED INTO YOUR VEINS AND FEELING THE SICKNESS, EXHAUSTION AND PAIN THAT GOES WITH IT.  MY FEELINGS MATTER RIGHT NOW NOT YOURS  THIS IS ABOUT WHAT I AM GOING THROUGH NOT YOU!  YOU FIND SOMEONE TO TALK TO ABOUT YOUR FEELINGS BECAUSE RIGHT NOW MINE ARE THE ONES THAT COUNT.  I HAVE GOTTEN THE WORST NEWS TODAY IN A LONG TIME.  SO DEAL WITH IT, THIS IS ABOUT ME!

I feel really bad because my husband has been my rock and a total angel but lately the pep talks have gotten a old and turned in to pressure.  And if I can't look at this as a totaly positive expperience I am some how doing something wrong.

So I am living on eggshells until I get the call sound familliar ladies.  I am going to ask if there is anything else that I haven't been told as well.   

I have been wearing these stupid rubber bracelets to count down how much longer I have until treatment was done.  We have all been planning big celebrations about the end of treatment.  I know we can always plan the end of chemo but I wanted to celebrate the end.  Now I have one bracelet left and have no joy from it  I just have that same old familiar constant headache and sick stomache that comes from waiting for the other shoe to drop.  All I have to look forward to is the Taxol Pain that is going to hit tomorrow.  I think I am going to go home from work and just go to bed and take percoset all weekend.

Love to all

Seriously, depressed, defeated and sick of it all

Robyn 

NancyD

I can totally understand thinking you were almost done and then getting this news—and how upset it made you feel. We put our lives on hold while we go through this treatment and so look forward to being "free" to go on with our lives again without being tethered to treatments.

Let it sink in for a while. You may be able to get your head around it and do it, if needed, if you look at it as being the most aggressive way to be sure it doesn't come back.

When I was diagnosed, I told the drs I wanted to hit it with everything they had. I didn't want any regrets that I had been too reticent about treatment. Still, when I thought I was finished with my radiation treatments (last day...big celebration) I found out a few days later that boosts had been planned, but I was never told and they weren't on my center-provided schedule. I felt like running away and not going back. I felt very let-down.

It was only five extra days of treatment, but it shook up my plan to be "done" by a certain date. It meant I had to schedule another week working around the appts. My boss didn't quite understand, and I had to deal with it there. It impacted my life on several levels.

In the end, I'm am glad I did it. Looking back, the damage at work was meliorated by the success of a project I took up right after my rads finished. I have given my bc a run for the money and hit it with everything they had to give.

Sassa

I had the same thing happen to me.  I had my 4 AC and went in for my doctor's appointment.  I wanted to know what happened next and my doctor looks down and says, "Let me see.  Did we decided that you needed radiation?"

I nearly fell off the chair as radiation had never been mentioned to me.  It turns out  that I was coming close to finishing my AC, my onc took all my current test results and all my other information and discussed if was radiation was needed with the radiation oncologist. 

The answer was no in my case.

I suspect that the radiation discussion with the radiology onc as chemo is being finished may be a standard procedure in early stage disease.

dlb823

Robyn ~  I totally know where you're coming from, and occasional meltdowns, especially at this kind of news, are inevitable.  I had RT recommended to me early in the process, but then when I learned it wasn't the standard of care with a mast, I went through I long re-evalauation process, to figure out why some of my docs said yes, and some said no.  What I learned in the process is that the cutting edge institutions seems to be rethinking the benefits of rads with a mast, and leaning towards doing rads if there are any factors that indicate it could benefit you -- such as a positive node, less than substantial margins, etc.  I know it's extremely frustrating to get this recommendation -- or at least a recommendation to consider it -- so late in the game, but I think it's partly the current changing tide of thought on radiation with a mast.   Unfortunately, almost every bit of research is for those who have had lumps, so doesn't apply to us.  There is, however, one Swedish study and maybe one other (England? not sure) that point to a measurable benefit, and this is where the new thinking is coming from.  So, as disappointing as it may be to you (and was to me), personally, I'm very grateful that my doctors were on top of this newer, more aggressive approach.  And, I also have to tell you that my RT -- probably partly because I'd had mast -- wasn't nearly as hard as some women in our January rads group who'd had lumps experienced.  In fact, compared to chemo, it was a piece of cake ~  Deanna

roseg

Talk with your PS about this new development.

