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Declined chemotherapy...

AnnieTherese's picture
AnnieTherese
Posts: 67
Joined: Aug 2012

Hi, This is my first post.

When I was diagnosed with grade 3 breast cancer in 2010 I had a right mastectomy. I was very strongly advised to have chemotherapy.... HOWEVER ... the oncologists also said that even if I had chemo, the cancer would most likely come back in a couple of years anyway, so I declined it. I figured why go thought the hell of chemo when they reckon...very strongly...that the cancer will come back. I don't regret my decision, but I am wondering if there is anyone else out there who has refused chemo or any other treatment too.

I've felt very much on the outter because of my decision.

I'd like to hear your comments.

Cheers, Annie

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

First, welcome. But, I am truly sorry you have the need to be here. The people here have kept me sane through my journey. I hope you find it as welcoming, loving, and supportive as I have.

I am very curious about why your docs think the cancer will be back within the next two years. Chances are their thoughts are based on statistics...you are not a statistic! It's either going to come back or it's not. And the doc does NOT know, he does not have a crystal ball. Honestly, I would be asking for a second opinion...or even looking for another doc.

As for your decision, you have to do what is right for you. If in your heart, your gut, your mind this is best for you...then it's all good and try and be at peace with what you have chosen.

Hugs,

Linda

lynn1950's picture
lynn1950
Posts: 2566
Joined: Jun 2008

Hi Annie. Do you mean grade 3, or stage 3? I am stage 3, it's been 4 years, and as far as I know, my cancer is not back. I am so sorry to hear that your oncologists said that the cancer would probably be back! I see it is two years later for you. I am so sorry that you've had to live with this prognosis. Have you considered a second opinion? My best to you.

xoxoxox Lynn

AnnieTherese's picture
AnnieTherese
Posts: 67
Joined: Aug 2012

Thank you both for your replies.

Actually it was... 3 oncologists ... who told me that, not just one !! They said it was grade 3 and an aggressive cancer and that's why I should have chemo. They said radiation and hormone therapy were not suitable in my case, but they almost INSISTED that I have chemo and were terribly shocked when I said no. My mother had BC for many years before she died and I always said I wouldn't have chemo if I got cancer, not that I dreamed in a thousand years that I would get it.

I had the mastectomy and no cancer was found the the lymph nodes or any other part of my body, so presumably they got it all. When I told the first oncologist I wouldn't have chemo she got a lady professor in to "talk to me" she was very aggressive, stood in front of me with arms folded and basically said....well don't come back here in 2 yrs when the cancer has returned and expect us to cure it, because secondary cancer can't be cured it can only be treated.....I said, don't worry I won't be back !! She said to go home and think about my decision for a week and come back and let them know my final decision. The next week I went back...the first two oncologists weren't available, so I saw yet another one...the third...she was also almost insistant I have chemo. First I said .. ok, ok, I'll do it if you think it's that terribly important. On the way home I said to my husband, I just can't do this, so I phoned them and told them I wouldn't do it and that was that.....My GP was also very sure I needed chemo, but in the end they all said it was ultimately my decision...but basically meant....don't blame them when it comes back again.

Most women seem to do as they are told by the oncologists...but I just can't. I'll never have it, even if it does come back. I've heard of a few other women who have chosen not to have it, but very few. My mother had treatment for years. She was officially diagnosed at 62 and died 4 yrs ago aged 90. But she did have chemo and hormone treatment almost all that time.

Cheers, Annie

Frankie Shannon
Posts: 457
Joined: Oct 2011

Hi Annie i had bil mastectomy 2 years ago and did not have chemo or rad i am on Tamoxifen for 5 years 3 to go as mine was estrogen positive stage 1 i chose to have my mastectomy and 2 lymph nodes remove from each side no cancer my onc has never said any thing about it coming back as fare as she is concerned.You do whats right for you.
Hugs Frankie

Mittensandmedwick
Posts: 85
Joined: Jul 2012

Hi Annie I just read your post again and I am appalled at how they treated you. There are not God. My oncologist had to balls to tell me(I had to tell 3 people yesterday that would not live to see next year) I replied I am truly sorry fhose people, but that is not me. He then told me that he has people who declined chemo begging him for it to save their life, and it is too late for them. I once again told him sorry, but that is also not me. I found out chemo here in Santa Cruz Calif cost $50,000 and you know the Dr gets a cut of that so that is why they want everyone to get chemo. I am glad you went with what you believe, cause I did the same thing, and will do anything in my power to get rid of this cancer and live a productive healthy life

