Stage II w/Lymph Node Involvement
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I also did not have the test, and my onc also said chemo regardless because of the node... BRAC neg also.0
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My onc said he's not a big fan of the oncotype test. And he asked me if the test results would change my decision to be aggressive and do chemo. I told hiim no; even if the test said chemo would give me only a 2% benefit, I wanted that 2%.
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Well, I am meeting with my onc today for the first time. There is a tiny part of me that hopes I will not need chemo, even though that is likely what I will do, regardless of the oncotype test. My insurance also was not going to pay for it with 1 node positive, but my BS called them and talked to them and told them that it has been shown to be effective to tell whether it would be helpful in cases where there are a small number of nodes involved. I should have the results back already, but hopefully the onc will have today.
I was talking wtih a girl I know (more than casual acquaintance but less than a friend, if that makes sense) who was diagnosed 1/20 and had a lumpectomy on 2/2. She will face rads for sure. Her tumor was 1.3 with no node involvement, she is 44 with no family history. She is really struggling with the decision to do chemo. Her onc presented "chemo light" it as a choice and she is getting a second opinion and waiting on oncotype test results. It was interesting because she asked me what I would choose if it comes back in the grey area. I told her I'd pick chemo. I want to do everything possible to increase my odds as much as possible.
I'm anxious about my appt. Have PS right after that then BS in the morning. Oh yes, and the dentist tomorrow afternoon, which has really lost its power to give me any anxiety at this point
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Barbara--Hope your appointment goes well. I had one node positive and my Doc suggested chemo. My Doc talked me through the decision and to be honest, I knew as soon as I heard that the node was positive--I would get chemo. In Canada you don't seem to get that oncotype testing so most people that I have met with one node positive--get chemo. So different everywhere. Take care, Rachel (p.s. love your comment about the dentist--so very true--I used to hate going to the dentist but now--walk in the park!)
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Barbara - I have been following this thread and the other thread (nodes - no chemo) in prep for my appointment which is tomorrow. My onco score was low (my BS went to bat against the insurance company as well) and had me leaning towards the no chemo but after reading the many posts, the pendulum of anxiety is swinging the other way. I'll be thinking of you today ... let us now how it goes.
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well, I saw the onc yesterday. I liked him and his nurse, very nice. My oncotype score is 17, so on the high side of low, almost at teh intermediate range crossover which is 20. Unfortunately, he said most of the studies they have done are either on post-meno, older women, or not enough women (300) to make the oncotype extremely relevant. He said in the past, the standard of care was node positive = chemo, period. Now it is a little more grey. He recommended 4 rounds of taxotere and cytoxan then follow up wtih tamoxifen. In his words, the tamoxifen will do the "heavy lifting", the chemo is more for clean up/peace of mind. He said if I was his family member he'd want me to do it. My breast surgeon agreed with him. I think I'm going to do it. My fear of potential recurrence is greater than my fear of the side effects. Although I know it can still recur, if I don't do chemo and it recurs I don't know if I could handle knowing I didn't do everything I could to increase my odds.
So, port or no port? That is a question. With this treatment I will go in, have chemo one day, then go back in 21 days for next round and be done in 12 weeks. I'm not very "veiny". The nurse at the BS said no one ever regrets getting a port placed. The biggest downside I see is that it is more surgery that I don't want right now while recuperating and the scar. Any thoughts or opinions on this?
Thanks for all your support!
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Barbara---Glad to hear that you had good visit with your Doc. I did Taxotere as part of my FEC-T regime. It is completely doable! With regards to port/no port...I had 6 treatments 3 weeks apart and did not get a port. I don't have great veins so I won't lie, the first treatment was a pain but once they found the one nurse who could get the vein--it worked fine after. It probably isn't as easy as a port but my Doc said to give it a try and then see. After the first one, I considered it but the Nurse said they could handle my veins...by the end it was a challenge but got through!
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SuperSally--So glad you like your onc...that is so important.
I did 6 treatments of T/C every 3 weeks and didn't use a port. If you can, you make a stop in the treatment center of where you will be getting treatment and ask the nurses there if they think you need a port...
I had no issues with them finding a vein unless my arm was cold...they are tricks to bring the veins up to make it easier.
Good luck!
Tori
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Supersally: I'm a wimp about getting stuck, so I opted for a port. Plus, I had lymph nodes taken out on one side and only have one "good" arm and didn't want to risk screwing up those veins. I loved my port. The surgery was very easy (for me), in and out in about 3 hours. It was sore a few days, but no real pain. Yes, there is a scar there, but you wouldn't notice because you'd be looking at all my other scars (ha, ha, bad joke). You can put some lidocaine cream on your port an hour before you are stuck and you never feel a thing.