Some like to put the permanent implants in before radiation.

apple

Robyn.. that was the best rant yet.   

boy - they trickled my cancer treatment news to me in teaspoonfuls.  it irritated me to no end that they didn't lay it all out the first day.  Best of luck.  I hope you're not mad i called your post a rant.  You have every reason to be angry and know exactly how your feel.  sigh.

Diana63

I know how you feel, I knew I had to get radiation from the start but I didn't know about the 4 extra Taxol that I was going to take. I was down for the standard treatment of 4 AC and 8 dd Taxol, to my surprise after what I thought was my last Taxol I went to my oncologist and he said only 4 more to go. I said no I am done with Taxol, he looked puzzled and said no I have you down for 12 Taxol treatments. I started to cry, I said I cant do anymore chemo, he said yes you can. I said thats real easy for you to say, you're not me are you?

I went home got mad ranted around the house then had a long cry, looking back I'm glad that I did it but at the time it felt like the walls were falling down around me. Take a few days to get passed it and then you will feel better. I had my expander in during radiation and didn't have any problems with it yet but I still haven't done my recon yet. Good luck I hope it all works out for you.

lisettemac

I think we all have these moments.  It's easy to see why -- you summon up all the physical and emotional strength you think you need to get through this thing only to find out there's more.  I had a complete meltdown at my radiation simulation because the radiation onc wouldn't explain anything to me.  Left and went straight to the medical onc's office where I told him I wasn't doing radiation.  I had a good cry.  He reminded me of why it was a good idea and I eventually went back and finished the appt.  It's okay to be angry and upset.  Allow yourself to wallow in it for a while.  You'll feel better.

SpunkyGirl

Robyn,

No one around you understands what you are going through, but it sounds like (up until recently) your DH is trying really hard.  When you're feeling better, sit him down and tell him what you need and what you don't need (i.e. a pep talk, ever).  Your story is not so dissimilar to mine in the respect that we thought I had DCIS that would require a mastectomy, only to discover positive lymph nodes and IDC at surgery.  You can bet I was more than a little rocked, but eventually I came around and did what I had to do.  I did do radiation with an expander in, and waited six months for the exchange surgery.  Radiation was not terrible, and I've had no problems since the exchange late in 2007.  If radiation improves your odds significantly, do it. 

You can do this.

Hugs,

Bobbie

barbe1958

Robyn that was the best expressed anger I have ever heard. I hope your husband finally took your words to heart. If not, have him read what you posted. You were clear in your thinking and not hysterical at all (in case that's why they thought you needed the counselor).

The fact that you expressed yourself so well tells me that you're going to do great! Remind me not to pi$$ you off.... 

pffida

I, too, was blindsided by similar comments from the oncologist.  I had a mastectomy and always assumed that radiation would not be required.  However, when I did see the radiation oncologist, he stated that he wished EVERY oncologist would refer their patients for at least a consultation.  Generally, the oncologist is usually right, but there are some circumstances, especially for those whose circumstances aren't so cut and dried, that he would recommend radiation.  Just that morning, he had met with a breast cancer survivor with a recurrance that originally didn't have radiation.  She was never sent to the radiation oncologist originally and if she had been, he would have recommended radiation.

I think the thing we share in common is that the onocologists don't always do a good job of preparing us.  It was the surprise that bothered me.

Makratz

Thinking of you.  I know you don't want to do the rads, but if they could save/extend your life, you should think about it.  I live about 45 mins from Boston and hated the thought of traveling there everyday.  I hate city traffic.  You mentioned NH.  Can you do rads at Dartmouth?  I was also referred to Lowel for rads.  There is also a facillity in Milford Ma and Foxboro Ma. 

I also think you should have your DH read your post.  You did very well!  It is just so frustrating to have to deal with this.  You think you know your plan, and then they mention change....you weren't expecting it, your furious!!  Also, try and think about what your DH is dealing with too.  Does he have a support system too?  You are probably the most important thing in his life, is he scared of losing you?  Maybe he doesn' know how to deal with it. He needs an outlet too.  Just a thought. 

Will say a prayer for you.  Hang in there.