XX
Patricia

Mittensandmedwick
Posts: 85
Joined: Jul 2012

Hi Annie my name is Patricia, and I also declined chemo. I am stage 1 grade 2, er and or positive and her negative I had a lumpectomy and 3 lymphnodes removed 1 of them had a few cancer cells. I declined chemo because the risks out weighed the benefits by far. I will be starting 34 rads treatment on 8/14/12. I am totally fine with my decision I made after careful considerations of all the tests that have been done. I will keep you in my thoughts and prayers as we both go through this together. Hope to chat with you soon.

Patricia

AnnieTherese's picture
AnnieTherese
Posts: 67
Joined: Aug 2012

Thanks Patricia....I think if I was a younger woman with a family and mortgage and had to work, I may have agreed to chemo...but I'm 61, almost 60 at time of diagnosis. I discussed it with my family and husband, although it was ultimately my decision, but they all agreed with me, which made me feel better and gave me more confidence.

Radiation and hormonetherapy was considered unsuitable for me, so only chemo was suggested.

My husband said he'd rather have me for a year healthy than go through chemo and have me very sick maybe just to gain a couple of exta years. I'll never have chemo, even if it comes back....I have wonderful support from my ordinary doctor, my minister of religion and my family. I don't necessarily want to live to be 90...so dying doesn't frighten me, as long as it can be pain free, which my doctor has assurred me he will look after that side of things when/if the time comes.

So for now, I'm living a normal life as I did basically before my diagnosis. I've started the process of breast reconstruction, which will take a couple of months. Sometimes I think a lot about cancer, sometimes I hardly think about it at all.

Sometimes I hear of a woman being diagnosed with BC and think...oh how terrible, poor thing how sad...then it suddenly hits me...hey, I've had that !! :-)

Good luck with you treatments, please let me know how it goes.

Cheers, Annie

Mittensandmedwick
Posts: 85
Joined: Jul 2012

Hi Annie thanks for your reply. I am glad to know that someone feels the way I do about chemo. My husband at first said to get any treatment the drs recommended, but has changed his mind about chemo once I explained that it would not benefits me at all, and would make me very sick according to the Dr. I feel the same way you do as far as never having chemo. I would much rather live my life without bei get too sick to enjoy it. Hang in there and I will talk to you soon

Xxx
Patricia

Heatherbelle's picture
Heatherbelle
Posts: 1218
Joined: Jun 2010

While chemo is no walk in the park it is certainly not debilitating. It was like a 3 month detour on the highway of my life. I was told my cancer was aggressive also, and because of my age my doctor said it was protocol for me to have chemotherapy. I also can't have any anti cancer drugs or herceptin because im almost triple negative, er-, her2-, and pr only 1-4% +. THat 3 months, plus another 3 to start feeling back on my feet again, was well worth the assurance that any stray cancer cells were being killed. It's not like having chemo makes you an invalid. I have young kids - i took them trick or treating, did grocery shopping, walked, and i never vomited one single time from chemo. For me the unpleasantness of chemo wasnt nearly as strong as my desire to fight it with all ive got.
Best of luck to you
heather

corinnajune's picture
corinnajune
Posts: 2
Joined: Aug 2012

I agree- Chemo wasn't lollipops and roller coasters, but it really wasn't that bad. Mostly I was uninterested in food, slept alot, and was fuzzy-brained. It was annoying for a while, then I came back feeling like myself again.

Radiation was way worse than chemo and harder to bounce back from, but for some reason nobody ever tells you that!

Btw I am triple neg & metaplastic, rare and hard to treat... but so far so good :)

lynn1950's picture
lynn1950
Posts: 2566
Joined: Jun 2008

I think I see where you're coming from - having watched your mom battle cancer for so many years.

But treatment has changed in the past 28 years! including the drugs that help you bounce back from the chemo and the drugs that help keep the more noxious chemo effects at bay. Of course the decision is yours to make.

