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Topic: Chemo??

Forum: IDC (Invasive Ductal Carcinoma) — Just diagnosed, in treatment, or finished treatment for IDC.

Posted on: Jul 22, 2019 04:07PM - edited Jul 22, 2019 04:15PM by Lengl11

Lengl11 wrote:

Hello. I just received my oncotype results....21. I'm 47 yrs old. This whole time I've been lead to believe chemo was very unlikely. Now this! I knew all along I would be starting hormone therapy soon but the chemo suggestion was unexpected. My mo is recommending the chemo and I just can't decide. Hardest decision ever!

Age 47...Oncotype 21 Dx 4/19/2019, IDC, Left, 2cm, Stage IIA, Grade 3, 1/13 nodes, ER+/PR+, HER2- (FISH) Surgery 5/28/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/28/2019 Lymph node removal: Left Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 22, 2019 05:06PM Beesie wrote:

It's not the Oncotype score that you have to consider, it's what the Oncotype score means in terms of metastatic risk and the benefit of chemo.

With your 21 score, has your MO told you your risk of a metastatic recurrence with Tamoxifen alone, versus what it would be with chemo and Tamoxifen? Is the risk level with Tamoxifen alone too high for your risk tolerance? Is the risk reduction you get from chemo large enough that it's worth it to you?

This is the chart that I pulled from the TAILORx study, which I believe is now being used by Genomic Health to determine Oncotype risk levels for each score, but you should definitely verify this info with your MO, if you haven't already been provided with this data.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 22, 2019 05:43PM - edited Jul 22, 2019 05:44PM by DorothyB

It is a really tough decision!

My score is 29, but I am over 50 so a different "table". I was also told that I would not need chemo, so my score came as a shock to me as well. My med onc is recommending chemo. I've debated back & forth and have decided for me personally not to do chemo.

You will need to see how much benefit you might get from chemo and decide what is right for you. Think about "what if I do chemo" and have less chance of recurrence . . . then think about "what if I do not do chemo" and what if I do have a recurrence . . .

Looking at the chart, looks like maybe a 4% chance of recurrence if you do both and a 7% or 8% chance if you don't do chemo. Is doing chemo worth the peace of mind of reducing recurrence chance by that amount? For many people it is, for some people it isn't.

Diag. 4/19/2019 ER+ PR+ HER2 neg Lumpectomy 5/29/2019 IDC w/ DICS 2.0 cm Grade 3
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Jul 22, 2019 05:45PM - edited Jul 22, 2019 06:01PM by Lengl11

This Post was deleted by Lengl11.
Age 47...Oncotype 21 Dx 4/19/2019, IDC, Left, 2cm, Stage IIA, Grade 3, 1/13 nodes, ER+/PR+, HER2- (FISH) Surgery 5/28/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/28/2019 Lymph node removal: Left Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 22, 2019 06:05PM Beesie wrote:

Lengl11, I was just responding to your post when you deleted it. Yes, I am interpreting the chart as you did. So that's the risk reduction benefit from chemo. Does that make chemo worth it for you? Only you can decide that; as Dorothy said, for some people that's enough to warrant taking chemo, and for others it's not.

But please, as I said in my previous post, check with your oncologist about these figures.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 22, 2019 06:47PM kec1972 wrote:

Hi Lengl11, I’m 46 and also had an oncoscore of 21. I decided no chemo for a potential benefit of only 3-4%. Not worth the toxicity of chemo, in my opinion.

Dx 12/17/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 1/7/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 2/20/2019 Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 23, 2019 09:05AM edwards750 wrote:

I was DX with IDC in 2011. I was Stage 1b, Grade 1 but a micromet was discovered in the SN when my Path report came back after my lumpectomy. My BS said it would get me chemo. Not his call. My MO ordered the Oncotype test. She said women had been over treated for years and this test afforded themmore information to determine whether chemo was necessary. My score came back@11 with an 8% chance of recurrence if I took Tamoxifen for 5 years which I did. That report/score allowed me to dodge chemo.

To be honest I’m not sure I would have done chemo if it had been recommended. I had a small tumor. Not considered aggressive.

