window for chemotherapy

[scaredofAC]

I was dx with invasive ductal carcinoma on 8/9.  I had a lumpectomy on 8/29.  The tumor was 1.4 cm and the surgeon got a clean margin (ER/PR negative, Her2Neu strongly positive, Grade 3).  He took 2 sentinal nodes - they were negative.  My oncologist wants me to do 4 rounds of chemo - AC, followed by 6 1/2 weeks of whole breast radiation.  I was supposed to start chemo 9/25, but I chickened out.  I lost my mother 1 month before dx and am having marriage problems.  I am petrified of chemo.  My doctor says it is important to have the chemo within a certain time frame in order for it to be effective.  Can someone please explain the reason behind this and how long is too long?  Thanks!  JLR

[darcytwin]

irishgal...thank you so much. that is very kind.  a funny story..i was just put into the recovery room after my mastectomy and the phone starts ringing...the nurse says "what? yes..of course.." and hands me the phone...i groggily answer "hellllooo??" It was my sister..i have NO idea how she mangaged to get thru to the recovery room..i asked if she knew where i was and she said NOO..so i told her....and she said....''wow that wonder twin power stuff REALLY works!" hehe...then my husband walked in and said..."There is NO way you are already on the phone.." and made me hang up with her.....lol...

balda...i agree withihughes69... you ARE the strong one..bless you....fingers crossed that i will continue with stregnth and courage..

Ihughes69...Congratulations...what a wonderful ending to a horrible time!

[lhughes69]

Pic of Lauren Jackson Hughes on my profile, she's my chemo baby.  She's named after my father who passed away 2 months before she arrived (ok, plucked!).  Thank you for the wonderful thoughts.  I know it was God that gave me Lauren to help me get through the cancer.  He knew that I would focus on her and not on my cancer...and that's true.  I kept myself healthy for the baby and in turn was healthy to face the chemo.

To BaldandBeautiful:
While I was driving, you got me to thinking about chemo and our stories.  And I would like to say that it is YOU who sets that bar high for all of us.  You made it through a horrible time!  You should relish the thought that YOU survived all those days and nights of he**.  You remind me of my theme song during my cancer...  "If you're going through he** keep on moving, don't slow down, if you're scared don't show it and you might get out before the devil even knows you're there".  You made it!!!  I'm impressed and I won't ever have THAT story to tell.  My chemo was blessedly easy.  If you can survive what you went through, then we ALL can!!  You are the one.  We should applaud you and your story.  And to those of us who have our own stories, whether easy or just sorta difficult....it just goes to show that if WE ALL CAN get through it...EVERYONE else can at least go into the unknown knowing somewhere out there, someone else has done this, too.  And that should give everyone else courage to face that unknown.

I would hope that everyone find encouragement in all our stories and finds something good to take away from them knowing we are still here to tell our stories.

Bless everyone who writes those stories...and may everyone have good health for MANY decades to come.

[Irishgal2]

It was a lovely thought putting your twin first so you can both celebrate you're 40th birthday.  A week is neither here nor there and your doctor and oncologist is correct.  I hope you both have a wonderful birthday and that you will both share many more in the future.  What is it with 40?? I was diagnoised 3 weeks before my 40th birthday.  I'm sure you will have wonderful support from your twin through your whole journey.

The very best of luck to you with the chemo, I do hope that you have the good experience I had and lhughes69.  You attitutde and frame of mind is brillant and it would most definitely get you through the tough times.

lhughes69 you were very brave going through all that you did especially with a baby inside, it must have added a huge amount of extra stress to an already stressful situation.  I would love to know if you had a baby boy or girl and if everything went all right for you when the time came to bring your baby into the world.  What is the baby called?  I wish you, your two children and hubby all the best of luck in the future.

[lhughes69]

I guess we are all scared of the unknown and biopsies and chemo (lovely poison it is...I called A/C my red and white wines).  And it does and will affect everyone differently.  I was blessed to have had a good experience with my chemo.  I was blessed to have a baby at home to cry over when I needed to, a baby growing inside me that gave me courage to face each round of chemo.  And a husband that held my hand every time I had a needle stick (I didn't have a port).

Oh and my SURGEON was freaking out that I wasn't starting my chemo until 5 weeks after my mastectomy.  The oncologist was waiting for my OB to give him the all clear.  We had to wait until I was in my second trimester to start A/C.  I was comforting HIM that it would be ok.  And it was.

And I LOVED oftens story of watching cnn about George Harrison.  How funny!  (or as my daughter says "that tickles me")  I had my last chemo on 6/6/6!!!!!!  Unluck or not?  In times of trial, I guess I try to find the funny in life.  It helps me.  

I'm so sorry for anyone who gets sick with their chemo.  It seems unfair to those who didn't have an easy time when others did have an easy time.  I hope you are stronger for it.  Perhaps that was the gift in this all?