I'm sorry that you had such a bad experience with the professor person. I've had bad experiences with doctors myself. They don't necessarily know what is best for us, but many of them certainly think they do! Personally, I've had surgery, chemo, rads, and hormone therapy over the past 4 years. But I didn't just follow my oncologists' orders. I personally researched every little bit of advice. I questioned everything! No one is going to care about my body as much as I do. I'm sure that you feel the same way. I wish you peace with your decisions. xoxoxox Lynn

AnnieTherese's picture
AnnieTherese
Posts: 67
Joined: Aug 2012

Hi Lyn,

Yes I was told that the chemo would be designed especially for me...but to be honest, I didn't trust them....the whole process just terrified me, and I couldn't go ahead with it. I've read that 80% of women who have chemo get cancer back again anyway...so I thought, why bother.

There was a wonderful man here in Australia, a brain surgeon, his name was Professor Chris O'Brien. He was featured on tv documentaries and saved many lives. Eventually he got brain cancer and had all sorts of brain operations himself,and all sorts of treatments, but he died....I think the whole country was heartbroken. I know everyone is different, and we must all make our own choices. If I was younger...I'd most likely have tried chemo, but I have no responsibilities....except I have a wonderful husband, but he has agreed with all my decisions.

Sometimes I'm very aware and I worry what has happened to me, but most of the time I just live my life as if it never happened. It's always at the back of the mind, I'm relatively new to all this, only 18 months since my diagnosis, but I think I'm doing pretty well.

Thank you for caring....sounds like you've done pretty well too. :-)

Cheers, Annie xx

carkris's picture
carkris
Posts: 4505
Joined: Aug 2009

I did not decline chemo but would never judge any one who did. I often wonder what else it would do to me. One thing about a cancer diagnosis is you need to take control where ever you can. If you have peace that is enough. I think your cancer type must be aggressivr, so it would show up sooner than later if it did. hat is why the 2 year comment. hope it never ever does.

MAJW
Posts: 2515
Joined: May 2009

What type of breast cancer did you have? Chemo is nothing like it was years ago...it's very doable...no one wants it ....But I wanted to live...

Wishing you the best...

AnnieTherese's picture
AnnieTherese
Posts: 67
Joined: Aug 2012

Well, I'll quote from the path report. I was told I had grade 3 cancer.
The report says....talking about the right breast...

There is an area of irregular density and architectural alteration corresponding tothe palpable area in the right breast and this is associated with calcifications i that region. These are quite extensive but not frankly malignant, although I would have to classify the calicifications as indeterminate.
The ultrasound examination shows a significant abnormality at the 10o'clock position, 8cm from the nipplin the the right breast and measuring 18mm in max diameter. Immediately adjacent there is another slightly smaller lesion measuring 15mm and several other tiny adjacent nodules lie immediately medial to the main two lesions as described as above.
A possible tiny lesion is also present lateral to the palpable area. These are all probably within the same quadrant of the breast.

Then on another paper there is written.

Conclusion: Core biopsy right breast 10 - 11 o'clock: MALIGNANT: Invasive ductal carcinoma estimated as moderately to poorly differentiated.

That's about all I can see that would mean anything.....

MAJW
Posts: 2515
Joined: May 2009

The type you have is invasive ductal ...Thus your oncologist recommending chemo...Did they stage it? It goes from stage 0 to stage IV...

Gain, wishing you the best

AnnieTherese's picture
AnnieTherese
Posts: 67
Joined: Aug 2012

No not that I can remember, just said that it was grade 3...unless there's something on the report that I don't understand.....

roseann4
Posts: 994
Joined: Sep 2009

I was told that the staging was based on size of tumor and whether the cancer was found in the lymph nodes or elsewhere in the body. Sounds like your cancer was stage 1 or 2. The grade is another issue. I was stage 1 and diagnosed at 58. I opted not to have chemo because I was told that in my case it would only improve my prognosis of recurrence by 3 percent. My oncoTypeDX score was 18. These are very personal and can be difficult decisions to make. There are never any guarantees. 31/2 years later I'm living each day with gratitude.

