New, Unsure, and Scared to make the Wrong Choice in Treatment

Inatizzy

Hi Everyone!  I've spent the day lurking around here and reading numerous posts.  I've never joined a discussion board before but from what I've seen, you are all so supporting of one another, despite differences in opinions, choices, and cancer expereinces.  I'm hoping you can give some advice as I'm terrified of making the wrong choice! I have IDC, Stage 1A, grade 2, no positive lymph nodes, and am currently recovering from a left breast mastectomy and reconstruction.  My cancer is ER+/PR+ and HER2-. (Who new in a single month one can learn very quickly a whole new lexicon!)  I'm 40 years old, a mom of 4 (my youngest is 6 and my oldest is 18).  I know I'll have to recieve hormone therapy but was hoping to avoid chemotherapy.  My oncotype score came back a 24. Right smack in the middle of the intermediate mark.  To do chemo, or not to do chemo...I'm worried the ill side effects will be worse than the roll of the statistical dice.  (I'm just so nervous.  I've never needed perscription drugs, had never had a surgery or hospitalization, have never been ill beyond a cold my whole 40 years---until this cancer!)  What would you do??

Beepositive

Hello Inatizzy

Hello Inatizzy, sorry you have to be here on this sight but as you stated lots of hugs and support here!! Im new to this all to just had left breast mastectomy in March 2017 still have breast expander and waiting to have implant in a few months (had to wait until area heals fRom radiation ) currently taking hormone therapy.

this is the THING.. NO one can tell you what to do and shouldnt because ..everyone body , system and life is sooo different so what worked for one may not work for the other.

as doctors, oncologist , breast specialist they must tell you everything and give all the options..that is their job..you have to make your own decisions from that.  its your life and your body.

ASK LOTS OF QUESTIONS OF YOUR DOCTORS THE WHAT IF AND WHY ETC.  ONLY GOD KNOWS ..FOR REAL... GOOD LUCK AND PRAYERS WITH EVERYTHING

IM SURE YOU WILL MAKE THE RIGHT DECISION FOR YOUR OWN BODY.   HUGS TO YOU

CONTINUE TO "BEEPOSITIVE"

Inatizzy

Beepositive said:

Hello Inatizzy

Hello Inatizzy, sorry you have to be here on this sight but as you stated lots of hugs and support here!! Im new to this all to just had left breast mastectomy in March 2017 still have breast expander and waiting to have implant in a few months (had to wait until area heals fRom radiation ) currently taking hormone therapy.

this is the THING.. NO one can tell you what to do and shouldnt because ..everyone body , system and life is sooo different so what worked for one may not work for the other.

as doctors, oncologist , breast specialist they must tell you everything and give all the options..that is their job..you have to make your own decisions from that.  its your life and your body.

ASK LOTS OF QUESTIONS OF YOUR DOCTORS THE WHAT IF AND WHY ETC.  ONLY GOD KNOWS ..FOR REAL... GOOD LUCK AND PRAYERS WITH EVERYTHING

IM SURE YOU WILL MAKE THE RIGHT DECISION FOR YOUR OWN BODY.   HUGS TO YOU

CONTINUE TO "BEEPOSITIVE"

Thank you Bee

You're so right, I know you are, about needing to make the decision that is right for me and the truth in nobody else being able to make it for me.  My gut says no to chemo, but I can't tell if that's the voice of fear or sage instinct.  I meet with my Onc tomorrow, and will create a list of questions tonight.  Thank you!!

Apaugh

it is a hard decision...

March 2016 for me.  Bilateral Mastecomies.  Very tough choice to make.  I was HER2and positive.   I chose not to have reconstruction.  I was so over it all.  went into high dose chemo for 2 months.  with those nuelsta shots that kick you in the rear.  not going to lie, it is tough.  but that chance of it coming back was toughter so I agreed.   I got so sick I could not do the Taxol part of it.  to hard on my extremites with neuropothy.  So went on to Hercepting for a long time every 3 weeks.  now on the 5 yr pill but so much joint pain.  going to see doc next week to see if there is a different one.  if not, I am not giong to e them anymore.   none of this is a walk in the park, skippity do dah time.  You have to be brave and strong and you must be kind to yourself.   ASK lots of questions and dont be afraid to call those docs when you need to.  Keep a journal about everything and it will help you firgure out the patterns your treatments will take so you can be prepared for the next one. 