It's an individual decision, so do what's best for you.
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I have a question about the oncotype test. How many of you guys had it done? My cancer is Stage 2 now(.0009 in the SN) and Grade 1. Appt with oncologist on March 10. She is the one who ordered the oncotype test. Pretty sure I will do chemo. My BS says she is not sure how much chemo I should have at this point so she ordered the test. I asked the oncotype people how they tabulate the recurrence score and she said the biology of the cancer, whether you are hormone recp positive and node involvement. They only test for Stages 1 and II cancers. It is a very expensive test but fortunately my insurance will pay for it. Nervous about the score because I am more afraid of recurrence than I am of the cancer.
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And I have an oncotype question too. What does it measure? Chance of recurrence or how likely is your particular cancer to respond to chemo? That confuses me. I'm not sure what part the test plays in treatment choices.
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LadyinBama...from what I understand the test does both. Based on the biology of your cancer they can determine what the chances of recurrence are. I was told that for Stage I and II 51% of the time the score comes back low...and that is good. 1-17 is considered low; 18-31 is intermediate and 31-100 is high. My oncologist ordered the test because she is not sure how much chemo to subject me too. Even though I had cancer in the SN...microscopic but still there it typically means chemo but the tumors are small. So it is a good thing/bad thing. Do I really want more info to worry me but at the same time my treatment may not be as severe if my score is low. Obviously there are no guarantees either way. We just have to accept these stats and tests for what they are and they are all we have to go on right now.
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SuperSally... I have a port and it was only "painful' for a day and then no problem... and I hardly notice it all all... AND it make infusion super easy. I have read posts about chemo leakage for non-port women and THAT is painful... like 3rd degree burns. And the Onc nurse told me that risk before I got my port, so I am just fine having a port.
Also, about SE... I am on TCx6 and have very few SE... a little heartburn for a couple of days, and of course hair loss... and the Neulasta can cause bone pain, but I took Claritin for round 2 and didn't have pain... I would not be afraid of the SE if the treatment is appropriate.
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I just started TCH on 2/24. My onco didn't recommend a port.
I have concerns about that...I had 6 nodes removed. Am I at great risk of lymphedema if I allow needle sticks in the node removal arm?
My onco says now - it's folklore. The nurses were a bit skeptical. So am I.
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Don't use that arm, ever... not for needles, blood pressure, nothing. I would just get a port.
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pejkug3 - TCH through arm w/ nodes removed? Not by my onc.
SuperSally - I HATED my port for at least 3 weeks, now 8 months later it is still my best friend! I LOVE it. So just in case you decide to get it, don't get too upset if you hate it at first, you will grow to at least like it!
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Everything I have read and everything I have been told says NO needles in the node removal arm.
I was surprised when the onco said that all that was 'folklore'. I quizzed the chemo nurses and they seemed skeptical of that as well.
I have good veins, but I'm not sure one arm would hold out for TCH x 6, plus the year of Herceptin.
I'm still a medical procedure wuss...the thought of another procedure stresses me out.
The onco I have it from a big University hospital (commutes here once a week)- he said that they don't really do ports at the University. He thinks that my smaller facility does them mainly for 'revenue'.
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Pej, I did not have a port, but I had chemo first. That allowed them to use the arm headed for surgery for the chemo. Now after surgery we use the other arm for the Herceptin. The first 3 chemos went great. Number 4,5,6 I developed a weird round skin reaction at the iv site. Not a burn, but itchy. The onco on the chemo floor that day swore he'd never seen that , but it could be from the carbo. A nurse at the oncologist office said she had seen this before and it usually fades. Good point that you have already had surgery and will have one arm to use. That case I might go get ported. It would certainly lessen your chemo sesson anxiety. libraylil0
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Pej - I have a port, and although it creeped me out to get it, I am glad for it now. We Her2+ girls are a little different - we don't just get 4 or 6 treatments. With that year of Herceptin we end up getting alot more IV's. This makes the port a good option for us.
edited to add - especially with the node dissection and having only one arm to use...
And also remember that you will be having blood drawn all the time too. I have bloodwork done every time I go for treatment. Yet another needle in that one arm... And other tests require IV's (muga) or bloodwork too. Just alot of vein work...