KPolasek

I have a story too but it is way too long to tell it all.  I will summerize it ..... from end of Aug 2007 -- tests .... finally diagnosed 10/22 .... this same surgeon said that the ultrasound did not look like cancer .... sheepishly he had to tell me that it was .... BUT it was early, under 2 cm and all I would need was radiation.  I thought ... I can live with that.  He said the same thing to my husband and I on the day of the surgery (lumpectomy)  He referred me to breast cancer center 1 1/2 hr away and could not get an appt before 30 days (he failed to tell me that I could seen a local onc as my insurance contracts with local oncs)   anyway back to trip  ..... first doc I saw as an onc .... first thing out of his mouth was .... this is an aggressive cancer, over 2 cms, would need chemo and rads ... and most likely I would not survive the chemo because my health was not good. 

Here I am 15 months later and want to sue both these dang doctors ... dumb idiots for saying things that they do NOT know for sure until pathology tests are in ... we are in such a vunerable state at the time, know that we want this thing out ..... that last jerk took my hope away ....  but I found a local onc who foo fooed dumb onc and said there would be no problem.  I did have some things happen but I survived.  I AM MAD  .... STILL .... this anger has just re-surfaced recently .... I did not know how angry I was .... still ...  I feel like making an appt, going in to see him and say you dumb bum I made it without your stupid help.

Sorry about the ranting ... but it makes me so mad when i hear these stories of incompetent doctors .... that doctor caused me unnecessary pain, fear, loss of hope ..... with his reckless jerk words and attitude.  Oh ... and ... my husband and I talked to the social worker about what we had experienced ... he could not believe it (we have it on tape) ... he went to see the onc and the onc said "good, I am glad that they caught on to that."  To think that this guy is TEACHING medical students sickens me.  You NEVER EVER take a person's hope from them ... even if they are terminal!!!!!!

again ... sorry about the ranting.

K

Robyn66

I M feeling so awful today I just can't stop crying.  I was so married to 3/12 to being the ending date of treatment that this possible change has completely destroyed me.

  I built my life around that date and then it was taken away from me like it was no big deal.  "I am just going to run it by him and see what he thingks now don't worry!"

 Now I wonder what else is being kept from me.  Do I have a higher chance of reoccurance? DId the chemo not work as well as it was supposed to?  They took everything in my mastectomy incliding the one affected node that had a tiny bit of tumor in it (which is what my breast surgeon said)

I was told the chemo going to wipe out any chance of any left over cells hiding somwwhere.  If I need  radiation then  in my mind, the chemo didn't work so why did I do it in the first place??  What else aren't they telling me?  WHat is the next bomb that I am going to have to have dropped on me that is going to devistate me as soon as I feel like I can see the end of this horribel nightmare in sight

Nobody understands, they just say hey its just Radiation. 

Yea, its just changing hospitals again and then daily appointments and missing MORE WORK and feeling MORE side effects and then who knows what I am in for after that is done.  I

 will have to be heading back to Boston for reconstruction and before I know it, probably in time to be in the middle of reconstruction it will be time for the mamograms again.  This has finally crossed the line into being too much for me to handle and I have noone but you guys.  My DH has had enough of me thought I can't blame him!  And I cant stand any more people telling me how ungrateful I am for having it so easy!!  So I am sitting here crying and trying to take enough attivan to sleep the day away and not kill myself  because I dont want to leave my bed or try and play brave any more right now.  All this based on IF! or Maybe!   DH wants me to call the doctor, I don't see any point in that.  All she is going to do is say its an if I don't fall into the categories and she will call me as soon as she knows.  That will do nothing for me.  So back to bed after I look around a but.  I am sorry to be such a downer but I feel just about as low as I did my first time here.

dlb823

Robyn ~  Unfortunately, what has happened to you is not uncommon.  Many of us have thought we didn't need one tx or another, only to find out we did -- and often we were totally blindsided by the news.  It takes time for the new reality to sink in.   But trying to fight it is totally futile.  Get a second or even a third opinion if you need it for peace of mind.  Then reset your end date, and move ahead.  Believe me, I know how hard it is to do that because I had to do it three times.  Didn't need a mastectomy, then did.  Didn't need chemo, then needed chemo.  Rads not "standard of care," but strongly recommended, so I reset my 2nd stage Diep flap surgery date and did rads.  My treatment dragged out for a full year -- and I still have that Stage 2 surgery ahead.  But mentally fighting the situation is totally counterproductive and will get you nowhere.  Have you talked to the social worker you mentioned in your OP?  Personally, I have found them to be unexpected angels in helping me through the twists & turns of my bc journey.  