It’s a tough decision to be sure. Even though I wouldn’t have wanted to do chemo - for that matter who would - I would have wrestled with doing everything possible to ward off a recurrence versus enduring the horrific side effects of chemo for a possible gain of a few % points.

Bottom line is it’s your body and your life and your call.

Diane

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Jul 23, 2019 12:48PM jenni0102 wrote:

I was dx with IDC at the end of May. I had a lumpectomy at the end of June. Final pathology report showed stage 1b, grade 1, ER+, tumor was 2.8cm and 1 out of 4 lymph nodes came back positive with 4mm of cancer. My oncologist wants me to do 6 chemo treatments, 1 every 3 weeks, then radiation and then hormone therapy. When he told me this, I told him that I did not think I wanted to do chemo. He suggested the oncotype test. He said that the decision was mine, but he wanted to make sure that I have all of the info before I make a final decision. My results are in and I go in to get them Friday, but I can already tell you, I have already decided that I will not do chemo, regardless of what the score is. I just do not think that all of the possible side effects and the guaranteed side effects of chemo are worth the small percentage change in the chance of recurrence. That is my own personal decision after doing a lot of research, speaking with my husband and lots of prayer. I will continue on with my original plan of radiation and then hormone therapy. I am also going to do as much as I can on my own with weight management, exercise, diet and supplements. Now, like I said, this is my own decision for me. That is what everyone has to so. Make a decision that they feel is best for them.

Everyone is different and responds to all of these treatments differently. I saw a lady on here the other day that was diagnosed with almost the exact same BC as me. She had a lumpectomy, did chemo, did radiation and was doing the hormone therapy when 3 years after her original diagnosis she was diagnosed with a new IDC. So once again, she did lumpectomy, chemo, and radiation and has just recently been diagnosed with stage iv metastatic BC. My point with this story is that she went through the agony of chemo twice just to have it come back and then worse. Not to sound like a downer, but my thoughts are, if it is going to come back, it is going to come back and I do not believe that chemo is a huge deciding factor in that. So, if I do not do chemo now and my cancer comes back, I will tackle it then and make new decisions then based on what I know at that time. As for now, my decision is no chemo.

I pray that everyone makes the best decisions for themselves and that there is no judgment from others for your decisions. They are our bodies and we have the right to make the decisions that we are comfortable with. My prayers are with you all!!!!

Heart

Dx 5/29/2019, IDC, Left, 2cm, Stage IB, Grade 1, 1/4 nodes, ER+/PR-, HER2- Surgery 6/25/2019 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/5/2019 Whole-breast: Breast, Lymph nodes
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Jul 23, 2019 01:16PM Hopeful82014 wrote:

I don't know if the OP will see this but I think it's important to point out that her tumor was grade 3 and she had one positive node. The TailorX results are not validated for node positive patients and the results of the RxPonder trial are not yet available. Oncotype DX results are different for node+ tests, with distant recurrence only out to 5 years discussed. In addition, the test is not as thoroughly validated for N+ as for N-. In short, alot of what's been said above wouldn't necessarily apply to lengl11.

It's a really tough decision to make - no question. My advice is to discuss it as thoroughly as you need to with your MO in order to feel o.k. one way or the other. Don't rush the decision any more than you can help. Good luck.

Dx IDC
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Jul 23, 2019 01:21PM Beesie wrote:

Hopeful, excellent points. Yes, Lengl11 needs to speak to her Oncologist to get the risk figures and chemo benefit that is specific to her situation.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jul 23, 2019 01:49PM Lengl11 wrote:

Thanks everyone for all your responses. I wish I would’ve been on this site from the beginning of this journey. I’ve made an appointment today with another medical oncologist. This time I’m going to go to John Hopkins in Maryland. Another set of eyes may be helpful. I’ve also scheduled an appointment with the radiation specialist because radiation has never been brought up to me as an option. They said after a mastectomy it usually isn’t given unless there is a positive node, and since my cancer on the node was so tiny I may not need radiation. So we will see how all this goes.

