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Topic: Did anyone freak out from NOT getting recommendation for chemo?

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

Posted on: Jul 11, 2018 04:30PM - edited Aug 28, 2018 08:30PM by maiyen

maiyen wrote:

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Jul 11, 2018 04:33PM Runrcrb wrote:

do you have cancer in any lymph nodes? That is a factor in addition to oncotype analysis.


Dx 6/27/2016, IDC, Right, 1cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Dx 6/27/2016, ILC/IDC, Right, 2cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Surgery 9/21/2016 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/8/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/22/2017 Arimidex (anastrozole), Aromasin (exemestane) Surgery 12/12/2017 Reconstruction (right): DIEP flap
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Jul 11, 2018 04:59PM moth wrote:

My MO told me at the beginning that she guided her chemo decisions on several factors including:

Grade of tumor

size of tumor

hormone receptor status

lymphovascular invasion

positive/neg lymph nodes

age of patient

Any of these on their own might make her recommend, or at least consider a course of chemo. I was older than you and was prepped to fight for chemo if I got an intermediate score but that turned out to be unnecessary as I got reclassified as triple neg (& Oncotype score generated was through the roof...) We didn't even do Oncotype here in my province until a couple years ago so these were the items that went into the clinical decision making.

Given your age & Oncotype score, you're absolutely right that your MO should be discussing the relative benefits & risks of chemo with you.

Dx at 50; Left, IDC, 1.7 cm, Stage I, Grade 3, 0/5 nodes, very weakly ER+, being treated as TNBC Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast
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Jul 11, 2018 05:53PM - edited Aug 28, 2018 08:31PM by maiyen

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Jul 11, 2018 07:53PM Runrcrb wrote:

Chemo doesn't guarantee no distant recurrence. I thought of it as attacking anything floating around my systems. I had several positive lymph nodes. My oncotype indicated low probability of recurrence and without the lymph involvement, I would have skipped chemo. I had less chemo than someone with more lymph involvement or a higher grade (i didn't have the taxol that many have).

I recommend that you talk to your MO again with a goal to get an understanding of why she doesn't think chemo is necessary. For your peace of mind, I also suggest a second opinion. If the second one matches the first, then that will likely make you more confident. If it's split, you can go for a tie breaker or go with the chemo. Chemo is not a walk in the park, although i found radiation harder, and neither guarantees no recurrence. Nothing really does that.


Dx 6/27/2016, IDC, Right, 1cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Dx 6/27/2016, ILC/IDC, Right, 2cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Surgery 9/21/2016 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/8/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/22/2017 Arimidex (anastrozole), Aromasin (exemestane) Surgery 12/12/2017 Reconstruction (right): DIEP flap
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Jul 11, 2018 08:16PM moth wrote:

Runrcrb is right - there are no guarantees. This is a giant game of odds & you can do everything right & still end up on the wrong side, & vice versa.

But if you put in your stats into one of the calculators you can see how many people with similar dx are alive 5,10,15 years down the road & whether their death was due to cancer or other causes.... & how chemo & endocrine therapy can affect those probabilities. But bottom line is you can have a risk of less than 1% and still have something happen to you. I had extremely low risk of getting breast cancer in the first place...& yet here I am.

That said, when I looked at my cancer outcome probabilities, I knew that I wanted to shrink that probability bar to as little as possible so I'm throwing everything at it. (& also thus my constant harping about the studies showing exercise being the biggest lifestyle modification factor with one study saying risk of recurrence was reduced approx 40% )

http://www.lifemath.net/cancer/breastcancer/therap...

http://www.predict.nhs.uk/predict_v2.1/tool


Dx at 50; Left, IDC, 1.7 cm, Stage I, Grade 3, 0/5 nodes, very weakly ER+, being treated as TNBC Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast
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Jul 12, 2018 12:59PM - edited Aug 28, 2018 08:31PM by maiyen

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Jul 12, 2018 01:04PM pupmom wrote:

No, I was very relieved. Oncotype DX indicated I was more likely to die from chemo than cancer.

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, Right, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Jul 12, 2018 02:26PM gb2115 wrote:

I was worried when they said no chemo. I had a positive node and am young. But based on mammaprint results they didn't recommend it. I was relieved yes, but I do still worry that maybe we didn't do enough.

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.
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Jul 12, 2018 03:18PM TrailDweller wrote:

Thank you Moth for the links to the calculators, that was very helpful.