Roseann

AnnieTherese's picture
AnnieTherese
Posts: 67
Joined: Aug 2012

Thanks Roseann, They took 10 lymph nodes from my armpit and none had cancer. So yeah, I guess maybe I was "stage" one or something, I don't remember anyone saying anything about that, but they may have. I don't understand what DX score is ??? There are so many things I don't understand that they talk about.

I've just started the process of breast reconstruction. I have an expander in place that will slowly be filled with saline and eventually will be a silicone implant, possibly by Christmas. The first time they tried to put saline in, it didn't work. I was pretty upset as I was told the procedure would be easy. So I decided to give it another go a week later...well, second time it worked and they put 100 mil in, I go again next Monday for hopefully 150 mil. They say I'll need at least 600 mil or may even try for 700. I expect the final implant to go in just before or just after Christmas.

Cheers, Annie :-)

CypressCynthia's picture
CypressCynthia
Posts: 3873
Joined: Oct 2009

Annie, I had Stage 3A breast cancer and did everything. The chemo was not wonderful, but I survived it and here I am 25 years later. I had a recurrence 3 years ago, but I am doing well. I am 59, but no where near ready to stop fighting.

I respect your decision, but make sure that you have really thought it through. Chemo side effects are usually manageable these days.

Also, make sure that you are not dealing with depression, which is common in cancer survivors and can impede our treatment.

Good luck. You are in my prayers.

Mittensandmedwick
Posts: 85
Joined: Jul 2012

Hi Roseanna my name is Patricia and I am also stage 1. My oncotype test came back as a 22 and the Dr told me I was in a gray area for chemo. I was also told that chemo would only reduce my risk by 3%, and to me the risks by far out weighed the benefits at least in my case. I just started 34 treatments of rads today, so 1 done 33 more to go. As you said there are no guarantees so I went with what I felt was best for me, not the drs. I am glad that you are 3 1/2 years down the road. You are an inspiration to me

Patricia

Noel's picture
Noel
Posts: 3101
Joined: Apr 2009

I just want to welcome you first of all and secondly wish you good luck. My oncologist never recommended chemo as I had clean margins with my lumpectomy and my node was clean.

I respect anyone's decision in their treatment. We all have to choose what is right for us and what we want.

Good luck and sending hugs,

Noel

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1650
Joined: Jan 2011

Hi Annie -- We have the same type!I too had those words in my report (and lymphvascular invasion). I am not doubting your Drs. because I am not sure about what elements they took into account. I get my treatments at Sloan in NY, and they never told me my cancer will come back in two years. The truth is, no one knows! You are an individual and so am I. and although we have the same cancers (grade 3, ductal carcinoma, poorly differentiated), we may not get the same results. I was dx at 32 so I needed to have chemo. I too had clean nodes, but this doesn't mean anything! I trusted my Doctors (Mount Sinai also gave me the same options for treatments, but I went with the best, Sloan). I did lumpectomy, radiation, egg harvesting (which exposed me to estrogen for 3 full weeks), chemo and now on tamoxifen for 5 years. My tumor was 99% estrogen and 89% progesterone so I have no choice but to take tamoxifen. And to be honest with you, I want to use all the tools I can against this cancer. But this was my personal decision. You need to make your won personal decision.

Please know that no one knows what will happen. Doctors may know how to treat you but they sure don't know the future.

Chemo was not a walk in the park but it was doable. Everyone responds to it differently, but I can tell you that it isn't close to what it used to be. I didn't throw up once!

Did your Dr. mention if it was triple negative? Was there any level of estrogen? If there was, tamoxifen may be appropriate for you. It's a good drug!

Please let us know how you're doing. We care!

XO

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

Clean nodes does mean something Love Baby Jesus. I had clean nodes, meaning my bc had not spread to my nodes, which meant that I did not need chemo. I've often wondered why doctors advise chemo if you have clean margins and nodes. Anyone know? Is it the grade and stage that makes them do this?

I don't know if I would take chemo with a small percentage, as, I don't know that it would do anything.

Do what you want and we will all support you.

Hugs, Diane

Julia K
Posts: 8
Joined: Aug 2012

Hi Annie, Three years ago, at age 44 I was also diagnosed with Invasive ductal carcinoma with cancer in 19 lymph nodes and my liver. I am also Her 2neu pos. I had the bil mastectomy, even had reconstructive surg and have to go in for Herceptin infusions every three weeks. I totally respect your decision. If I have a reoccurance I am not sure I would go through all of that again. Live your life well, enjoy what you have and do and do what you need to do for you.

