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Topic: Chemo or not? - Second breast cancer - Oncotype Result 24

Forum: Second or Third Breast Cancer — For those confronting a new primary diagnosis or undergoing treatment.

Posted on: Nov 10, 2017 02:06PM

Leodreamer wrote:

Greetings Everyone: What a wonderful group of very supportive people here! Believe it or not, today is the first time I've sought out a "community" (breast cancer centred or otherwise!) to share my current journey. Just some background: My first experience with breast cancer was July, 2007. The cancer was ER+.in my left breast.and I'm embarrassed to say that's all I know about it! I didn't know what questions to ask, I just went along with what I was told to do...though i did opt for for the lumpectomy rather than mastectomy at the time and a course of 6 weeks of radiation. I was assured that the cancer had all been removed (it was very small...3 cm) and we were all confident it wouldn't return. I did start on Tamoxifen but it and I were not a good fit...I experienced extreme fatigue, pain in my joints and severe headaches. I was a college instructor with a very busy schedule and I was feeling "wiped out" at the end of every day and so after with consultation with my health team it was agreed that I could stop taking Tmx as it was felt that the risks of a recurrence were slim.

Real time: Thanks to you all that have continued reading this far! Now I am at decision time and feeling a bit overwhelmed as everything has happened so fast this time. Mammogram, Sept. 6th, Biopsy Sept. 8th and received diagnosis Sept. 13th. Then followed a couple of weeks filled with appointments, tests, scans, lab work etc. with my surgery date set for October 3rd, 2017. I had a full mastectomy this time and have opted for reconstruction and have had two procedures so far with another four scheduled to the end of December and this time I am on Letrozole instead of Tamoxifen. When I had a follow-up appointment with my oncologist Oct. 19th, I found out that: my cancer was a second cancer not a recurrence, it was ER+, Stage II and Grade 2 and again only about 4 cm in size. (See, I knew to ask more questions this time! **grin**) When the subject of whether chemo would be advisable or not the oncologist suggested we send a sample of my cancer to a lab to get an idea of whether my cancer type fell into the low, medium or high risk range for a recurrence. So, as noted in the subject line,the results have come back with a result of 24...not low...but not in the high risk range (which is 30 and above) but in the intermediate risk range. When my oncologist called to give me the result I got a sense that he would be recommending chemo (I have an appointment Dec. 8th to discuss next stage treatment). However, on speaking to my family doctor he thinks that perhaps the side effects of chemo are too high for the level of risk of the cancer returning. Most of my family members though, think I should go forward with the chemo with a..."do all that you can now...so you have no regrets later" sentiment.. I'm not afraid of most of the side effects (other than hair loss which is sort of an issue for me...even if I'm 68!) but I've been through major back surgery, lost an eye due to an accident, have a pacemaker, had shoulder surgery and as mentioned earlier have survived a previous cancer diagnosis.

I am by nature, a very positive person but this situation...having to say yay or nay to chemo is flummoxing for me. Sorry for my being so.long-winded (I think it is a side effect of being a college instructor for almost 30 years! **smile** Thanks everyone and your feedback would be kindly appreciated.

Anita


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Nov 10, 2017 02:34PM KBeee wrote:

Sorry you find yourself back here. Your doctor can order the mammaprint, which gives high or low risk, and no intermediate score. You also could get a second opinion and/or third one. 4 cm is a pretty good size tumor, but you also have to consider your other health issues and determine the risk/benefit to you.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Nov 13, 2017 03:29PM Leodreamer wrote:

Thanks KBeee for your input...and I agree that having a low or high is better than this intermediate score. I'm seeing my GP (who's known me for over 30 years) on Wednesday with my husband and discuss my treatment plan and the risk/benefits. Tomorrow (Tuesday) I'm scheduled for a PET Scan to check out those spots on the lung (which I'm confident are what the medical profession call "incidentals"...sheesh!) Then I get the scan to checkout the adrenal gland on Nov. 30th and again I'm hoping it is bly another "incidental" and finally as noted in my original post, I meet again with my oncologist on Dec. 8th. Meanwhile i'm busy comforting family and friends that everything is going to be fine and not to worry....just have to remember to tell myself that!

