Thinking of refusing chemo with 26 oncotype

pineappleskies

I'm 35 and my doctors seem to want to be very aggressive with my treatment because I am so young. Up until I received my Oncotype Dx, it seemed like my treatment was going to be lumpectomy and radiation plus tamoxifen for 5 or so years. I accepted this, at least to give it a try and see how I feel. Now I found out my oncotype is 26 and it's right on the border of what my oncologist considers high risk (he says anything over 26 gets chemo).

I am struggling with this. Everything in my intuition from the beginning has told me no chemo, not necessary. But every appt they do the most to scare me with statistics. And my husband wants me to do everything possible to get rid of this, they are scaring him too. I need my closest allies to trust my decisions and believe I will survive as much as I believe it (and I do). But the doubt of this decision sneaks in sometimes. It's a big deal!

Just sort of venting here, and looking for experiences if you're willing to share. Did you refuse chemo? Do you regret it? I am getting 2nd and 3rd opinions, but all my doctors are under the same facility because of my insurance so it is likely they may all recommend the exact same treatment.

My full diagnosis is IDC Grade 2 tumor, 1.3 cm, no node involvement (they removed 3), Stage 1A, ER+ PR+ HER2- w/ oncotype of 26. No BRCA gene mutations.

I take a very holistic approach to every area of my life and am very into alternative medicine, so this feeling of being treated like a walking tumor as opposed to a unique human being really irks me and causes me to lose trust in my doctors, naturally.

juniper

A 26 does put you in the murky area. I was your age at diagnosis - but I was diagnosed at a later stage and was HER2++.

The good news is that you don't have to make a quick decision. You can take the time to find the "right" doctor and treatment plan that you feel comfortable with. Go easy on your spouse - he's struggling too.

Denise-G

pineappleskies - my recommendation would be to get a second opinion at an NCI Designated Cancer Center that has the team approach.

Listening to one doctor never works for me. Listening to a team of doctors always works for me.

https://www.cancer.gov/research/nci-role/cancer-centers

ElaineTherese

Hi!

You could always ask for a Mammaprint test. Mammaprint tells you whether you are at high or low risk for metastisizing, with no intermediate range.

I said "yes" to chemo. But, I had a large, aggressive tumor (triple positive, Grade 3) so it was a no-brainer for me.

edwards750

What did the Oncotype test say your % of recurrence was? Mine was 8%. I didn’t have chemo. My score was 11. I had IDC, Stage 1b, Grade 1. Lumpectomy and 33 radiation treatments and 5 years on Tamoxifen.

I think the fact you are young is contributing to the aggressive approach of treatment plus the 26 score. I understand your husband’s feelings because he is scared too but it is really your choice primarily. Chemo is no walk in the park. I had friends who had it. Everyone is different but they did well with the side effects. They all had aggressive cancers. Had I not had such a low score I withdrew have had to have it.

If your second opinions concur then you have a decision to make and it won’t be easy but it has to be your decision and what you think is best.

Be sure whatever you decide you don’t second guess yourself and don’t look back.

Diane

Georgia1

I agree on getting a second opinion, even if you have to pay out of pocket for it. Find an experienced oncologist and make a big list of questions in advance. But ultimately it is your choice: if you can deal with the possibility of a recurrence and another surgery, and you are comfortable with the regular monitoring, I would support you passing on chemo. But it does make radiation and an AI (not Tamoxifen) more important.

edwards750

One other thing -There are a number of women on this website who passed on chemo despite their doctor’s recommendations. So far, so good for them. I wondered if my score had come back like your’s what I would have done/or do. It’s easy for others to tell you what you should do but frankly it’s not happening to them - it’s happening to you. I can’t say with absolute certainty that I would have done it. For the record I’m pretty sure my husband would have reacted like yours.

I have a friend who is a nurse at St. Jude. She wanted to have a double MX. Her MO, and coincidentally mine too, advised a lumpectomy. He is all about saving the breast lopsided or not like mine. She took her case to the director of the West Cancer Clinic. He agreed with her decision. Of course they couldn’t make her go one way or the other. My point is she made the final decision.

Some doctors take it personally if you go against their medical advice. Fact is it’s your life not theirs. All they can do is advise you.

Diane

pineappleskies

Thank you everyone. I am meeting with a few oncologists to see what they have to say. I haven't been given statistics yet as far as what % chemo will improve my survival rate vs. just doing radiation and hormone blocking therapy. I am also trying to get in for an out-of-pocket 2nd opinion at UCLA cancer center. I will post an update once I get more information and make a decision.

exercise_guru

I think a strong consideration being so young involves the side effects of chemo. It often shuts down your ovaries. This would impact your sexuality and family planning. Much more to consider than just the oncotype. Look up the SOFT and TEXTA studies.

