Stage II w/Lymph Node Involvement
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libraylil ...I just had this conversation 30 minutes ago with ONC... If I have mastectomy, I DO NOT need rads because the standard of care in the US is if you have a MX, and you have less than 3 nodes or a tumor smaller than 4cm, you don't need rads... I had a 1.9cm tumor and a .38 micromet in one node, so no rads for me.. If I had had a larger tumor OR 3-4 nodes, then I would be having rads...
KG1234 ... I am not in your situation, but I would guess that because you are young with an agressive tumor, you will probably get AC-T... My chemo is sort of preventative and I am getting TC... The AC-T is Ac evey two weeks usually for a period of time, and then Taxol or taxotere of maybe 12 consecutive weeks... I am not on it, and this is just from reading but maybe someone on it will chime in... That would be my guess for you.
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KG--I'm not sure I can answer your question regarding type of chemo as it seems to be so different with everyone. I had FEC-T which is one of the more recent "generation" of chemo. I think the type and duration depends on the tumour etc. I had 1 node positive and tumour was below 2cm and grade 1. My Doc put me on FEC-T for 6.
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B Davis That clears it up.. I was almost sure he told me before surgery M means no rads. We knew then one node was positive. So with the 3 positive nodes and tumor size I was transferred to the rad train. libraylil0
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Bluelily... Regarding ovarian suppression....your doctor is referring to the ongoingSOFT trial. That study is comparing premenopausal women who do not receive chemo but choose ovarian suppression with either tamoxifen or an AI. Women who also just do tamoxifen are compared as well. Results will not be known for several years. Then there is all of the zometa studies. The Austrian study which said women who were premenapausal that did ovarian suppression with zometa did very well. Azure study muddled the use of zometa. That study saw the most benefit in women who were 5 years post menopausal. Results of more studies are being anticipated... Stay tuned. Do a google search and read allmof the studies and then discuss with your doctor.
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There are some other reasons they choose to do rads even with a mastectomy and only one positive node with relatively (2.5cm) small tumor size. My one positive node was a macromet with some evidence of cancer in the fat surrounding the node, so even though margins clear, etc. I am doing rads.
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Seems to me the recommended treatments vary quite a bit. I am postmenopausal 61 yrs. old with a 5 mm tumor and 2.5 mm in 1/11 nodes. Oncotype score 18. My hormone receptors are 90%+. Her 2 -.ONC recommended fairly aggressive dose dense 4 X AC every 2 weeks followed by 4 X Taxol. I had heavy SE's on the AC including Foot Hand Syndrome that resolved into temporary neuropathy. I am afraid that the Taxol which can come with the threat of permanent neuropathy was more risk than the benefit it would confer. My young agressive ONC not happy but I got a second opinion -- an older doc -- who thought my SEs were significant. He said lifestyle changes -- lose weight and add daily exercise -- would close the gap on what I might lose from the Taxol. So that's the way I'm going to go. I'll have 6 weeks of RADs 5 X week and then go on Tamoxifen. Working to keep the recurrence at bay should be a good motivator to exercise! So I guess the treatments have more wiggle room than what you might expect.
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KG1234- I am also 37. I had a BMX on 12/15/2010. My tumor size was 2.2cm and the SNB revealed a macromet in the SN (5mm) and a micromet in the 2nd node. Thirty additional nodes were removed, but were all negative for BC. The Onco-type test did not apply in my case because I was told it was developed for node-negative patients. Due to being node positive and my age I am being treated with dose dense AC-T. I will also take Tamox for 5 years, probably followed by 5 yrs of AI. Chemo is manageable. I have five kids under the age of 11 and have continued to work full time as an elementary principal.
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where were you all my cancer lefe????gosh i just found you.cannot read all those pages but just read random.thanks who ever explained grades.i never understood that.I now know im grade 11b.had lump.no chemo onco score 10 yay. sn biopsy positive so dragged my feet on the rads.BUT I did them.all 33.for anyone thinkin about not doin them RADS ARE A WALK IN THE PARK.esp.if you did chemo.I moved my arm right after surgery as i have always did lots of stretching.still doin it.finished almost 3 wks ago.There is a light at the end of the tunnel.it just took me 14 long hard mos.I wish you all the best of luck.God bless.huggggs K0
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Hey ladies! Haven't been on in awhile so had a lot of reading to do. I just wanted to add something about the port. I was awake during the surgery, but didn't feel a thing. They gave me fentanyl and versed--some people sleep with these, but I never do. I was sore for a few days, but not too bad. I've had mine for 2 years now (I had two different cancer dx back to back) and I don't even notice it's there. Make sure you get a "power port" or "smart port". These can be used for ct scans too. I have to carry my smart port card with me so the techs can see it to make sure that is what I have. Being on Herceptin I have had several MUGA scans and my port is used for that too. My onc said I can keep my port for as long as I want, so I might keep it until I no longer need 6 mnth ct scans anymore. I have a perscription for "Emla" cream (a lidocaine cream) that I put on my port 1 hour before it's accessed, and I don't feel a thing. Some people don't need the cream, but I like it. After putting a large blob of the cream on my port I cover it with Glad Press N Seal to keep it covered.