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Nov 20, 2017 07:38AM Blair2 wrote:

Leodreamer - I’m 68 as well. I also had a bypass three years ago that has concerned me as to how well chemo and radiation will effect my overall future health. Having a high intermediate Oncotype score of 27 made me decide to go through chemo - but very reluctantly. I start the 30th. My oncologist is very young and I wonder with her inexperience if she truly understands how older bodies react to such treatment, but then I have to trust her. I wonder about statistics and have found little info. My breast surgeon could have cared less, had my facts all wrong with heart condition, so that was annoying, but I’m through with her at least. My cardiologist just told me not to worry- I was in good hands, but yes, there were risks. I lived with uncertainty for two months now and I’m completely frazzled with fear because of all that’s been told to me. The women here on the blogs have helped a lot to keep my fears down, but until I get through the worst of it - then maybe I can relax. Maybe - that is if these treatments of chemo and radiation don’t do permanent damage.

I can say, no doctor has told me that - but we are at their mercy. You wonder if they really care or not with their hands full of patients. My bs didn’t care, she acted like my case was no big deal and put on a flighty act that amazed me that any doctor could act like that. All she worried about was how much I was worried, and felt I was being wrong feeling that way! She even suggested a therapist! That was the last straw with me and I told her no therapist, no doctor (including her) was going to make me not worry. (She only made it worse) We are victims of a life threatening disease and we are crazy for worrying so much? Well, I decided she was a doctor that was sick of hearing sad patients complain and probably tired of her profession. In contrast, most of all the techs and nurses have been supportive.

Anyway, with so many appointments, so many ifs and buts, so much aggravating wait for results - it is enough to drive anyone crazy. My advise is to write down as many questions as you can and try to get them answered when you talk to your oncologist. I’ll let you know how I muddle through chemo. I’m vain, and fear my hair loss. I’ll cry for the first time when it’s gone. My breasts aren’t very pretty, but I’m in tact, they aren’t important to me at this age - the hair will grow back I tell myself. I’ll get it behind me and hope again these doctors know what they are doing. I just want you to realize that you’re not alone! Let us know how it goes. Best of luck

Oncotype DX score 27 Dx 9/6/2017, IDC, Left, 2cm, Stage IA, Grade 3, 0/5 nodes, ER+/PR+, HER2- (IHC) Surgery 10/12/2017 Lumpectomy: Left Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Hormonal Therapy
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Nov 20, 2017 11:58AM Luckynumber47 wrote:

Isn't there another part to the Oncotype test - where it shows the % of benefit you get from doing chemo. My % was really low and I didn't feel the risk outweighed benefits for me. In fact, the bar graph on the back page showed a negative benefit, so I felt good skipping chemo (my number was 18)

Since you are ER+ I expect you'll be offered an AI and they are tremendously effective at controlling any cancer cells that may have strayed, in many cases they're better than chemo.

I also have heard good things about the Mammaprint - always helpful to have all the information possible when making such an important decision.

Wishing you all the best.

My avatar is a Blue Footed Boobie. Cracked me up. ATM variant, mom died at 33 from BC Dx 2/15/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 3/16/2016, DCIS, Right, <1cm, Stage 0, Grade 3, 0/1 nodes, ER-/PR- Surgery 4/6/2016 Mastectomy: Left, Right Hormonal Therapy 5/16/2016 Femara (letrozole)
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Nov 20, 2017 03:31PM - edited Nov 20, 2017 03:33PM by lrwells50

Leodreamer,

My OncotypeDX was 24, and my chance of recurrence with 5 years of tamoxifen was 16%. That sounded pretty high to me. Chemo reduced the chance to 6-10% according to the onco. My breast surgeon had told me if anyone wanted me to do chemo to call him before I did it. He got me an appointment for a second opinion. That oncologist said with my size tumor, he wouldn't have done an OncotypeDx, but since I had one, and the score was 24, if it was his wife he would recommend chemo.

