Declined chemotherapy...

AnnieTherese said:

Grade...3....not stage 3.
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

AnnieTherese said:

Thanks Patricia....I think
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

Double Whammy said:

Not me, but I do have a good friend
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

AnnieTherese said:

Dear Double Whammy...and all
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

LoveBabyJesus said:

Same here!
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

roseann4 said:

Hi Annie!
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

Megan M said:

After we've been diagnosed
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

Double Whammy said:

Rate or recurrence
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