Personally being so young I think it worth considering a dbl.mastectomy and tamoxifen with no radiation atleast get the information on that. They have significanly improved the procedure and while its not a california hollywood job many women are happy with the results. Many have had nipple sparing successfully which for me was the hardest to face the loss of.

It's a lot to process get a second opinion or a mamaprint. Insist they explain what put you at a 26. For example maybe it was the profile of the tumor or maybe it was your age. This is worth knowing.

bluepearl

That oncotypeDX is probably reflecting your age. The rest of the tumour profile is pretty good. Almost always, young women are advised to get chemotherapy even WITH good prognostic tumours

; there is just something about young women's bodies cancer likes.

pineappleskies

Wow, interesting. I didn't realize OncotypeDX was affected by age, I wonder if that is the case for me since everything else about it seems not really aggressive. Thank you, more questions to ask when I see my oncologists. I've got 2 new oncologists I'm interviewing plus an out-of-pocket third opinion at UCLA with a doctor who is well-versed in complementary medicine.

bella2013

At age 35, your ovaries are still producing estrogen. When you have an estrogen positive tumor, the tumor thrives on estrogen. A question to ask the oncologists: should you have your ovaries removed? That could be a difficult decision based on your reproduction plans.

I encourage you to think about your future. Don't get lulled into thinking that the cancer isn't that aggressive or that bad. Cancer is cancer and it's devastating. The goal is to be cancer free. I understand not wanting chemo. I explored all other options. I chose a BMX with DIEP Flap reconstruction. The BMX was a simple mastectomy. Since my lymph nodes were clear there would not be any nodes taken with my breasts. My tumor was also IDC. They did not remove any muscle from my chest wall. Having the BMX took radiation and chemo off the table. My Oncotype DX is 14.

I am now trying to come to terms with hormone therapy. I don't want to put toxic substances in my body either. I am still recovering from my surgery and am very comfortable with my decision.

It's good that you are getting additional opinions. I pray that you will have peace with the path that you choose. Let us know how you are doing

Meow13

It comes down to a balance of risks. Chemo does not ensure a cure by any means. You make the decisions, there is no right course of treatmemt.

farmladync

I didn't do chemo or radiation after considering all the side effects . My advise is to read all you can about your type of breast cancer . Pray ( if your a spiritual person ) before taking treatments . I don't regret not having the recommended treatments , of course most doctors don't like it when you refuse . It's a personal choice . My husband and family understood my decision .

moth

I'm 50 and I was going to FIGHT for chemo if they didn't offer it to me. If I were 35yo I would be throwing everything at it. My oncologist said you get ONE shot to hit it hard at the outset. No guarantees. Chemo might not get it all and it might still prove fatal. We just don't know enough yet about whether it will recur or not.

I actually had a whole stack of papers printed about intermediate scores and how to proceed - turned out not needing them as my onco score was nowhere near intermediate - & as I understood it, the younger you are, the more able to withstand chemo (ie, no serious co-morbidities) the more you should consider doing it unless your onco score was super low.

Bottom line is I'm more scared of recurrence than chemo. It's a hard decision and one that you have to be able to walk away from and not second guess ever again. Best wishes as you navigate this.

pineappleskies

The fertility aspect... My husband and I have been trying to have a baby for 2 years. We've suffered 5 miscarriages (the first 4 were due to a uterine anomaly which I had corrected). The last miscarriage was 2 months before I was diagnosed. We have been told that a gestational surrogate might be the best option for us, even before the cancer diagnosis. We're freezing embryos before I start any treatment. One thing I need to ask about each possible treatment path is if I will be able to carry a child via IVF or if a surrogate will be the only option for our embryos after I complete whatever treatment I choose.

NancyHB

Just a quick - but important - clarification: the Oncotype score does not take age into account, it is based solely on tumor orofile

Painter137

I am struggling too.. with my treatment plan My original tumor was stage 1A grade 1 with a KI67 score at 7 then my onco test came back at 26 which puts me in the high risk for recurrence! my tumor was ER positive progesterone negative and her2 negative I want to treat alternatively but my oncologist is against it.. struggling with my decision

Painter137

I am struggling too.. with my treatment plan My original tumor was stage 1A grade 1 with a KI67 score at 7 then my onco test came back at 26 which puts me in the high risk for recurrence! my tumor was ER positive progesterone negative and her2 negative I want to treat alternatively but my oncologist is against it.. struggling with my decision

L-O-R-I

Hi Painter 137,

I too have refused these treatments.  I was diagnosed in May and have been doing alternative methods only.  