My pre-surgery biopsy was invasive ducal carcinoma, but my post-surgical labs were invasive lobular carcinoma, with ductal features. I know that lobular isn't supposed to respond as well to chemo as ductal, but all of the docs had been expecting a low OncotypeDx score, and the 24 kind of freaked me out.

I don't have any huge health issues other than a hiatal hernia and being overweight, and the 2nd opinion oncologist said he didn't think I'd have any trouble with his recommendation of 4 treatments of Taxotere and Cytoxin every three weeks, and he was right. That's not to say I don't think I was incredibly lucky, but not everyone has an awful time. Because I never throw up, not once in the last 45 years, that's what I was most concerned about, but I wasn't nauseated at all. I had some of the symptoms, weird tastes the week after chemo, hair loss, swelling in my legs and feet after the third treatment, a persistent cough that took FOREVER to go away, but all relatively minor. Because Taxotere can cause permanent hair loss, that was my biggest worry, but I'm 17 weeks post final chemo, and my hair is coming in pretty fast, and I think by Christmas I'll be able to ditch the wig.

You obviously have some more serious health issues than I do, so I do think you have to consider the chemo side effects, but talk to all of your doctors, and get a second opinion from another oncologist if you think it would put your fears at rest.

Good luck with your decision


Edit—

I meant to say I was 66 at the time of my diagnosis

OncotypeDx 24, I think because although I was 100% ER+, I was very weakly PR+ . BARD1 mutation, mother had breast cancer twice. Dx 12/5/2016, ILC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 3/8/2017 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 5/19/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Arimidex (anastrozole)
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Nov 20, 2017 05:17PM Leodreamer wrote:

Hi Blair2...thanks for your input. My goodness...I do understand about the "busyness" of appointments, tests, scans and more appointments. It's like a "hurry up and wait" scenario! And I understand the concern about the hair loss thingy as I must admit that I too am a bit vain and my appearance is important to me too! I know that for some, losing one's hair is not as big a deal as perhaps for others but I don't think there is a document that states we should feel this way, or that way or that we shouldn't be feeling this or we shouldn't be feeling that. The thing is, we are each of us unique and I know now having spoken to a number of people and read a lot of comments that for each of us this is not a journey that comes with a map of how we travel from here to wellness and our future. And yes, please, let me know how you "muddle through" and remember you are the one that is experiencing this yucky disease so don't let others negativity affect you too much. Take heart in that here you have a wonderful and support group of people who have, are or will be going through what you have and will be going through. Sending positive thoughts and energies your way! And thanks for reminding me that I am not alone! Cheers! Anita

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Nov 20, 2017 05:32PM Leodreamer wrote:

Hi LuckNumber47: Thanks for your comments. I did not know about the mamaprint and what it's purpose was until I started reading the comments by other writers. When I next see my oncologist(Dec. 8th) that will be on my list of questions. I also wasn't aware that there was another part to the oncotype testing where it shows the % of benefit you get from doing chemo. So that's another aspect I will be talking to my oncologist about! So far, my GP and my family are encouraging me to go through with the chemo but I'm not sure of what's next until I talk with my oncologist on Dec. 8th. Currently I am waiting results from a PET scan to rule out the "spots" on my lungs as being incidentals and also have a CT Scan on Nov. 30th of my adrenal gland to also rule out any issues there. So, as I noted in an earlier posting, it is a hurry up, get tested and wait for results. Until then, I'm trying to worry about the results of my current tests, I should mention that I am on Letrozole this time instead of Tamoxifen but I seem to be having the same issues, such as fatigue and headaches. I'm hoping that my body will get used to this drug sooner than it did with the Tmxfn. Thanks again for the information as well as for your good wishes! Cheers!

