To chemo or not to chemo?

i was 4of5 lymph nodes. Also low risk of recurrence per oncotype/mammaprint. The nodes pushed me to chemo. I don’t think I would have skipped it if given the choice.

I had four rounds of TC. I lost my hair but otherwise had minimal side effects. I can’t encourage you one way or another as you need to be at peace but don’t let fear of losing your hair be the deciding factor. There’s a thread from last month on wigs if you want to see my before during and after headshots

DTR - I wish I could help you. I had Oncotype 17 and my surgeon said I don't need chemo so I didn't do it. I am currently doing radiation and will do hormonal therapy. I am 54 and did not have any positive lymph nodes. With your low Oncotype 16 and very low Mammaprint, you may not benefit from chemo. Did you get a copy of the full reports? You should get them and maybe send it to a specialist for a third opinion b/c information on these tests are changing so much recently. I think the bottom line is will the chemo do anything to your cancer type that the hormonal therapy can't do? If so, by how much?

dtr- I hear you, I had to make the same decision with conflicting opinions from my docs. My Oncotype was 14, my MO still wanted to do chemo, second opinion said no chemo. I opted for no chemo. The part for me is that you can throw everything at Cancer, and it can still come back.

Someone on a similar thread just said if it was just surgery, rads, Chemo, meds and then you’re cured, then we’d all do chemo without a second thought.

My Oncotype report actually said a greater chance of death in 5 years if I did chemo. Chemo is doable, but no joke. Ask to see your report.

I’m not a doctor, but if you recur twenty years from now, it won’t be because you didn’t do chemo. It would be because those cells were dormant while you were going through it and chemo only kills fast growing cells. Cancer is a sneaky MF like that

Wow DTR, that is a great lifeline regarding Mammaprint. Even though it is totally after the fact for me, I would be very interested to see what she says about your case. Thank you for sharing - it is so very much appreciated 💐

Ladies, just looking "to chemo or not to chemo?" My Onc recommended the Prosigna test to test the cells of the tumor and results came back with a high score for recurrence. I am scared of chemo for so many reasons. So I am leaning towards Rads and HRT. I must decide in the next week or so as I am already beyond time any treatments should be started. Just wondering how many ladies out there with same diagnosis, with high recurrence rates on the Oncotype DX or Prosigna tests chose not to do chemo when it is strongly recommended. How many years out are you now with no recurrence? Additional info about me - I am 58yo, postmenopausal, no family history of BC.

Dx 2/15/18, IDC, Right, 1.5cm, Stage IA, Grade 3, ER+/PR+, HER2-

Surgery 4/5/2018 Lumpectomy: Right; Lymph node removal: 1 removed -negative; Prosigna score 78

Hormonal Therapy -waiting for suggestions after chemo/rads or rads (still undecided)

Radiation Therapy - met with RO - suggested treatment is 16 with 4 boosts

Chemo - still on the fence and running out of time

hi to you- understand your dilemma- I went thru 4 rounds tc last summer==stage2-----2.3cm--2positive nodes--grade 3--oncotype--45- that and the positivie nodes made it a no brainer for me on needing chemo--it really wasnt bad--used Penguin Cold caps with good results-saved 75-80 percent hair and no one could tell..never had any neuropathy,nausea,,just 1 day diarrhea each round,mild fatiigue and temporary loss of energy.

My concern for you is that you are young with decades ahead to protect yourself and you have a positive node which as you know means your bad cells were on the move. I am in my late 60's and if it comes back in 10 years ,they still keep you going for some time - I would be over 80!

the man thing is you are doing is do your research- it is still a crap shoot and you must be at peace with your decision and any consequence. Please dont let your potential loss of hair be the deciding factor- with TC the cold capping has an excellent success rate if done properly-it is the adriamycin that is more damaging to hair.

