Does anyone ever have IDC and not have adjuvant treatment?

Anonymous

Does anyone ever have IDC and not have adjuvant treatment?

Anonymous

I'm pretty sure the answer is no, but if there is anyone out there, can you please let me know what your circumstances were?

I had a breast removed in 2009 due to extensive DCIS. Now I am going to lose another one on Thursday. I hate the surgery but I'm trying to look at the bright side: no breasts usually means no breast cancer (yes, I know there are exceptions). I've also had various problems with the implant I had put in on my good side so now I will just have foobs which look pretty good (nipple and skin sparing the first time and this time). Oddly, the fact that they don't move suits my active lifestyle and I'm ok with that.

Assumiong Stage I and no lymph node involvement, pre-menopausal and low oncotype score (I don't actually know this yet, tho they seem convinced it's not in my nodes), has anyone escaped chemo and tamoxifen? I don't know which scares me more.

No, I don't want a cute wig. I don't want funky tattoos on my scalp.  

But the side effects and risks of the tamoxifen scare me too.

So if anyone else avoided these things, please let me know if you're out there.

CTMOM1234

hello zachsmom, I know we've corresponded on these boards before.

I'm stage 1, DCIS with 1.75 mm IDC. Had lumpectomy and radiation. No chemo. prescribed and I opted out of tamoxifen.

 Good luck with the decisions and upcoming surgery.

MarieKelly

I had no adjuvant treatment at all - only had a wide margin lumpectomy with biopsy track removal and refused the standard radiation after lumpectomy, tamoxifen and arimidex that were all recommended. I was diagnosed a week after my 49th birthday over 6 years ago but had gone into natural menopause 8 months prior to the diagnosis. My single tumor was about 1 cm, grade 1 (well differentiated), and a mixture of about 60% IDC and 40% DCIS.  My Ki-67 was 5%. No recurrence as yet.  I get a yearly mammogram and that's it in the way of follow up. Haven't even seen an oncologist since shortly after the surgery.  If I do get a recurrence or a new primary someday, I plan to only have a lumpectomy again - assuming of course,  that's there's nothing drastically different in the pathology or the overall situation.

Best wishes to you -

Anonymous

Interesting. I'm not a candidate for radiation because of my implants and I'm 46 with absolutely no signs of menopause. It seems like Tamoxifen or chemo are the only roads to go down after this. Guess I'll know more after the surgery and meeting with the oncologist. 

barbe1958

I had nothing after my double mast. I was IDC 1 cm ER/PR+ HER2-

Anonymous

Really? How old were you and how long ago was it? Did you do Onco type testing?

ADK

I had IDC and DCIS - I did two lumpectomies and radiation - chemo was not recommended because the IDC was small (I can't remember the size, it's been 4 years).  I also did not do onco type testing.  IDC does not automatically mean you need chemo. 

Anonymous

Right - but you had radiation and I'm not a candidate for that. As for the chemo, it seems it will depend on my Oncotype score.

Why did you opt out of the test?  

ADK

It wasn't offered to me.

Jellydonut

I also refused all adjuvant treatment after surgery tho I did have two recurrences four years later (in 2006) and continued to refuse everything except surgery (see my bio).

You have to make the decision that's right for you after taking all factors into account. 

Wishing you the best.

mom3band1g

My Aunt had stage II with a unilateral mast and no other treatment.  She is on Arimidex.  She just hit her 5 yr mark!

barbe1958

I'm not on Arimidex or Tamoxifen or Zometa or anything!

Onco type testing is done only when you're going to take Tamoxifen as the score is dependant on you being on Tamox. It's not offered anywhere except the USA as they hold the patent.

I was 50 at the time of diagnosis. Am now 52.

Anonymous

But were any of you guys (or the folks you knew) pre-menopausal? It seems that for us, the only drug is Tamoxifen.

anondenet

Me too. Same as Barbe. I was premeno 16 years ago. No Tamox.