Dx 4/24/2018, IDC: Mucinous, Right, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 5/8/2018 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 6/21/2018 Arimidex (anastrozole) Radiation Therapy 7/18/2018 Whole-breast: Breast
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Jul 12, 2018 03:48PM Runrcrb wrote:

Maiyen you seem to be doing all the right things- tons of research and creating a list of questions for your doctors. Keep pushing until you feel good about the decisions being made. I barely understood the oncotype thing (and my printed report was in bad physical condition so it was hard to read anyway) and although i was 100% ER and PR+ and low likelihood of recurrence, the number of nodes put me into the benefit from chemo.

I struggled with the single vs double mastectomy and spent a lot of time on that research and decision. Once i made the decision i felt 100% better and at peace. This is why I think your continued conversations with MO will get you to peace with the final decision.


Dx 6/27/2016, IDC, Right, 1cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Dx 6/27/2016, ILC/IDC, Right, 2cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Surgery 9/21/2016 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/8/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/22/2017 Arimidex (anastrozole), Aromasin (exemestane) Surgery 12/12/2017 Reconstruction (right): DIEP flap
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Jul 12, 2018 05:05PM Prairiedog wrote:

Moth, thanks for the links to the calculators. My MO recommended letrozole for me, but I am very concerned about the cognitive effects of AI. Both of my parents had Alzheimer’s and I am determined to do everything I can to avoid that fate. The MO and I discussed the risk/benefits of the hormone therapy and she said it was up to me. According to the calculators, the improvement in reoccurrence rate is not large. That helps me to make my decision.
Dx 3/1999, LCIS/ILC, Left, 1cm, Stage IB, Grade 2, 0/14 nodes, ER+/PR+, HER2+ Chemotherapy 5/2/1999 AC Dx 4/11/2018, ILC, Right, 1cm, Stage IB, Grade 1, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 5/3/2018 Lumpectomy: Right Radiation Therapy 7/9/2018 Whole-breast: Breast Surgery
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Jul 12, 2018 05:20PM hapa wrote:

Keep in mind that chemo puts you at risk for other things, like heart failure and leukemia. The risks depend on your chemo regimen. So I'd research the risks of whatever chemo drugs you'd be getting, and unless chemo was going to reduce my risk of recurrence enough to offset those other risks, I wouldn't take it. Breast cancer isn't the only thing you need to worry about in the long run.

Dx 12/8/2017, IDC, Right, 3cm, Stage IIIA, Grade 3, ER+/PR+, HER2- (IHC) Hormonal Therapy 1/2/2018 Zoladex (goserelin) Hormonal Therapy 1/2/2018 Arimidex (anastrozole) Targeted Therapy 2/14/2018 Ibrance (palbociclib) Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/28/2018 Perjeta (pertuzumab) Targeted Therapy 3/28/2018 Herceptin (trastuzumab) Chemotherapy 3/28/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/22/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 10/22/2018 Whole-breast: Lymph nodes, Chest wall
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Jul 16, 2018 12:29PM - edited Aug 28, 2018 08:31PM by maiyen

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Aug 1, 2018 11:29AM MollyinTO wrote:

just had my lumpectomy and sentinal node biopsy yesterday. The treatment plan is for radiation and hormonal therapy but chemo will be determined following results from the pathology of the removed lump and nodes. Really hoping it won't be necessary!

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Aug 1, 2018 01:49PM carmstr835 wrote:

maiyen,

My MO also recommended no chemo. I did a 2nd opinion, that MO suggested chemo. I was much older than you at 61 but 2 positive lymph nodes a KI-67 of +20%. My MO agreed to do TC x4 but then my 2nd opinion came back (he redid all the pathology, surgical and biopsy), I was HER2+ and then my chemo was changed to TCHP x4 more, after 2 TC cycles. My MO did this reluctantly, he took my case to the tumor board who decided against his opinion to do the stronger chemo and add the herceptin and perjeta. My onca scores were 17 & 19 and my mammaprint was Luminal A low. Chemo was not hard for me, I believe it did make me look 10 years older in the year I did it, though. Just finish May 30th. My hair came back very frizzy and fine, but I believe the chemo did it's job. I don't plan to do the anti hormone therapy so my plan is to take every advantage I can that does not impair my cognitive abilities for the next 5-10 years. Someone mentioned exercise and that I believe is a very good deterrent to cancer as well as low sugar and low carbs. I also water fasted 5 days prior to chemo each time to lessen the chemo side effects and it is also a cancer deterrent. I now fast 7 days every 4 weeks.