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Pej
My onc prefers to start with peripheral iv and place port if that doesn't work. I'm ok with that right now but if we have issues she'll order port0 -
I'm convinced! Port surg scheduled for 3/14. Bdavis, that was a great point about only having one arm for them to use and not risking it. The BS nurse told me no one ever regrets having a port, so I'm in, sigh. I know the surgery is do-able, compared to what I've already been through especially so. Thanks for the input, ladies, sorry you are here but glad to have someone to help me make these decisions!
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You guys are convincing me, too. I'll probably have TCH #2 (3/17) and then get a port.
I'm planning on quizzing everyone about it again at my chemo appt.
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Just an added FYI - when they put my port in - I was able to elect "lesser" anesthesia - so the "return to earth" was a much better ride... I was in and out of surgery in 30 minutes - and back home the same morning. When she took it back out... I asked if I could just have it done in her office... it came out with no problems... no pain.
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Hi Ladies,
I went to the oncologist today... No chemo. I'm feeling like a thief in the night... like I got away with something that I shouldn't have. My choices ... go with the progress of medicine or the standard practice of medicine. I'm choosing the science. Here's the info: I am 46 yrs old, premenopausal, stage IIa (1.75cm), grade 1, 1/3 nodes SN, ER+/PR+/HER-. I am working with a BS & Onco at the Breast Center. They ordered two assays; the oncoscore was 15, the mammoprint 7.5 ... both tests concurred a recurrence rate of 9% with or with out chemo. Translation - 0% benefit of chemo. This goes against everything I read about nodes & chemo. I am having a full set of scans done (CT/PET) and if all clear I will do rads followed by 5yrs tamoxifen and 5 yrs AI. I asked about ovary removal. Current clinical trials are showing for stage 1 & stage 2 patients that ovary removal works best after a short term (1-2 yrs) of tamoxifen.... but the jury is still out on that. I also asked about the UK not using the scores to determine chemo... she said that at the last ASCOP (????) that had changes. I have to "sleep" on it (as if!).
Anybody else have a similar story?
(note: they told me never use the surgery arm for blood pressure, needles, blood,etc for at least 5 years.)
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Your stats are similar to mine, but I didn't have the tests... onc said he wanted me in chemo regardless... I had 1.9cm, SN micromet and other clean node... ER/PR + 98%, Her-... No Scans either... BRAC -... Leaning toward PBMX and recon in late July and skipping rads... then tam or something after that... If I have MX, that may change the hormone therapy.
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Debbie....Your stats are very similar to mine. However, the Docs here in Canada do not use the oncotype testing...therefore chemo for me. I had lumpectomy so had rads. So different everywhere. My onco did say to me that UK has new research coming out on BC...especially related to radiation and radiating axilla area in younger BC patients--seems like they have lots of new research for sure.
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Bluelily...no wonder we stay confused sometimes. I was told by my BS that regardless of the results of the oncotype test I would have chemo because there was node involvement...one and microscopic and in fact the BS and Pathologist missed it during my surgery. The only question was how aggressive the oncologist wanted to be. Still you had such a low score and the fact chemo wouldnt help you that I can understand why you wouldnt have to have it. Why would you if it would be of no benefit to you....a friend of mine had chemo and her score came back 10 which is low. She said the fact it was invasive cancer was all she needed to hear plus she is a nurse at St. Jude and deals with cancer patients every day so she has seen the worst and seen it come back. I wish they hadnt scheduled the test because if it comes back high I will be even more anxious. It is also interesting that if there is only one node involvement the insurance co denied coverage. I have Blue Cross and they never said anything about how many nodes were involved just that I am Stage IIa.
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Edwards... My onc didn't give me oncotype test cuz he said node involvement = chemo... even microscopic node involvement... so just trust that.
So are you saying your insurance won't pay?? You can appeal it.
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Bdavis /Edwards I was also told (now mine is grade 3) that nodes or HER2+ means chemo. The BS also told me even if I had a mastectomy I would need rads, because of the nodes. They will radiate the axilla and the up high collar bone nodes. I feel like they can throw whatever at it. My MO does not do the oncotype if you are HER2 +. libraylil0
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hi ladies,
new here...had a lumpectomy last week, just got my path report yesterday. Clear margins!! whoo hoo!
Okay, so I have 1/13 lymph nodes so I'm going to guess I am getting chemo....and my preliminary report from core biopsy showed that I am her2- and PR- and the ER they were not sure. (3/8 allred score) so they are retesting that and results should be available next week. I am definitely on the path to probably being triple negative or potentiallay her2-, PR- and ER+.
My tumor was grade 3, I am 37.
Does anyone know what kind of chemo I'm likely to get? Or how long? Any one else in similar situation?
Thanks
KG
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