TNgolfer

Ladies,

Interesting thread....I had ILC and after 2 lumpectomies with no clean margins had a bilat mastectomy.  The tumor was 2.1 cm and I was node negative, ER+ and PR+ with a Ki-67 of less than 5%.  I am post menopausal.  Oncotype Dx score was 19; but I opted for (and Onc agreed) no chemo.  Obviously had no radiation as I had the Mx instead.  Have been on Arimidex for 3 months and took my LAST pill yesterday.  I have been getting progressively more and more depressed.  Funny how the lack estrogen makes you feel like you have terminal PMS.  I have cried for the last 48 hours.  I am done with adjuvant therapy and all its side effects.  This takes courage (maybe), but I have come to realize that most of the testing and stats for all this Tamox and/or Arimidex comes from the pharmaceutical company that makes the drugs!

anondenet

TN, there aren't any "overall" survival statistics for Arimidex anyway. It only provides a small benefit for recurrence, not survival.  But you may die sooner from heart disease, osteoporosis, car crashes, suicide, etc., related to the side effects and estrogen suppression.

I wish this stuff was tested and proven for overall survival before they put a gun to our heads and said you MUST take it or you will die.

ishobie

Hi, when I was first diagnosed in april 2010, I was assured from my surgeon that my biopsy only showed DCIS and I would not need any treatment, even though I was HER2+. My family was not happy about that and didn't agree at all.  I had a mastectomy and had DCIS AND IDC, Stage 1, very small tumor, <1cm.I went to two oncologists and both said I needed chemo and herceptin, 6 treatments of TCH , three weeks apart and 9 months of herceptin three weeks apart. I had a negative SNB and no nodes involved, but my oncologist explained, it takes one cell to get in your body and then she wouldn't be able to cure me when it returned(and she was 100% sure it would return at some point), treat me, but not cure me.  Would I take that chance with me life, no--never.  I only have had one chemo treatment and going on my second Wednesday-already lost some hair. I did get an awesome wig and it looks like me.. it isn't fun and i would rather not be doing this--but honestly---- not having treatment with IDC with or without nodes involved, sounds very very dangerous to me. But that is JMO. 

I hope you make the right choices for you.

regards

Isabel

Anonymous

Why was she 100% sure it would return? Becasue of the HER2+? That sounds like a pretty strong statement.

barbe1958

I would run from any doc that was 100% sure of something...

doingbetter

I'm also curious about how the dr could be 100% sure.  I'd love it if the oncologists could be that certain of anything.  My understanding is that treatment is becoming more and more personalized and it really depends on your specifics.  I know many people who received no further treatment after surgery and are doing well.  Sadly, the exact opposite is also true.  I think it's really hard for anyone to make that call.

Anonymous

Exactly - and I'm not saying I would refuse treatment that my onc. thought was necessary - I was just curious as to if there are people out there who walked away after a bilateral MX.

TNgolfer

anondenet, Thanks for the post.  I believe you are correct....there are a whole lot of bc patients who are not followed and we will never know what the best option(s) are, because we don't have the whole picture.

ishobie, Obviously when one has DCIS and/or IDC you should treat that with whatever procedures are best, but I, too, would question how anyone (including an Oncologist) could say anything is 100% sure.

I hate that some in the medical profession choose to motivate us with fear; e.g., it takes one cell...  That produces such an image with us, that, of course, we would want to do anything to prevent it.  We all have to do what is comfortable for us.  We are all individuals and our bc is different.  I only know that not all MD's graduated at the top of their class and not all of them stay on top of the latest info.  While I respect them, I don't believe that each one of them has the right answer...this is not an exact science and I have come to realize that they know less about bc than they know (for sure).

I also believe that adjuvant therapy is an entirely different therapy than therapy for an active cancer.

May we all find the wisdom to make the right choices for us!

MrsNice

well, I feel so much better after reading all of this.  ack.  it is sooo difficult that there is not one appropriate answer/approach for each diagnosis.  I am having the "wide excision" lumpectomy on July 8th to "hopefully" get all of the cancer.  but since none of the imaging scans show anything to clarify, i don't know if i'll ever be sure whether there's cancer growing inside me or not.  the mri that was done in an 'open' mri machine shows additional spots in my R breast; "somewhat suspicious" or "unable to exclude disease".  well that is so comforting!  i feel like swearing and drinking like a sailor and telling breast cancer to take a f***ing hike!