Back when I first started my treatment, a dear friend who is also a bc-survivor, shared something with me that she'd gotten from her yoga instructor.  I've shared it with many others and want to pass it along to you today... 

      Courage doesn't always roar.  Sometimes courage is the small voice at the end of the day saying, "I will try again tomorrow."  Maryanne Hershey

Feel free to PM me if you ever need someone to talk to off the board.    Deanna

Robyn66

Thanks Deana-I think I am going to go hide under muy covers and cry for a while,  My best friend wants me to come to her house and I just can't right now,  Maybe I;ll feel better if I get some sleep.

R

Makratz

Robyn,

Maybe your best friend could come to your house while you rest.  It's always nice to have someone around.  I hope you feel better soon.  We are all praying for you.

snowyday

Robyn get the reconstruction done first as roseg mentioned I was told after I had rads that they couldn't do implants on radiated breasts, believe me I was not happy.  I ended up getting rapid rads 16 treatments instead of 33 and boosts and I believe it made a big difference in healing much quicker.  You were right to be upset and I loved the way you worded your feelings.  My sister comes with me and always tells me to take a grumpy pill before I see my onc, he's an idiot, I think.  When you see your rad onc make sure to be very clear about implants I had a lumpectomy but it ended up being right down to my ribs so I have a huge on the top of my breast, if I had known about implants and rads I would have had it fixed before rads.  Good luck. 

Mamie2

my bs told me to have rads and then a year later - reconstruction. I was not told that they can't do implants after radiation; but that I had to wait. They are also concerned about you starting treatment 4 to 6 weeks after surgery and no more than 9.

sweetlady2

It must feel really bad to hear that you might need more treatment than you expected.

 If you do need radiaton, ask about the "Canadian Protocol." I am a physician so I did a lot of reading and found out about a higher dose, 3 week radiation protocol. It was no longer experimental but had not yet been reported out in journals. My radiation oncologist agreed to do it. When I was about half way done with the radiation, they reported it out and it got a lot of press. It was developed in Canada because a lot of people live far away from centers where they do radiation.

BonnieK

Robyn,

Please don't spend too much time alone if you are able to be in the company of family and friends.  Your DH is probably just unsure what to do for you at this point, but I have a feeling that he just wants you to get well, even if that means extending your treatment by a few weeks. 

My situation is somewhat similar to yours, but I've had much more time to adjust.  When I was diagnosed last September, the surgeon told me I would need a mastectomy and chemo but no radiation for a stage 2, 3 cm IDC.  She sent me to a plastic surgeon and we planned for immediate reconstruction with a tissue expander at the time of my mast.  Surgery was 10/21 and the path report revealed a 5+ cm tumor plus 3 tiny ones plus 1 positive node, so everything was suddenly different.  Then I got a terrible infection and skin necrosis that required a second surgery in early November, putting me further behind in my treatment process.  When I met with the medical onc, he told me that radiation was being recommended after chemo - I was shocked, upset, scared and confused and not a happy camper.  Chemo began in mid-December (put off by slow healing and a sinus infection) and ended in mid-February.  Now I have a month off for my blood counts to return to normal before having exchange surgery prior to 33 radiation treatments.  Radiation may damage my implant, but I try not to worry about it as I move through this process with the support of family and friends.  My DH has been a rock, and even though he hasn't always done or said the right thing, I try to remember that he just wants me to get well and stay well. 

Sometimes the doctors are thrown curves in this process and they don't do the best job of relaying the information to their patients.  My doctors have been pretty good about their approach, but still, this kind of news is tough for anyone to absorb.

I wish I could help you to get through this difficult time, Robyn.  Take care and keep posting.

~Bonnie

dlb823

Robyn ~  We haven't heard from you in a few days.  How are you doing?  In case you haven't found it, here's a link to an article about the Canadian study mentioned above:

http://www.nytimes.com/2008/09/23/health/research/23canc.html

It's obviously not for every situation, but it can't hurt to ask if you might be a candidate for it, if you're interested.

I hope you're feeling better today  ~  Deanna 

Robyn66

I'm still here- still pretty depressed at being in limbo.  I have been in a TON of pain from this treatment.  The percocet hasn't done much to help.  One of my friends said that my stress level probably has a lot to do with it.