Age 47...Oncotype 21 Dx 4/19/2019, IDC, Left, 2cm, Stage IIA, Grade 3, 1/13 nodes, ER+/PR+, HER2- (FISH) Surgery 5/28/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/28/2019 Lymph node removal: Left Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 23, 2019 02:00PM Lengl11 wrote:

Also wanted to mention that because of all the helpful info I’ve gotten from this site,I also asked for the doctors to do one of those onco prediction things online for me. She agreed to that. I’m also gonna call my insurance and see about getting the mammaprint done. I’m definitely becoming a more informed patient because of this site. Thanks everyone!

Age 47...Oncotype 21 Dx 4/19/2019, IDC, Left, 2cm, Stage IIA, Grade 3, 1/13 nodes, ER+/PR+, HER2- (FISH) Surgery 5/28/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/28/2019 Lymph node removal: Left Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 5, 2019 04:42PM - edited Aug 5, 2019 04:42PM by kec1972

Hi Llengl, just wondering what you ended up deciding regarding chemo?

Dx 12/17/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 1/7/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 2/20/2019 Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 5, 2019 09:41PM OnTarget wrote:

Also, table 2 from the June 20, 2019 TAILORx article shows how clinical risk changes those scores for 9 year distant recurrence.

If you are under 50, and have an intermediate Oncotype score of 21, your risk of recurrence with tamoxifen alone is either 11.4%( low clinical risk) or 18.8% (high clinical risk).

You reduce your risk in these amounts by adding chemo: 6.4% and 8.7% respectively.

The challenge is that the experts feel that the cytotoxicity of chemo is not the cause of the improvement, instead it is the ovarian suppression caused by chemo. They have a reasonable argument for this, but in my opinion it is just a great theory derived from study results. It is not proven, yet.

In my case, I feel like in 5 or 10 years there will be a study and I'll either be happy I did chemo or kicking myself.

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 6, 2019 12:00AM CindyNY wrote:

My MO recommended chemo. I didn't go along with it, based on my age & oncologist score of 19. I was waiting for TailorRX, but I had to decide before it was released. Long story short is she said some people will throw everything at it (BC) that they can for any % increase in it not coming back. It's a personal decision you make, and have to live with. Best wishes to you.

dx at 58, no family history, onco = 19 Dx 10/6/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 11/1/2017 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 11/14/2017 Lumpectomy: Left Radiation Therapy 12/26/2017 Whole-breast: Breast Hormonal Therapy 3/1/2018 Arimidex (anastrozole)
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Aug 11, 2019 07:30PM msphil wrote:

hello sweetie everyone s different I've been on here long long time encouraging others. I worked in medical field almost entire adult life my fiance were making wedding plans for our 2nd marriages I was 42 and had prayed for this man then I find lump in breast no pain just little sore round nipple also sore under my left arm also. Well after biopsy was diagnosed with breast cancer. Had my cry then decided to fight with better diet faith and Positive thoughts. Had 3mo chemo before after Lmast idc stage 2 0/3 nodes we got married still bald I love this man he got down on one knee while I just finished throwing up to propose. then rads 7wks then tamoxifen. Praise God I am now 25yr Survivor..msphil

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Aug 13, 2019 05:03PM Lengl11 wrote:

thank you everyone! I had made my final decision to NOT do chemo and then yesterday I changed my mind. I decided I didn’t like the uncertainty I was feeling about it. So I decided to just do the damn thing! I’m starting next Wednesday. Hoping for the best.

Age 47...Oncotype 21 Dx 4/19/2019, IDC, Left, 2cm, Stage IIA, Grade 3, 1/13 nodes, ER+/PR+, HER2- (FISH) Surgery 5/28/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/28/2019 Lymph node removal: Left Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 14, 2019 01:06PM CindyNY wrote:

Reach out to the chemo forum, you'll get all kinds of support. You'll get through this! HUGS

dx at 58, no family history, onco = 19 Dx 10/6/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 11/1/2017 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 11/14/2017 Lumpectomy: Left Radiation Therapy 12/26/2017 Whole-breast: Breast Hormonal Therapy 3/1/2018 Arimidex (anastrozole)

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