I can't add anything to the oncotype test discussion because I don't fit the criteria (SP?) for it--I think because of my HER 2 status, but I don't remember. There is just a certain group of people that it is used for.
Hope you are all doing well! I did AC+T last summer (finished in Oct.) and then rads. If I can be of any help--just ask!
Tina
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Wow Ladies - thanks for all the input....I am definitely not as worried about chemo in my mind as maybe other people are....although I am 4-6 weeks away from that, so closer to the date I might get more concerned/or have anxiety.
Quite a few of you are so close to me and what I have....:) It's nice to connect with you.
I have 3 kids - they are 7 (yes, triplets!) all boys and they are a handful. I'm off work now, I commend you tsundermann --I can't imagine working.
Since I am only 7 days out of surgery, I'm still finding it really hard to use my right hand...next week is massage therapy and physio. I have a drain in still so I'm not out and about as maybe I would like to be. Does anyone know how long this lasts? The underside of my right arm is number than numb and feels heavy.
Oh, chemo question - will I need a port? How is that determined? And what exactly is a port? I'm a little unsure about all this.
Thanks, KG
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I highly recommend a port... It is a device they install under your skin that self heals... so they use a special needle and it goes through a little skin into a silicone self-healing cover which then connects directly to your blood vessel... If you don't have a port, they have to find a good vein everytime and give your infusion that way... The problem is, you can not use the arm on the cancer side for one, so that leaves one forearm... Second, if the chemo leaks, it is like a 3rd degree burn. 3rd, after time, veins can collapse or become damaged, so that isn't good, because as I said, you only have one good arm, forever for blood draws.
The nurse at your infusion center will determione if you are a candidate to NOT get a port, but I am glad I have one. The surgery was a half day event, and it was uncomfortable for a day or so... sore neck, and felt funny when I'd bend over... but just 2-3 days after, I hardly knew it was there.
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I didn't have a port and went through chemo using my veins. As I didn't have Herceptin...I had 6 treatments so it was doable with the veins. My nurses were really good at getting a vein.
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My onc's office doesn't give you a choice if you are doing adriamycin. They indicate that it is quite destructive on the veins. I was not in favor of doing another surgery, but it was light anesthesia, and I felt fine that same day. I don't even notice that it is in, so I'm glad I did it, no pokes for chemo day.
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Pejcug3: It's hard to believe that in this day and age an oncologist would say lymphedema risks are folklore!
Please check out the Lymphedema threads on this site. The risks are very very real and recent studies have confirmed this. I find it unprofessional to say the least that a doctor would ignore those risks on your behalf. It's not hard to make sure one's risks are decreased through vigilance. The LE threads will give you all the facts; please learn to be your own advocate.
Anna
edited to fix some strange font issues
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Voracious reader.... thank you for the info. With a very high ER score, I will be looking into this . I will be doing full scans this week to ensure no mets. I understand that grade 1, low onc score are the reasons behind the no chemo. The way it was explained was that the chemo does not attack the renegade cells only those that have attached and started reproducing. Thus the scans... its a pick your poison scenario.
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KG1234 - I had four drains to start and I think that last one came out at 2 weeks. The drains are definitely one of the more annoying parts in this process! I had all of the nodes removed under my right arm so I had numbness (exactly like you described in the under arm area) and some weakness on that side for several weeks. I'm now almost 12 weeks out have my complete range of motion back and no numbness. I was vigilant about stretching that exercising both arms, even if it meant just pumping my arms while walking on the treadmill or crawling up the shower wall into a full stretch.
As far as a port goes my onc said he is not a big fan. Knowing that I was only going to receive 8 treatments he recommended no port. He had the infusion nurse come in and check out my good arm and she said I would be fine. I had no problems with AC damaging the surrounding tissue. Now, that being said, it does seem to be harder and harder to get blood drawn. My veins just don't want to give it up! We'll see how tomorrow goes. If I have to get stuck 5 times like has happened in the past then I will be asking for a port - even if it's only for the last 3 treatments. I have read something about asking for a "power port" so that can be used for MRIs, too.
Tammy
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I had 4 DD AC and 4 DD Taxol and did not have a port. My onc said to start without one and see how things go. The onc lab did a good job getting my veins to come up. Only once did I have the lab tech poke through my vein. The day after that AC treatment, a raised bruise came up at the IV site and I was worried that the AC had leaked through. I had a dr check it when I went to the infusion center for my Neulasta shot the next day. He confirmed that the AC had not leaked and it was just a bruise. I had no other incidents during chemo. I was ok with not getting a port. I am not great with needles but was able to keep calm as they started each IV. I never looked, just closed my eyes, breathed deeply and visualized myself somewhere else. Gina
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bdavis I just got my Oncotype test results back and it was 11. My oncologist told me today no chemo. She said node involvement no longer means instant chemo. The test showed my cancer is not aggressive and because my score was so low she did not recommend chemo. Once upon a time it was the case but not now with the oncotype test. Since this test is being used by so many doctors they have found a large number of them have changed their treatment plans as a result. They found doctors were overtreating their patients so they are recommending this test to be sure just how aggressive the cancer is. Thank goodness for the test. I can handle radiation. Sure didnt want to do chemo. The test is expensive so I am thankful I have insurance and it will pay for it.
