Triple negative and wondering about chemo...

I, too, had a 3mm tumor (plus numerous microinvasions) when the final pathology was done after a MX for what was thought to be only DCIS. I am triple negative. Unlike you, however, I have no family history and was over 50 at diagnosis. It was felt my chance of being BRCA positive was so low that testing was not recommended. I was treated at what many consider to be the number 1 or 2 comprehensive cancer center in the nation.



The protocol is no chemo for a tumor under 6mm and my MO said no chemo. Like you I was fearful about this because I wanted to smash this thing at the outset. When my MO took my case to the weekly case review, the oncology staff was split with some MOs saying that due to TN and multiple microinvasions, I should be offered a series of CMF treatments, although none said I had to do chemo -- only that it should be offered to me. Other MOs said absolutely no on chemo, with one even saying that treating me with chemo would only be treating my mind by making me feel less fearful.



At this point I sought out second opinions. I saw an MO whom I know to be very aggressive with adjuvant therapy when he thinks it is necessary, and he said no to chemo and that he would make the same recommendation for his wife, daughter, etc. He said the benefits were too small for the side effects. He was most concerned about chemo brain.



I saw one additional MO -- a world famous breast MO in Europe. He said I did not need chemo but he too was willing to do CMF as extra insurance. He said for TN he lowers the threshold. He says 5mm is a must do for chemo and at 4mm he highly recommends it. So, according to him, I was 1mm away from needing chemo.



I tell you all this because at 3 mm and triple megative we are in a real gray area. Since no doctor said I needed to do chemo, I ultimately decided not to do it, which my primary MO says was "absolutely the right decision". The decision was agonizing for me, however.



For you, I think it would be wise to get a couple of additional opinions. Every case is different and your young age, family history and BRCA status may cause some MOs to recommend chemo despite the tiny 3 mm tumor.



I wish you the very best as you consider your options.

Andrea, I am 68, have had surgery and started chemo 10 days ago and I have triple negative breast cancer.The tumor was only 6mm and my surgeon said I did not need chemo. From all I read, and I read tons on the disease, every single one said that no matter what the size of the tumor, we need chemo. I am only having 4 treatments of taxotere/cytoxan three weeks apart. They started with an intermediate dose and will increase the strength with each successive one. I went to an oncologist on my own and talked to him. He said that if I were his own mother, he would not tell me to not do chemo because if I had a recurrence in the next year or two, which is typical with TNBC, the I would say that I wished I had had chemo and he would agree. He sent me to a specialist in Indianapolis, Indiana, who called him and told him what she and her colleagues recommended. He said that after thinking about it, he agreed with us because there is no 5-year medication for us to take like with positive BC. I will have radiation after the chemo ends on Nov. 4. I think we have to stand up and fight for what we feel is right for us. There were several reasons I wanted chemo. First, all articles said chemo and radiation are all we have to fight it and if it comes back, it is typically resistent to chemo. Second, When the surgeon removed my lymph nodes, he reported that he only removed two, the sentinel and the next one, but pathology said the tissue had no nodes; it was only adepose tissue. My question was then: If you didn't find my nodes (they said they were very deep and if they accessed them, it would leave my whole side numb down to my wist) than how do you know cancer isn't in the nodes no one saw? The MO said, "We don't." Third: My tumor was the most aggressive: 9 on the Nottingham scale and grade 3. It was invasive ductal carcinoma when found by the mammogram, so how long before we found it was it invasive and did it have a chance to get in my bloodstream, even though the margins were clear at surgery. The MO said yes, it could have gotten into the blood stream.So, after all is said and done, my medical oncologist agreed that no matter what the size of the tumor, if it is TNBC, YOU NEED AT LEAST SOME CHEMO. My chemo is said to be intermediate grade, which is not the weakest and not the strongest. I had a few side effects, but nothing uncontrolable. I hope this helps a little. God bless you honey. I will pray that you will be able to make the right decision for you. Maybe change doctors. If you are a believing person, pray for God to lead you to the right person.

Every MO I consulted said that a TN tumor of 6mm or more needs chemo. No exceptions. However, 3mm is a different story. Such a tumor is only 1/2 the size where chemo is mandatory. Additionally, no MO offered or even considered giving me the more dangerous taxanes that can cause serious long term side effects. The most they would consider was CMF. My breast surgeon was against chemo reminding me it can cause leukemia. A second breast surgeon also told me no chemo. Both my primary MO and a second MO said they are finding more and more that chemo brain is a real and troubling long term side effect and that as a professional woman needing sharp and logical thinking, I should not do chemo. My point is that 3mm really is a grey area for chemo, whereas 6mm is not.



I sought out the best experts I could find on both sides of the Atlantic. I am at peace with my decision. I did, however, change my lifestyle. I reduced my fat, sugar and dairy intake and started exercising regularly. I have lost 60 pounds and now have a normal BMI. Research indicates these lifestyle changes will help reduce the risk of recurrence. And with no negative side effects.

Hi,



The PM was sent to sharonannebaker. Thank you.