I hope you will have freinds or family with you, it is needed to get through this.  Remember you cant be superworman right now.  You must rest and build up your strength.  It is not a short trip.  It is long and winding rollar coaster of physical and emotional journeys.  

We are here for you and we will hold you in our prayers.

HUGS<

Annie

Beepositive

Inatizzy you are strong

you are welcome Inatizzy... you will be fine!  rough road ...but safe landing..  hang in their and keep talking  (its really helps)  things could be a lot worse.

Beepositive

disneyfan2008

hugs

NO adnice-i never had to make the deceion of chemo-i did only radiation.

 

I am sure you will find much advices from other here...

 

HUGS

 

Denise

Inatizzy

Apaugh said:

it is a hard decision...

March 2016 for me.  Bilateral Mastecomies.  Very tough choice to make.  I was HER2and positive.   I chose not to have reconstruction.  I was so over it all.  went into high dose chemo for 2 months.  with those nuelsta shots that kick you in the rear.  not going to lie, it is tough.  but that chance of it coming back was toughter so I agreed.   I got so sick I could not do the Taxol part of it.  to hard on my extremites with neuropothy.  So went on to Hercepting for a long time every 3 weeks.  now on the 5 yr pill but so much joint pain.  going to see doc next week to see if there is a different one.  if not, I am not giong to e them anymore.   none of this is a walk in the park, skippity do dah time.  You have to be brave and strong and you must be kind to yourself.   ASK lots of questions and dont be afraid to call those docs when you need to.  Keep a journal about everything and it will help you firgure out the patterns your treatments will take so you can be prepared for the next one. 

I hope you will have freinds or family with you, it is needed to get through this.  Remember you cant be superworman right now.  You must rest and build up your strength.  It is not a short trip.  It is long and winding rollar coaster of physical and emotional journeys.  

We are here for you and we will hold you in our prayers.

HUGS<

Annie

Thanks, Annie

I'm sorry you have had such a difficult go of it.  Those awful side effects are what makes the decision to undergo chemo so difficult.  You just never know if they're worth it in the long run---but when it comes down to it, every day is a blessing and no day is guaranteed.  I met with my onc this morning and have decided to go for it.  I'm nervous, but think chemo is my best bet to make sure I'm still around to raise my babies.  I'm not expecting it to be easy, but I'm lucky to have good supports in place and my work has been incredible with me.  Thank you for sharing your experience with me and I appreciate your advice!

 

 

Josie21

Hi Inatizzy

Hi. My story seems very similar to yours. I was diagnosed about 9 years ago with ILC, stage one, no lymph node involvement. My oncotype score was a 13. I had a bilateral mastectomy and at that point I thought I was done. I was being treated at Sloan-Kettering and they suggested chemo because my tumor size was just below Stage2.  I was scared to death and totally not ready to hear that treatment plan. I decided to get a second opinion from my prior oncologist who had been treating me for prior DCIS. Together we decided no chemo, just Tamoxifen and 2 years later a hysterectomy. I have to say it was the most difficult decision I ever had to make in my life. I tortured myself over it. The most important thing I can tell you is once you make your decision, trust it. Go on with your life. I am now 9 years out from my decision and it worked for me. Get all the facts from your doctors and then do what is best for you. I know how hard this must be for you. You will be in my thoughts and prayers. 

HapB

BC Calculator

inatizzy, I also had a difficult time making a decision about chemo, but I am a lot older and had prior cancer treatments. 

Have you taken a look at any of the BC calculators? Here is one that is frequently used. 

http://www.predict.nhs.uk/

 

With 4 children to fight for, I know you will make the right decision. 