PS..to BaldandBeautiful....were you??  Bald and Beautiful?  I was a little buddha.  Short, round, and perfectly bald.

[darcytwin]

I start my chemo on nov 16th (next friday)..my identical twin is coming out this weekend to share our 40th bday and i didnt want to ruin it with chemo..as i should have started this week instead..i am kind of freaked out starting a week later than i should but my surgeon and oncologist said i was fine....

i am sooooo scared, but whatever the outcome will be, i will deal with it because i have to.  That has been my mantra and so  far it has worked.  AND, if it is only horrible in my mind..what i have made it out to be..all the better...if not, so be it...

[Irishgal2]

Thank you very much for posting your positive comment and experience.  I will you all the best in your breast cancer journey and hope you do as well in all subsequent treatments.  Good luck.

[idobelieveinfairies]

Thank you for posting your experience and giving others hope. Please continue posting here. As you said we are all entitled to share our experiences. I have told some ladies that I had a masectomy on Friday and came home Saturday doing things I normally do (laundry and such). I felt really good. I had no pain meds when I woke up cause they cut all the nerves and deaden them. I have been scoulded for sharing this to other ladies but it was my experience. Again thank you for posting. I wish you well.

[Irishgal2]

I found your comments really hurtful.  So many people were giving me the horror stories of chemo before I started it and I was totally dreading it.  The reason I said what I did was that I wanted to give the lady hope that she could get through it.  I could see for myself in the oncology ward that it was different for everyone, the chemo regmines, people's circumstances and people themselves were different.  Chemo is not great for everyone but I just wanted to give the lady some encouragement.  I am sorry that your Chemo was horrendous for you, I guess I was just luck and I thank God that I was. My intention was not to upset any fellow cancer sufferor or put anyone down.  I had been told before I started the chemo by "helpful people" that I will be sick every day, would not be able to function, I would have every side effect going and that my children would be distraught to see their Mammy like that.  Well, I'm sorry but these people certainly did not help me.  They made having breast cancer even more frightening.  I had no choice but to go for chemo, but I wish I had gone into the treatment more positively.  Thankfully I came out of the treatment on a positive note and I am as entitled to put my positive experiences across as much as you are yours.

I do really hope that Scaredof AC made the right decision for herself and I wish her all the luck in the world as I do you.

[Vicki59]

From what I've read there doesn't appear to be any adverse impact to delaying chemo at least up to 85 days after surgery.  The more important consideration is maintaining the schedule once you do start.   But statistics are frequently contradictory and there are so many variables you can't take them at face value and apply them to your own specific case. I'm not a medical professional, but I'd say, give yourself a little time to do whatever you need to get into a positive frame of mind.   The positive attitude is probably a lot more important right now.  By the way, I'll probably be starting chemo right about the time you do so I'll root for you if you root for me!

[sumanb]

I spent a great deal of time deciding about my chemo. My tumor was 3.5 cm so it should have been a no brainer but my oncotype came out to be very low suggesting I do not need chemo, Four oncos I went to were equally divided.  I decided to go with the treatment. Where I went,  they did not do oncotype if  one is er/pr negative. Oncotype is not well accepted in many hospitals, they just go by tumor sz, node biopsy etc. But this picture is changing fast. Just recently oncopy dx testing bacame part of ASCO guidelines ( see news for Genomic health). SO it is gaining more respect. Your doctor(S) have to suggest what is best for you. I wish you luck in your decsion making.

[boninclyde]

Usually when under 1cm the oncos do not recommend chemo. But your er/pr is negative that may be the reason. But then again your nodes were negative. Ask for the onco type test that will help determine your chance for reoccurance. Mine was 0.09mm so I did not need chemo. Just tamoxifen. What after treatment meds is your doctor considering. Also have your biopsies sent to another lab to see if they agree with the diagnosis (size, er/pr and her2). Even with all this no one can tell you the benefits of chemo. Follow your heart. Chemo can have it on long term side effects. You can go to breastcancer.org, then community support and join the discussion board there and talk with others ladies there that have had to make this decision and you will find info to help you make your decision. I wish you well.

[BaldandBeautiful]

Chemo effects everyone differently.  I too was told that there are wonderful drugs that would help with nausea.  But they didn't.  I was gravely ill throughtout my four A/C treaments (in 2 months).  I was unable to even think about food much less eat it.  My 'rebound' time lasted for only one or two days, just in time for my next treatment.  When I say rebound time, I mean I was able to hold down soft food and liquids.   I was literally unable to get out of bed 80% of the time.   So when you make comments like:  

"If I could do it with 2 young children, commuting 50 miles each way to work and working many days during the treatment, then so too can you.