L-O-R-I

I started out with a Ductal Papilloma, which I have had in the past, and had it removed, as I had done in the past.  The Biopsy came back benign so I was not concerned at all.  When they removed it, cancer cells showed up on the Pathology Report.  It was almost a month before I found that out and I was quite shocked!  I am 57 and have known my entire adult life that if I ever got cancer, I would chose an alternative method of curing it.  What are you considering doing if you don't do Chemo or Radiation?  

vampeyes

42 at diagnosis, Oncotype 21, no node involvement, 1 cm, positive margins for another tumor, no chemo for me. ER AND PR positive. Was told by oncologist Tamoxifen would be enough plus radiation. 10 years on Tamoxifen for me.

It's a really hard decision as chemo can do a number on your body as well. Good luck with your decision.

xxx

Lanadag

Hi, I too am newly diagnosed with Occult lymph node metastatic breast cancer ER+/PR+, not sure what Stage or Grade. Still didn't master the lingo. I gave myself a month to decide what to do, I'm ok with surgery, but not chemo, radiation or hormone therapy. I've been into healthy lifestyle all my life, active and feeling great. I'm 58 and finally almost free of hot flashes. It's really hard to decide what to do and to subject yourself to such a harsh treatments. So glad there are others like me. Just wondering if anyone knows of any studies of survival rate of women that refused chemo and radiation?

Painter137

Thank you for replying I am not sure which alternatives but I do know diet with lots of organic cruciferous vegetables is in the forefront! I was a little blindsided as t my appt today as I am a 14 year survivor had a mastectomy and chemo in 2004' now another primary in my remaining breast! This time around is even harder I am 58 and have M.S. also which started a week after my mastectomy! L-O-R-I can you tell me what treatments you are doing? It would be great to hear from some long time survivors who refused chemo rads and hormones!

L-O-R-I

Hi Painter137, at risk of sounding fanatical, which I assure you that I am not, I will attach a list that I made up for myself, which makes it easier for me to keep track of which ones I have taken for the day and which ones I still need to take.   I draw a line through the time taken so I don't forget anything or double-up on anything.  I date each page as well because there are changes from time to time as I learn more and more.   At first it seemed like a full time job, but you do get used to it.  I also have an exercise routine, a meditation routine, and a few other routines on top of that.  And yes, I do have a real job 5 days a week!!  You mentioned about wanting to hear from some long-time survivors who have refused chemo, radiation, and hormones.  I am not yet one of those people, but I do know several survivors personally, which has made me choose the direction that I am going.

Painter137

I do not think you are fanatical but I do think we have to be with whatever treatment we decide to do it can only work in our favor! I am starting a ketogenic diet and I am trying to find a holistic oncologist. I had a lumpectomy on Aug 10th so I am getting pressure from my Oncologist.He wants me to do rads , chemo and hormones! He really scared me yesterday at my appt so I need to move forward! I had a great tumor profile as far as size and grade but I guess the lack of progesterone upped my onco score! I know the value of all of the supplements you are taking andI admire what you are doing it's not easy no matter which path we follow! Are you working with a naturopath doctor?

JoE777

DX 2012 IDC stage 2A , grade 1, HR+, 15 oncoDXscore, no node involvement, clean margins, lumpectomy, and 16 rad treatment, femara 2 yrs. I stopped AIs after 2 years , diagnosed metastatic to bone and lung March 2018.

L-O-R-I

Painter137   I am working with a Naturopathic Dr.  The first 6 items on my list were recommended by him.  He also supports all of the other things that I have chosen to take and to do.  My Surgeon was not happy with me either and my Family Dr. flat out told me that what I am doing will not work (I showed her my list) and that she doesn't want me to die!  That really sent my husband for a loop, which I didn't appreciate.  

JoE777   What do you mean by "Als"?  I'm so sorry for you that you are going through so much again!!  In 2012, what are the therapies that you underwent?

KatyK

Such a difficult choice to make! Treatment issues are always difficult. I had an oncotype score of 6 about 11 years ago and sadly had a recurrence last year - lung and bones. I could not tolerate tamoxifen, horrible SE so maybe that would have made a difference, maybe not. Stupid cancer does what it wants! And I did live a very healthy lifestyle- cancer doesn’t care. I’m sorry to hear this happened to you at such a young age. Wish you all the best in treatment and in making a difficult choice.

ktab96

I know this thread started in March but wanted to share my story

I was diagnosed with Stage 1, Grade 3 breast cancer in 2011. There was no lymph node involvement I had a lumpectomy and targeted radiation. My oncotype score was 25 so I totally understand your dilemma. I was given the option for chemo which I turned down. As an alternative I accepted 10 years of adjunct therapy. (5 years Femara/Anastrozole, 5 Years Tamoxifen). I had my ovaries removed 2 yrs prior because of tumors. In April I celebrated 7 years of being cancer free. I have not had any recurrences. Life is good

I hope, what ever path you chose, you are doing well.

L-O-R-I

Congratulations, ktab96!!  I believe that it is good to go with your instinct.  If you had taken the chemo treatment, your outcome could have been different.  It must be a good feeling to know that you did what you chose to do and that it worked so well for you!