SIROD's picture
SIROD
Posts: 2116
Joined: Jun 2010

Dear Annie,

There is an old saying that the only certainty in life are death and taxes. Breast cancer doesn’t have any guarantees on whatever one does. We have high hopes that what is recommended will work. Sometimes it does and other times it doesn’t. No oncologist can predict with certainly that cancer will come back or not. They can go by the statistics that certain stages will more than likely but again, it remains in the area of probability. Stage IV can only be treated and that is why most oncologist want to give a person the best odds on not having the cancer return.

Over my 18 years since diagnose I have read a lot but never read "that 80% of women who do chemotherapy have their cancer return". I don’t believe that statement at all. 70% of women more or less depending on where you read the stats never have their cancer return.

Dr. Susan Love's Breast Book is a good basic book to learn about breast cancer. There is more to staging than node involvement or the grade. She has a web page you might want to read so you do understand some aspects of the disease.

http://www.dslrf.org/breastcancer/content.asp?L2=3&L3=1&SID=154

Doing treatment or not doing them, is a personal decision that each woman makes.

I wish you the best,

Doris

missrenee's picture
missrenee
Posts: 2137
Joined: Apr 2010

First of all, I clicked the wrong button--meant to do "reply" and clicked on "report as offensive". So sorry--mistake.

Anyway, Annie, you sound as if you've made your decision and I respect that. The only thing I wonder about is if you're 100% sure--because you posted here giving your opinion and getting our comments and maybe looking for validation (which you certainly don't need from anyone). I think each and every one of us has to do what's right for us. Unfortunately, Annie, there is no crystal ball to give us the exact thing to do--boy do we wish there was!

You will be in my thoughts and prayers for a good result in whatever you choose. We're here to support you no matter what.

Take good care.

Hugs, Renee

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Annie, I read what you wrote and think you know exactly what you want and are doing exactly what is right for you and that is so important.

I had rads after my lumpectomy, no chemo. It was never even brought up to me as a treatment. I am doing great and enjoying my life to the fullest, which it sounds like you are too.

Take care and know that we are always here for you.

Hugs, Lex

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1650
Joined: Jan 2011

Thanks for sharing Doris!! This sounds more realistic to me.

Double Whammy's picture
Double Whammy
Posts: 2259
Joined: Jun 2010

who declined chemo. I don't know the grade of her cancer, but she was HER-2 neu positive and ER+. It's 8 years later and she's still good to go. Eight years ago, herceptin was not available as initial treatment, only used for recurrence, so she couldn't have herceptin. The thing with her is that she reacts to medications badly - in fact, she coded while undergoing her lumpectomy (from the anesthesia). She apparently has serious reactions to all kinds of meds. Hence, the risk of chemo doing something crazy to her was high.

She was ER+ so she was able to take arimidex. She also had radiation.

Luckily for her, all has been well so far. She worried constantly for years about a recurrence because she didn't take chemo, but feels the arimidex and radiation has served her well. And she still worries now that she's no longer taking arimidex.

She made a very informed decision about this. She is a medical professional (radiation oncology tech) and is married to a radiation oncologist. They were well aware of the risks vs. the benefits for her.

I just read that your dx was in 2010, so your decision was made 2 years ago. Are you now worried about a recurrence?

Suzanne

New Flower
Posts: 3914
Joined: Aug 2009

Welcome to the board. I respect your decision, however agree with Renee' s and Suzanne's question. Have you feel less confident as 2years are comining up? I hope your plastic surgioun will order Bone and PET Scan before reconstruction. I wish you could have better doctors who could explan their recommendations.
Your mother had a very good oncologist who was keeping her alive for 30 years until age 90. Have you talked to your mother's doctor? Since your mother had breast cancer, there is a history of breast cancer in your family. Patients with family history of breast cancer have been treated more aggressively than others. Age plays additional role in recommendations as well.

I do not understand why your husband did not want you to be treated with Chemo
Good luck with reconstruction and hope you will alway be happy with your decision and choices.