You're really doing a disservice to the many chemo patients who are not handling chemo as well as you did.  Personally, your comments makes me (and I'm sure others)  feel that somehow I didn't handle this horrific and toxic treatment as well as I SHOULD have.  While I'm extremely happy that you were able to go through this experience as well as you did for you and your family---it's NOT the case for all cancer patients.  Please don't set the bar so high for others that we feel like we've failed ourselves and our family by not being able to carry on our normal activities.  We all do the best we can with what strength we have.

[Irishgal2]

Chemo is probably the worse part of breast cancer, well it was for me and also loosing my hair.  I had 4 sessions of AC regime.  It was not nice to say the least and I would hate to do it again, but you know what, neither was it as bad as I thought it would be.  The anti nausea tablets are a great help.  It was only for 3 months and now I am in the middle of my radiotherapy.  I have two little boys so I have everything to live for so opting out was not an option for me.  My husband and myself actually got closer during the chemo treatment and I had great support.  If you have marriage problems avoiding chemo is not going to help.  You may or may not be able to save your marriage but you can save yourself.  You need to put yourself and your fight against cancer first, nothing else matters.  I had to make myself the number 1 priority in my life which I have never done before and I'm sorry but you have to be selfish now and concentrate on yourself.  If your husband does not support you during your chemo well then maybe he is just not worth it.

Since you are not ER and PR positive, hormone therapy is no good for you. You mentioned that you are Her2Neu strongly positive, Grade 3.  I am grade 3 also which means the cancer was fast growing and active and this was one of the reasons I had to undergo chemo.  I too was lymph node negative.  You need to look at your life and see what you want to do.  Give yourself a chance and take the doctors advise.  Believe me no doctor would suggest chemo if it was not necessary.  You won't be alone doing the chemo, your mam will be rooting for you from above, be brave and move forward with your treatment.  If I could do it with 2 young children, commuting 50 miles each way to work and working many days during the treatment, then so too can you.

[often]

No one could have been more terrified of the chemo than me...six years ago next month I had the first of 4 treatments of AC...I was a basket case through the first treatment....(imagine sitting in the onc's office, getting the treatment and the only thing on the tv was CNN talking about George Harrison's death from cancer...)

I don't know about the time frame, although I am sure that it is in case there are stray cells they can be killed before they get a grip.  

Was AC pleasant?  No....   Was it do-able?   Yes....  I worked throughout, although I have to say my employers were extremely good about my not showing up if I felt ill.  Am I glad I did it?  Overall, yes.  I was unable to take Tamoxifen, Arimidex and would not even try Femora.  I don't remember all the path info except that I was er positive, stage 2 by size (2.1cm).  Anything over 2 cm called for chemo at that time with that onc.  

If you cannot decide on the chemo, I suggest you discuss with your onc your chances of survival with and without it.  And ask him for the "absolute" percentages.  Then you have to make the decision and live with it....no looking back, either way.

You might want to ask for a referral to a therapist or group that specializes in bc to talk out your fears.  

Godspeed

[lizziecee]

Can't really answer your questions - they are ones for your doctor. I can only tell you my own experience. I was dx with an invasive ductal tumour, 2 cm, assocated DCIS,with lymph node spread, 4/18 positive. I was told by the Oncologist I had to stop the chemo (methotrexate) for my Crohn's as he said I would die from septicaemia if I took both chemo regimes. He couldn't however advise on how he would deal with a Crohn's flare, which was inevitable, as he had never treated a patient with the two concurrent diseases. Gastro said he had to be guided the Oncologist.

I initially refused the chemo (6 x FEC) whilst I contacted various Oncologists and Gastros in England, where I live and the US (Mayo, Cleveland Clinic, MD Anderson etc.). Although all the doctors replied, none had treated a patient like me. I really felt in a wilderness.  I decided that cancer was more of a survival threat than Crohn's and went ahead with the chemo a month after my two surgeries.I asked for another Oncologist, as the first one was very arrogant and patronising.  I was very fortunate in getting a young 30ish female GP who worked one morning a week in the Oncology Suite and she prescribed a small daily dose of dexamethasone (the steroid they give you with the chemo infusion to alleviate nausea), and a nutritional fruit drink which came from the hospital pharmacy. Despite eating no solid food for the 4 months of chemo, and losing some 28 lbs, I was still faecally incontinent, but when I look back, some 4 and a half years later, I feel I made the right decision for me.

It is a very personal decision to fill your body with poison, and suffer the smetimes serious side effects, and there are a number of women on the bc forums that chose not to have chemo. However, my decision was really based on the fact that the cancer had already spread to my lymph nodes, and as the doctors explained, microscopic cancer cells may have gotten through the lymph nodes to other organs, such as the liver, bones or lungs. You are fortunate in that your lymph nodes are clear. It could be that your tumour was large (at my hospital, a centre of breast care excellence, patients with tumours over 1 cm are advised to have chemo).  I feel the specialist bc doctors know far more than I do, and they would not advocate chemo unless they felt it was warranted.

Hopefully, other survivors will come along with their experience/and or knowledge.

Take care,
Liz.