Saturday, I realized I was running low on attivan so I called my onc to call in a prescription.  This is something I would not normally do.  I would never call my onc unless I was bleeding out my eyes or something but I was in such a percocet fog I called her.  I am pretty sure that she said I wasn't going to need the radiation after all and she apologized for upsetting me so much.  I told her I am not someone who deals with surprises well and this really destroyed my world.

So I think I am in the clear but since I am not going to call her and say "hey I was in a half coma when I called you before so, do I get out of radiation or what?"

I will wait until next week for last chemo and hope I heard right.  If not, and I have to get the radiation I will find a way to deal with it like I have this whole stupid thing.  I am just sick of everything right now.

Deanna, THANK YOU! I will read about that study and see if its something I can do if I end up having to do radiation. 

Love to all

Robyn 

Snowbird

Robyn, reading your story broke my heart and rang a familiar bell...  For different reasons than yours, tho, I seem to have become a different person with absolutely NO coping skills left to deal with ANY disruption or distraction from my "plan". My DH too has been wonderful, and he too has had to have the "but they were just trying to be nice" talk with me, but to no avail. I feel the same way you did, that is isn't about any of "them" right now...  it's about ME and getting through what I need to do and I'm just not very good at it sometimes...  so, "everyone", just DEAL with it until I can regain my "balance" (if ever!)...  I do so hope you're feeling better now, but please don't let guilt over a well-deserved meltdown interefere with your progress...  CyberHug...

Robyn66

I think that is one of the things I hate the most.  I have lost part of who I am in this mess.  I am not normally someone who flips out when there is a small deviation in plans.  But if the slightest thing is off on a hospital day I am a mess.  I get so angry and cry.  My husband really is wonderful and an amazing support and I am sure I must really wear on him at times.  But for some reason he keeps coming home anyway!

There are still times I am just so ANGRY!  Its is surreal when I get hooked up to the chemo machine and I have days when I just hate all of the "cancer people" I see at the hospital.  I am normally a friendly outgoing person but I don't talk to anyone when I am there.  There are some people who are so comfortable with themselves, they take off their wigs and socialize and I can't do it.  Sometimes I am fine but other times I want to throw things at the sweet volunteers that will do anything in the world for you, and I would die before I would take off my wig.  I barely take it off when I am home. 

I don't know, I hope I am not changed for life.  I don't want ot be angry and bitter with this hair trigger temper.  I just want to wake up some morning with hair and my reconstructed boob and not have cancer be the first thing I think of in the morning and the last thing I think of at night.

Love to all

Robyn

dlb823

Oh, Robyn, we so know how you feel!  We've all been there.  And, although it seems like a long road ahead, it doesn't last forever.  I think one of the worst things about bc is how long each treatment phase drags on, and how we look and feel so bad for so long. It just gets to you after awhile.  But one day soon you'll be done with chemo, and your hair will grow back, and if you need rads, you'll get through those too.  It just takes time, but while you're in the midst of it, it's hard to believe that things will return to anything close to normal -- but they will.   I remember one day looking at a stack of 4 movies a friend had given me to cheer me up -- her all time favorite funny ones.  I watched maybe 30 minutes of each one, hoping it would get funny, which they never did.  So, I'd try the next one, thinking surely one of them would make me laugh.  But I just thought they were all so stupid.  And then there was the day I had the most horrific outburst at my son, who was only trying to talk about normal things that just didn't seem important in my new bc-reality.  It was totally unlike me, and it came out of nowhere, and he didn't speak to me for several days afterwards, he was so hurt.  I'm sharing these with you because I want you to know that you are not alone, and that when I tell you it does get better, you will believe it.  It does get better.  I promise.  Just be patient with yourself, and believe that what you are going through is temporary, because it is.   Deanna     

bluewillow

Robyn,

I'm so sorry you've been through all this.  When I was first diagnosed, I wish I'd had half your courage-- the first pathology report after my core biopsy said "DCIS", so onc said no chemo needed, just lumpectomy and radiation.  I was so relieved.  Then, after my first lumpectomy, the pathology report all of a sudden read "IDC invasive", then I was told I would need chemo after all.  I was so stunned that I couldn't respond, and it eats at me to this day.  I never got an explanation as to why the sudden turnabout in pathology reports.  I have tried to put it out of my mind, but like I said, I wish I'd had your courage and ranted and raved at them, just like I should have.  I too had some real angry moments and I know I embarrassed my dear husband to death too.  It does get better-- we really mean that!!!   I might add that rads are a piece of cake compared to the chemo drugs.  I had my radiation treatments at a different cancer center closer to my home, and everything went very smoothly.  Like Deanna said, it is temporary-- life gets better and will be wonderful again.  Hang in there and best wishes to you!!

barbe1958

Blue Willow, if I'm not mistaken (someone will be sure to correct me!), DCIS can HIDE other cancers which is why it has to be taken very seriously. That's why size, stage, grade and type are usually confirmed at the pathology of the surgery.