Dx 3/1/2017, DCIS/IDC, Both breasts, 1cm, Stage IIB, Grade 2, 2/17 nodes, ER+/PR-, HER2+ (FISH) Hormonal Therapy 3/21/2017 Arimidex (anastrozole) Surgery 3/26/2017 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 5/17/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 6/26/2017 Herceptin (trastuzumab) Chemotherapy 6/27/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 6/27/2017 Perjeta (pertuzumab) Radiation Therapy 9/10/2017 Breast, Lymph nodes, Chest wall Surgery 7/9/2018 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 10/15/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Targeted Therapy Nerlynx
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Aug 3, 2018 10:49AM - edited Aug 28, 2018 08:31PM by maiyen

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Aug 7, 2018 03:52PM henry8 wrote:

I too have been told that i dont need chemotherapy. I was first told I was a DCIS then after surgery they found out it was IDC the tumor is small but the weird part is I am ER+and PR- her2 - stage 1a and grade 2 with onca 25. My doctor first said to do chemo but then got a second opinion they said no chemo because of Tailor x. Only problem is it mostly applies to er+and pr+ results. I really dont want to do the chemo but dont want to regreat not doing it down the road!!

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Aug 8, 2018 07:43PM - edited Aug 28, 2018 08:31PM by maiyen

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Aug 8, 2018 08:15PM moth wrote:

maiyen - I've not heard that, and in fact the calculators at Predict and LifeMath both indicate that the benefits of chemo can persist beyond 5 years.

Dx at 50; Left, IDC, 1.7 cm, Stage I, Grade 3, 0/5 nodes, very weakly ER+, being treated as TNBC Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast
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Aug 9, 2018 12:13AM Meow13 wrote:

I can see being freaked out at getting diagnosed. I can't see getting freaked out for not getting a chemo recommendation. Chemo is not a miracle cure or an insurance policy. You can kill indiscriminately a bunch of fast growing cells but it is a far cry from getting everything. You got a fast growing cancer that can't be treated with hormone or targeted therapy, heck yes get chemo. Knock as much as you can down and pray for no permanent side effects. Make no mistake we need better treatment.

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Aug 26, 2018 09:08PM BT39 wrote:

Hi, I've been told I likely won't need chemo but endocrine therapy. I had a dmx August 15 for widespread DCIS in the left and then found it had grown into a tiny invasive tumor (4mm). Tiny but mighty! Clear node and margins but a lot of aggressive characteristics. I just got that post surgical path report Thursday so will be figuring out next steps over the next few weeks. It does feel weird though, I know what you mean -- it's hard to find the right balance between doing enough (we hope) and not too much (what might not be necessary), and then feeling confident and at peace with those decisions and outcomes! Sending lots of good thoughts your way.

Dx 6/29/2018, DCIS/IDC, Left, <1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/14/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right
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Aug 27, 2018 01:20PM - edited Aug 28, 2018 08:31PM by maiyen

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Aug 28, 2018 10:54AM JoE777 wrote:

hi maiyan, when my doctor was walking me through my treatment choices he prefaced the discussion with "not over treating". The harsh reality is that there are no guarantees regardless of treatment choices. Once a cancer battle begins it's a lifetime of vigilance balanced with the the gift of today. I agree with almost all that has been shared on this thread. The second reality is that having choices is a double edged sword. We all try to outsmart the disease as we gather as much info as possible but everyone on this site will tell you that every person's diagnosis is unique to them. The bottom line is that doctors are bound to tell you if the efficacy of treatment outweighs the risks or are the risks of treatment will catch up with you down the road. Make sure your doctor answers all the questions that have answers. Some do not. If you don't trust your doctor with good reason find another because you'll spend large chunks of time with your treatment team. I wish I could sweep your fears away but fear will have less power over you as you begin the treatment.Hugs and peace to you.
Dx 2/2012, IDC, Left, 2cm, Stage IIA, metastasized to bone, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 4/3/2012 Lumpectomy: Left; Lymph node removal: Sentinel Dx 2/2018, IDC, Stage IV, metastasized to bone/lungs, Grade 1, ER+/PR+, HER2- Targeted Therapy Kisqali Hormonal Therapy Femara (letrozole) Chemotherapy Other Radiation Therapy External: Bone Hormonal Therapy Aromasin (exemestane), Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes
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Aug 28, 2018 12:32PM Meow13 wrote:

I have noticed emotional responses when it comes to cancer treatment. I think there exists an attitude that the harsher and more drastic the treatment the better the outcome will be. People seem to want you to do anything you can to fight cancer, overtreatment while it is still early stage. Especially, if you are fairly young and in overall good shape. Looking for the added insurance policy solely based on statistics. Personally, I don't buy into this.

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