TNgolfer

MrsNice,

The only thing you will know for sure is when you look at the pathology report....you will find out what it "was"....and hopefully that will be correct.  Unfortunately a lot of the screening devices we have are not good enough.  My cancer did not show on a mammogram and I had 2 needle biopsies that were benign....it was only because of a dilligent breast surgeon who suggested the lumpectomy and the pathologist that received the sample that we knew it was ILC.

Not that you need it, but here's permission to go ahead and swear, drink (like a sailor) and tell your bc to take a f***ing hike!!!

Luna5

I had mastectomy and prophy mastectomy on other side...BMX

Postmenopausal

no Tamox or AIs...I use bio identical progesterone cream

Lots of natural aromatase inhibitors like melatonin, chrysin, quercetin with bromelain, apples and others

Had Hysty/Ooph for my own peace of mind.  That might have been overkill but I did it anyway.

Anonymous

I had DCIS.  Bilaterial MX which found 5mm IDC.  I was 40 and no where close to menopause.

I was offered nothing else.  I wanted something more.  Nope.  They wouldn't do it. 

2 years later....  I have stage IV cancer.

lisa

Luna5

OncotypeDX test assumes Tamoxifen.  I chose not to do Tamox....this only means my 10 yr distant recurrence rate might be higher than 3%  except that I have heard that the Tamox is primarily to keep me from having a recurrence in the other breast which I no longer have.  Even if this means my local recurrence of 0% would be 50% worse and my distant recurrence rate would be 50% worse ...4.5%???.....I'm okay with those odds.

So far, the only study I have seen quoted anywhere by anybody (send me a new one if you have it) is the one that said normally 1 out of 100 had no recurrence but when Tamox was given...2 out of 100 had no recurrence.....they called this a 50% benefit with Tamox.  I call this a 2% benefit and decided not to take it.   Also, their control group was not limited to people with my stats who had double mastectomies.  I decided to rely on surgery and a complete change in what I eat and drink as my cure.  I also use a lot of organic tumeric/curcumin with olive oil and black pepper.  The drug people are currently trying to devise a drug that combines curcumin and Tamox as "they" have found that curcumin helps the effectiveness of Tamox.  Since they have not run a double blind study on curcumin separate from Tamox....I am choosing to believe that curcumin is the good part of the combination they are trying to patent.

Luna5

Zachsmom......my onco insisted that I not do the OncotypeDX test and that I should do chemo.  It took me a lot of begging to get her to order the test and put me way behind on having significant time to decide in a timely way about chemo.  She then insisted I do Tamox and refused to order the CYP2D6 test to see if Tamox would even work for me.  I had to get my surgeon to order it for me.  It was sent to my onco who refused to give me the results and said "well, if you haven't started the Tamox then you have clearly made up your mind".  I got the results from my surgeon and surprise! I am missing one of the alleles on the gene which means its affects for me are not really known.  My onco refused to order the test on the basis that "Tamoxifen works for everyone."  My onco actually said at my first visit that she doesn't want to get sued in a few years for not recommending a treatment.

I decided I don't want to have a one size fits all treatment.

You need to take all the time you need to research until your brain hurts.  Ask every question you can think of and research some more.

There is no one right way, unfortunately.  You must choose. 

My goofball oncologist who thought I wasn't qualified enough to know I wanted the OncotypeDX and CYP2D6 tests thought I was qualified to choose between the two chemo cocktails she offered me....how in the world was I supposed to know about that ?????

We make these life altering decisions in less time than we take to buy a new car or house.  Take whatever time you need to be sure of the decision you choose and then don't look back.

Anonymous

"It was sent to my onco who refused to give me the results and said "well, if you haven't started the Tamox then you have clearly made up your mind". 

Refused to give you results??

I'm an attorney, but you needn't be one to know that violates HIPAA, an important federal law. No one can refuse to give you test results, refuse to give you your own medical records, or share those records without your consent.

Never mind the cancer, please tell me why you continued to speak to her after that?? You can file an action against her under HIPAA without a lawyer.

Don't ever stand for that.  

Anonymous

And Lisa - I sincerely hope you have a good med/mal attorney. I am so sorry. That is an awful story. I feel terrible even posting my stuff after reading that.