Jack55ok

Robyn,

I am so sorry to hear of your experience. It is devastating to learn at the last minute that your treatment has been changed or not completed. I have written on this board a couple of times with no response so I am hoping someone will lend me some advice too.

My treatment plan consisted of 4 chemo and 36 radiation. Well when i went in for my last chemo and was so very excited to be done, I was told they made an error and I would need a 5th treatment. I was devastated becasue I was so sick from them. They said that the first 2 treatments were only given to me at 50% of it should have been, resulting in a 5th treatment. Their error, my horror!  I called ACS and they could not even tell me anything because they had never heard of that either. I finished up all the treatment last year but am still confused and worried and hoping this will not result in anything bad like reoccurance! Thanks. 

Snappygoddess

One thing I never understood, even after talking to my onco about it. Why the doctor has never ordered ANY tests after I was diagnosed? No pet scans, no mri's...nothing. I mean how does he know there is no other cancers in my body?? When they did the lumpectomy, they got it all, margins were clean, no lymphnode involvement...so I guess he figured the chemo would kill all of the other cancer cells in my body??

That is the only thing that  has eaten at me since I was diagnosed this past October. I read these forums and everyone tells about how they had to have tests done first thing when diagnosed and I just wonder HOW does my onco KNOW that there is no other cancer present??

One thing I do have to add..I do trust my onco team..they have all been great.. upfront and straight with me as far as I know..and I have educated myself on my cancer as much as I can. But it still niggles at me that I asked my doctor about the tests and he sort of played it off. I am by no means eager to get in a scan machine(I do have a small amt of claustrophobia) but I want to make sure I do not have cancer anywhere else too!! 

Any input, advice, critique is all welcome,,,cause you all are the bestest!! HUGS

~Belinda~  Snappy 

otter

Belinda, one reason why med onco's often do not do scans on women with early stage BC is because they don't think it helps in staging the disease.  I think the reason is that there are too many false-positive results and the findings aren't helpful.  When you have a small tumor and no positive nodes, the odds are very low that the cancer has spread anywhere else.  Even if it has, those metastatic sites are likely to be too small to be visible on the scans.  If you're having symptoms that are suggestive of mets, that's different--then, most oncos will do scans. 

For example, the current (2009) guidelines from the National Comprehensive Cancer Network (www.nccn.org) say, "The use of PET or PET/CT scanning is not indicated in the staging of clinical stage I, II, or operable III breast cancer."

bluewillow, that must have been agonizing to have your path results change that much.  Barbe is right, though--it's fairly common for there to be DCIS mixed in with invasive BC.  I had a 1.8 cm tumor that was nearly all IDC, but there was some "associated" DCIS in there, too.  When the radiologist did my US-guided core biopsy, he took 5 tissue samples.  Even with that much tissue submitted, the pathologist could only find cancer cells in 10% of the tissue that was submitted--that's equivalent to half of one of the 5 core samples.  So, if the radiologist had only submitted 3 or 4 samples, or if he had missed that one little spot, or if his needle had sampled the DCIS area instead of that marble-sized IDC, ... who knows?

As for rugs being pulled out--Robyn, that's awful for you.  I know how you feel, wanting to get beyond all this and get on with your life.  But hardly anything is certain in all of this.  I didn't think I would need chemo.  I had an ER+ HER2- tumor that was less than 2 cm and was fairly well-behaved.  I waited 6 weeks for my Oncotype results (that's another story), and by then I had pretty much convinced myself the Oncotype score would be really low.  But, it wasn't--it was 26.  So, my onco called me on a Thursday and said I needed to start chemo "ASAP" (because of the long wait).  Everything changed; and I had my first infusion the following Thursday.  It wouldn't have been a whole week later except I was in the process of switching oncos when he called.

otter