Double Whammy

Not that much different

I was stage 1B, Grade 2 IDC in 2010.  My oncotype test came back 31 - at the very low end of the high risk category.  I was actually relieved that I didn't need to make a choice because of the oncotype test score.  I was sure that it was going to come back right in the middle.  In hindsight now, I often wonder if I really HAD to have it given I have permanent hairloss from Taxotere.  On the other end of the spectrum, I'm glad I did everything I could so if it did recur, I wound not say "if I'd only" . . .   I was 63 which is much older than you and I tolerated the chemo ok.  I just never want to do it again!  I hope by now you have discussed this with your oncologist and have come to a decision.  No one can make it for you.   All you can do is listen to the recommendations of your oncologist - they do not have a magic wand under any circumstances.  Given you're undecided, you might want to get a second opinion.   I had lumpectomy, chemo, and radiation.   I also had endometrial cancer (at the same time) and I was simply scared to death and given where I was at that time, I really have no regrets.  I have had lots of hard times because of the permanent baldness, but I have accepted it.  At my age, I have better looking wigs than most of my friends' hair!  Good luck to you.

Suzanne

Inatizzy

Thank you for your responses!

It is just so helpful to hear about other’s experiences. I met with my onc on Friday morning armed with questions and feeling mostly anti-chemotherapy (with my luck, I’m just so scared I will be left with a nasty long lasting SE or the chemo will actually help cancer spread throughout my boodstream). I was convinced I could drastically change my diet and increase my exercise... well, I am now starting chemo on the 16th. I get my port placed on the 13th. I feel like I got my questions answered and my onc was very forthcoming. She didn’t try to downplay the SEs of chemo nor did she guarantee me I will never have a recurrence but she did explain that now my cancer is as “curable” as it can be and if I do nothing and have a recurrence than it will have matasticized with a more difficult plan of treatment. She also admitted I could choose to do nothing and never have a recurrenc. I think because I trust her, I asked my onc if I was her daughte, would she recommend the same thing. She said “absolutely.” So here I am, nervous but feeling empowered to actually have a plan. I feel like right now I need to be doing everything I can to be around for my littles. Thank you for sharing a bit of yourselves with me!

HapB

Inatizzy said:

Thank you for your responses!

It is just so helpful to hear about other’s experiences. I met with my onc on Friday morning armed with questions and feeling mostly anti-chemotherapy (with my luck, I’m just so scared I will be left with a nasty long lasting SE or the chemo will actually help cancer spread throughout my boodstream). I was convinced I could drastically change my diet and increase my exercise... well, I am now starting chemo on the 16th. I get my port placed on the 13th. I feel like I got my questions answered and my onc was very forthcoming. She didn’t try to downplay the SEs of chemo nor did she guarantee me I will never have a recurrence but she did explain that now my cancer is as “curable” as it can be and if I do nothing and have a recurrence than it will have matasticized with a more difficult plan of treatment. She also admitted I could choose to do nothing and never have a recurrenc. I think because I trust her, I asked my onc if I was her daughte, would she recommend the same thing. She said “absolutely.” So here I am, nervous but feeling empowered to actually have a plan. I feel like right now I need to be doing everything I can to be around for my littles. Thank you for sharing a bit of yourselves with me!

Inatizzy

I am glad that you made your decision and feel confident. Chemo is worth a try and you are young and hopefully your side effects will be manageable. Are you Her2 +  ? Keep the faith and believe that you will be cured! 

Inatizzy

HapB said:

Inatizzy

I am glad that you made your decision and feel confident. Chemo is worth a try and you are young and hopefully your side effects will be manageable. Are you Her2 +  ? Keep the faith and believe that you will be cured! 

HapB

Hi Hap!

I am Her2-, Er and Pr +

I absolutely believe I will kick this! I have to!

HapB

Inatizzy said:

HapB

Hi Hap!

I am Her2-, Er and Pr +

I absolutely believe I will kick this! I have to!

Inatizzy

Thank God that you are not Her2+,so your treatment will be shorter and your chances much better!    Keep the faith!! You can do this! 

Dianne Wilburn

Been There

My Oncotype score was in the middle, too, back in 2010. Chemo is hell and I am so sorry you have to go through it. Hang in there girlfriend. I survived it and you can too! Hugs, prayers!