Let us know what you decide,C

Surella, have you looked at the general stats on Predict http://www.predict.nhs.uk/predict_v2.0.html

or _{LifeMath http://www.lifemath.net/cancer/breastcancer/therap...}

_{While we never know what side of the risk bars we'll end up on, knowing how big the slice is, is important. The majority of people don't recur.}

_{But on the flip side, "Although more than 90% of patients with breast cancer have early stage disease at diagnosis, about 25% will eventually die of distant metastasis." http://www.cmaj.ca/content/189/7/E268}

<sub>Each of us needs to make a decision that we can be at peace with. I personally wanted to know I threw everything I could at it. I'm otherwise healthy & you know what, chemo is just something to get through & it's been ok - even though I haven't had the easiest time during parts of it, it's all been manageable & I'm so glad to have access to this world class treatment.

Best wishes,</sub>

I also was advised originally there would be very little benefit using chemo. I believe my MO used the pathology from my surgery and at that time I had already been taking arimidex and I believe that would skew the Onca scores. My biopsy pathology came back as Her2+ and 2/15 positive lymph nodes with extra nodal extension. One lymph node cancer grew 2.6 cm in just 9 days and burst after the biopsy. I was also Progestrone negative on 1 tumor. And slightly positive on the other. However, I was strongly estrogen positive for both breasts. I do not believe Onca score or Mammaprint would be valid for me, but my MO send it in anyways. My right breast tumor was scored as 19 and my left breast was 17. The Mammaprint came back as low. He stuck with his original decision not to do chemo the benefit he thought was still not worth it. My 2nd opinion MO adamantly suggested chemo. He suggested 2 different regimes and my MO reluctantly agreed with 4 cycles of TC. Then the pathology was redone by the 2nd opinion MO and that came back again as Her2+ he was very emphatic I get herceptin for a full year. My chemo was switched to TCHP 4 more cycles. So I had 2 TC and 4 TCHP. I had zero issues with chemo except lost most of my hair even though I did the dignicap. I had 90% of my hair until the final chemo when my nurse did not fit my cap on properly. I could not get her to listen to me. And 2 weeks later I lost most of my hair. That was the worst part. I paid $2700 to keep my hair and because of one chemo nurse, I lost it anyways.

I feel I have done everything I can to keep this disease under control. I also did 30 tomography radiation treatments. Those are and still are the worst part of my treatment. Still even after 8 months I am still in severe pain and tightening of my fascia. I have been told I will have permanent lung damage from the radiation. Currently I have radiation pneumonitis and inflammation that will eventually become scar tissue and loss of lung function. I plan to have reconstruction surgery in a few weeks. And hopefully by cutting up the damaged scared radiated tissue, my chest and arm pain will be alleviated.

I am not taking the arimidex or tamoxifen, or an of the hormone blocking drugs. I have side effects and can't take them. So I think I will be taking the new drug nerlynx after my surgery.

My suggestion is to get a 2nd and 3rd opinion about everything. We don't get a "do over" here.

carmstr - I am so sorry for what you went through. I hope you reported the nurse. It is unbelievable what she did. Good luck on your surgery and I hope the new med doesn't give you SE. We will be praying for you.

carmstr- I have a similar experience with rads. I wanted to give you some hope. I don’t know if they are treating you with steroids for the pneumonitis; I assume they are? I was on high dose steroids for months, and I thought it was also going to have lung problems forever. Whatever wasn’t healed by the steroids did turn to scar tissue, but I can’t really notice any shortness of breath, even with exercise. My pulmonologist told me emphatically, “You will get better.”

Also, that tightness and pain-have you tried PT yet? That is the only thing that helped me. Especially if you can find a lymphedema PT, even if you don’t have it. They are knowledgeable about what rads does to the muscle and fascia.

I’m sorry if you already went this route, I just wanted to let you know what has helped me in case it could help you.

DTR - thank you for sharing that valuable information you received from the Mammaprint creator...very much appreciated!😊

Carmstr835 - I really feel for you. Nobody should have to go through unnecessary stress...this diagnosis is enough of a challenge all on its own. Hope everything settles down for you soon 😘

DTR - Thank you so much for reporting back to us. I am glad that I based my treatment based on Oncotype DX and on the biology of the tumor. I did not understand your information about the nodes. Can you explain that part again?

1 node positive, is not negative of course, but one is recognizing more and more that up to 3 positive nodes is leaning for risk of recurrence more towards negative, certainly if only 1 is positive.

Kaywrite. Thank you for dropping in and the informative links. I willl give Johns Hopkins a try with my next questions