AnnieTherese's picture
AnnieTherese
Posts: 67
Joined: Aug 2012

Dear Double Whammy...and all of you who have so generously and quickly responded to me, I am overwhelmed by you...I've only just joined this forum and I've never had such a response...thank you xxx

Yes, it will be 2 yrs at Christmas since my dx (as you put it) dianosis, LOL...I'm not used to these short forms or words. :-) Yeah sure, I worry about it coming back, doesn't everyone...but I'm looking forward to being able to say....it hasn't come back.

Depression....yes I have depression, but it's not a part of the cancer...I was diagnosed with clinical depression 20 yrs ago and am on daily medication for it. I usually end up in hospital because of it every 2 years.

Do I want validation from others about my decision to decline chemo...yeah, sometimes. I was told the only treatment for me was chemo...besides the mastectomy. Which I quite willingly had.

I don't have any friends who have had BC and it's just nice to find ladies who I can talk to and listen to who understand ....

Lots of love to you all....from the other side of the world. xxx

camul's picture
camul
Posts: 2004
Joined: Dec 2010

You are right, this is a very personal decision. I was dx stage 1/2, grade 3. er and pr +. Her2 -. Surgeon said stage 2 because it was not contained in the tumor, but path said 1. Original Onco recommended mastectomy, with chemo as did the surgeon. He left the hospital during treatment to go into private practice with a break in between. I was put with one of his colleagues who was suppose to be tops in the field. She said he was too aggressive that the chances of recurrence were low to none. He was aggressive because of Hormone Replacement Therapy. I had chemo and was on tamoxifen.

I have never regretted the treatments. He was right she was not! It returned, but I did get 8 1/2 years cancer free. There are no guarantee's.

If you have the support of your family and are happy with your decision than that must be the right decision for you and I respect that. You may be one of many who never have a recurrence. I have always heard it was around 30%, but have never read if that was with or without chemo.

Wish you the best!

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

After we've been diagnosed with this crappy disease, the thought of a recurrence is always lurking in our minds. I wish it wasn't, but, it is.

I wholeheartedly understand your declining chemo and wish you all the best.

Lots of hugs,

Megan

AnnieTherese's picture
AnnieTherese
Posts: 67
Joined: Aug 2012

Thanks Megan....I really don't think it would matter if you had chemo or other threatments or not....I think the thought of cancer returning would always be at the back of your mind. It is for me, yet sometimes I feel for sure it will never come back, then at other times, I think....hold on, it just might !! The brain goes on a bit of a rollercoaster ride from time to time.

Cheers, Annie

DebbyM's picture
DebbyM
Posts: 3295
Joined: Oct 2009

I hate the roller coaster that we are on, but, I guess all we can do is hold on and finish the ride! By that, I mean kick cancer to the curb!

You know what you're doing and only you know if it is the best for you, and, that is all that matters as the others said.

Hang in there and keep posting!

Hugs, Debby

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

Yes, the rollercoaster ride that none of us wanted to be on :( It will get better Annie! It just takes time.

Hugs, Megan

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Hi Anne,

When I was first dx'd I came on this site to find others in similiar situations. Sometimes it just helps knowing someone is in the boat with you! A similair circumstance for me is harder to find as breast cancer was my 3rd cancer diagnosis. The first cancer serverly limiting the choices I had.
I too declined chemo for stage 1 IDC. It would reduce the chance of recurrence by 1-2%. The long term effects from the chemo were not worth it for me. I am also a 2 time Hodgkins Lymphoma Survivor who is suffering from the LT Effects from chemo and radiation. In fact, the radiation led to my breast cancer dx (very common for Lymphoma patients treated long ago). Radiation for the BC was not an option or me. Tamoxifen wasn't either because I had a TIA. So, 4+ years ago I had a double mx and no other treatments for the IDC. So far so good!
Good Luck with your decision and congrats on 2 years!
Cathy

AnnieTherese's picture
AnnieTherese
Posts: 67
Joined: Aug 2012

Cathy, thanks for your post. The basic mastectomy I had is nothing compared to what you and other ladies here have or are experiencing. It makes me feel very humble to be in your company. xx

Double Whammy's picture
Double Whammy
Posts: 2259
Joined: Jun 2010

Your individual chance of recurrence is either 0 or 100%, but those percentages we're quoted are nonetheless very important and do reflect on our individual odds - sort of.