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So far all concur ... (premeno but on the older side at 46 ... as a grade 1 with low onco of 15) no chemo. Went for the PET scan yesterday as an added precaution regarding metatsis. As it turned out .. insurance questioned paying the onco test ... but after I called they are reviewing since it is being used to determine the benefits of chemo. The grade and oncoscore are changing early stage treatment for many of us. On a side note, I wish I had brought a driver for the PET scan, the headache and nausea made for tough drive home.
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BlueLily, I am very similar to you stat-wise. However I'm 40 and my oncotype was 17. I decided to do chemo with my family history of BC and my past history with cervical cancer. I tested neg for BRCA and cervical has nothing to do with breast, but I just want to know that I have taken all the steps I can to prevent cancer from coming back. That is also why I chose BMX vs uni. I had a 3 mm met to the sentinal node on the cancer side.
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Canadian system does not use the oncotype testing...therefore, it seems that node positive equals chemo. I'll have to ask my Onco when I see him next why Oncotype isn't used here. Similar to Barbara---I had cervical cancer and although not related to breast cancer--was too close for comfort. I had cancer in one node and also tested BRCA negative. Chemo was presented to me as not only an option but was strongly suggested. I also had rads as I had lumpectomy.
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Well.. My onc didn't give me the oncotypw test even though my insurance would have paid... he said, he wanted me to have chemo regardless... And knowing myself, if there is a ? about treatment, I need to err n the side of caution... so I didn't question his opinion... and I am fine with that... Its just an insurance.
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SuperSally & BDavis - I totally agree with your decisions ... and if there are any mets shown on the PET, I too, will choose the chemo. I've tormented over it. Our difference is age, I am close to 47 and am suddenly beginning periomeno thanks to the last two months of stress... that is taken into account along with grade/scores.
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BlueLilly... I am 48 and was also close to perimenapausal pre-BC ad now am for sure entering some menapausal stage thanks to chemo...
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Here's a link to an article about some new research that suggests that lymph node status should not be linked to BC treatment and outcomes. It was research done in Amsterdam but thought it would be interesting for this group. Here's the link: http://www.cancernetwork.com/conference-reports/mbcc2011/content/article/10165/1819722.
I'm going to see if I can find the actual study findings and read more about it. Hope the link works.
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ck_moma - Great article! I may print and frame it!!! It's nice to read something encouraging for us node-positive ladies. My onc has always told me not to get freaked about the 2 micro-mets, but everything you read (except this article) says otherwise!
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It was interesting to me that the Oncotype test doesn't really mean that much to me as a pre-menopausal woman. The Oncotype research has been done on post-meno women with the exception of one study, which had only 300 women pre-meno. The pre-meno study as well as the post-meno study indicated that I'm on the border. I'm forging ahead to chemo with a clear conscious even knowing these stats, the article to me is not validation, but further grey evidence.
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Hi there everyone. With regard to the Oncotype testing, I live in Ottawa, Ontario, Canada and I did have Onco testing done - paid for by our Ontario Health Insurance Plan. The test gets sent to California and if OHIP didn't pay for it, it would cost $4,000. Thank God for our provincial health insurnace!! My Onco test came back at 21, so a grey area for sure.
I laboured and laboured over my decision and finally decided that I would not get chemo. Felt the cons outweighed the pros. Besides, by the time I had decided that I would forego chemo, 16 weeks had passed since my lumpectomy and my onc said that the "effectiveness" at that point in time was not as positive. My onc forgets that I didn't get the results back until 12 weeks after (it is best to have chemo done within 8-12 weeks of surgery).
My main worry is the lymph vascular invasion that is present. I am hopeful that the cells didn't spread anywhere else (my onc also said with the invasion, theoreticaly the cells could use the lymph system to get around and could even bypass the nodes). Like I said, I am hopeful. Have to keep upbeat. The Rads and Tamoxifen should take care of everything. Am also seeing a naturopathic doctor specializing in cancer treatment and am really beginning to believe everything will be okay
Good luck to all!
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Ch08567....that's great that you d the oncotype. I am guessing that CDN Docs will only use in certain situations? I hadn't met anyone who had the testing here...shows what I know! You have to do what you think is best and go from there.
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Thanks Rachel. I think my onc ordered the oncotype test because of the 'unknown' with regard to the lymphvascular invasion. She thought that maybe it might give a little more insight than what the testing here showed. Unfortunately the test came back with the same numbers in the 'grey' area. Apparently LVI is not taken into consideration for whatever reason. Testing is going on now to determine how important it is in predicting outcomes...
Have a great weekend!
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