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Nov 20, 2017 05:40PM barcelonagirl wrote:

Hi Leodreamer! I too am sorry that you are back in the throes of another diagnosis. Glad, however, to hear it is a new primary! When I was diagnosed 5 years ago, my smaller 1.5 cm ER+ HER2- no nodes came back Oncotype 21. They then ran a MammaPrint (I was in the PROMIS Trial which took intermediate ODX and ran them through the MammaPrint test). I came back High Risk and did the chemo (even tho my doctors weren't thinking I would come back High.). The PROMIS trial results came out and showed that Oncotype Recurrence scores between 18-30 resulted in Low Risk and High Risk results for each recurrence score. Thus a low intermediate doesn't mean you're Low Risk of recurrence and a higher intermediate doesn't mean you're High Risk and will show benefit to chemotherapy. I was so impressed by this test that I am now working for the company that makes the MP test! Can you ask your doctor about running MammaPrint,? It could help you and your doctor more easily make that decision!

Sending prayers and good karma to you!! It's such a difficult time, when you're gathering your information and want to take control of your situation!!

Breast Cancer Survivor/ MammaPrint user / Agendia Patient Advocate Dx 8/2012, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR-, HER2-
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Nov 20, 2017 05:49PM - edited Nov 20, 2017 06:04PM by Leodreamer

Hi Irwells50: Thanks for sharing your comments with me and your journey. I have to admit that initially the thought of chemo wasn't something that I considered that I would have to be thinking about. When it was decided that a mastectomy was the best route to go this time (with reconstruction procedures ongoing for the next few months) I had come to terms with it all...sort of. After surgery I met with my oncologist and he informed me that this was a 2nd cancer and not a recurrence. Because of this my oncologist said that, with my permission, he would like to send a sample of my cancer for oncotyping. He said that he expected the result to come back in the low range but wanted to be sure before we discussed what my further treatment would be. (I am currently on Letrozole rather than Tamoxifen due to my negative experience with the latter during my last cancer treatment). When he phoned me at home with the results of 24 he admitted that he was surprised and though initially he was not too concerned about the spots found on my lungs and adrenal gland he now wanted more scans done. (I had a PET scan on Nov. 15th and have a CT Scan scheduled for Nov. 30). I have an appointment with my oncologist for Dec. 8th and was told that in the meantime I should discuss with my GP and family and get their input and perhaps that would help guide me in my decision. I was of the impression that my oncologist was on the side of doing the chemo. So, I'll let everyone know once a decision has been made...one way or another. Of course, results of my scans could play a role in that! Just trying to think positively for now and again...thanks for your taking the time to share your experience. Cheers! Anita

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Nov 20, 2017 06:00PM Blair2 wrote:

You're welcome Anita. I worry more about my heart. However, I'm going to assume that these drugs aren't as bad as some of the others - especially for the heart. They will make sure that they are giving you the right ones with your heart condition, and you will just have to dish out the benefits vs. the side affects with your doctor. My oncologist said that mine was considered on the the mild side. She said "we give these drugs to 90 year old women". Well, if I were 90, I don't think I'd bother, but I didn't tell her that. I just thought it was a bit funny. I don't know what she meant by "mild side". Maybe that's why I hear a lot of women who have been on these drugs haven't had severe or bad side affects. However, they are still strong drugs and everyone will react differently. I'm so glad I found someone the exact same age! I was getting depressed hearing all the young mothers complain (yet some weren't complaining much) - they are more at risk for recurrence because of their many years of life expectancy. Age makes a big difference because our bodies slow down and at least their bodies are strong to put up with drugs more than us. So it makes it scary for us older ones - especially with heart conditions - oh my.

Luckynumber - you ARE lucky. Oncotype DX 18 is still low recurrence and you didn't need chemo. Yea! My benefit is 50% with chemo. Without, I would have an 18% of recurrence doing radiation and hormone therapy for 5 years. With chemo, 8-10% recurrence rate. At 27 score, I was high intermediate. Just didn't give me much choice.

Irswell50 - you too had to make a tough decision with a "should I, shouldn't I" score of 24, but you protected yourself. Be glad the worst is over! Nice to hear you didn't suffer too much too. You are also lucky you didn't have radiation. That's what I thought I would only need (scary enough), and was shocked when the Oncotype score came back high.

Oncotype DX score 27 Dx 9/6/2017, IDC, Left, 2cm, Stage IA, Grade 3, 0/5 nodes, ER+/PR+, HER2- (IHC) Surgery 10/12/2017 Lumpectomy: Left Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Hormonal Therapy

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