The recurrence rates (let's use 3% because that's the number that's been cited here) are for a given group of individuals. For example if 100 patients have the same grade, stage, hormone status, etc. and 10 of them have a recurrence, that means out of 100 women, there is a 10% probability of recurrence. If that group of 100 patients adds chemo and only 7 of them have a recurrence, then it's assumed that chemo reduced the rate of recurrence by 3%. 7 women still had a recurrence, but 3 escaped presumably because they had chemo.

The problem is no one knows who those 3 women are. Nor do they knnow who the 90 are who wouldn't have a recurrence anyway.

For all the variables of my type of cancer, the recurrence rate was 31% without any adjuvant therapy, 21% with hormone therapy alone (I was ER+), and 12% with hormone therapy AND chemotherapy. Chemo reduced the recurrence rate for my type of cancer by 40% even if I took Arimidex. My individual chance for recurrence, however, is still either 0 or 100% because no one knows whether I'm in that group of 88 or in the group of 12.

No one gets 3% cancer. You either get it or you don't. However, if someone told me chemo would only improve my odds by 3%, I'd probably say no thanks, too. And that's why for early stage, low grade Estrogen receptor positive cancers, they use the Oncotype Dx test. And it's all still a crap shoot.

Suzanne

AnnieTherese's picture
AnnieTherese
Posts: 67
Joined: Aug 2012

Yep...that sounds fair enough to me. I guess all any of us can do is wait and see !!

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

I don't put a lot into percentages, as, they are just that. For 3%, I know I wouldn't do chemo. I just want to let you know that we all support you and are here for you always.

Hugs, Diane

AnnieTherese's picture
AnnieTherese
Posts: 67
Joined: Aug 2012

Wow...thanks Diane (( hugs )).

Just last night Brian (hubby) and I were talking about the subject again and he so firmly believes in the decision I've made...and that gives me encouragement too...

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

Your Brian sounds like a great guy who supports you always! I am so happy you have him Annie! We are all here to give you encouragement and support. I hope we've done that for you!

Hugs, Diane

mom62
Posts: 600
Joined: Mar 2004

Annie,

Any decision you make about your own health is just that yours. You don't have to follow what others do, do what is best for you. I have never had a port because I don't want one and I've had chemo twice. I knew it wasn't for me even though I only had one good arm. I don't agree with your doctor you will get cancer back, some people never do. You can never go by statistics as everyone is different. I applaud you for making your own choice about your body, don't feel bad about it.

Terry

AnnieTherese's picture
AnnieTherese
Posts: 67
Joined: Aug 2012

Thanks Mom62.....yeah, we (hubby and I) feel good about "our" decision, he would support me with whatever I decided, but it's all good and I know I'll never regret it, even if the cancer does return....what will be, will be. :-)

DebbyM's picture
DebbyM
Posts: 3295
Joined: Oct 2009

I am glad you and your hubby feel good about your decision Annie. I think you made the right one for you! Wishing you a lifetime free of cancer!

Hugs, Debby

AnnieTherese's picture
AnnieTherese
Posts: 67
Joined: Aug 2012

Thanks so much Debby....Brian has been a great support to me....my rock !! But even if I'd decided to do the chemo, he would have supported me just as much. He always says, if I'm happy, he's happy. But of course with this it's much more serious than just...being happy...it's something we've discussed in depth and both come to the same conclusion.

Cheers, Annie

DebbyM's picture
DebbyM
Posts: 3295
Joined: Oct 2009

We are both blessed Annie to have such wonderful husbands. Mine has been my rock too and I love him so much!!

You take care and know that we are always here for you!

Big hugs, Debby

Lynn Smith
Posts: 1265
Joined: Mar 2011

I think it's up to you.Do what you feel is best.I was told in the very beginning no chemo or radiation but take tamox.I had DCIS non invasive and tumor was very small,clear margins.. I was worried about tamox and wasn't sure I wanted to take it.My doctor then was up front and said my changes of the cancer spreading to other places could be higher.I decided to take the tamox. Since no chemo or radiation I have at least some protection.

Wishing you the very best with whatever decision you make.

Lynn Smith

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