Stage II w/Lymph Node Involvement
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I had chemo before surgery and pathology so they told me it makes staging very hard.I think when your largest tumor is in the node and is grade 3 they are more concerned about mets.I also have a very good med onc who really cares about his patients.If you feel you need a bonescan ladies keep pushing until someone listens.You know what your body needs.
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I was diagnosed October of 2010. As part of the overall diagnostic procedure they did biopsies of my lymph nodes and found cancer on my left side (same side as the breast that showed cancer). They then performed a PET/CT scan to check for mets and found none. Final diagnosis was Stage IIa - had a mastectomy and they took the lymph as well - I tested positive in 2 of 19 nodes. They treated me very conservatively. No rads because only 2 nodes were affected, no chemo because testing for the oncotype put me at 14. I was on tamoxifen for 6 months, but developed blood clots, so my oncologist wants me on an AI after the clots clear (they figure a couple more months before I'm on any meds again).
I'm really nervous about recurrence, because the treatment has been ultra-conservative. At the same time, because my body over-reacts to just about everything - I'm VERY thankful I didn't have either rads or chemo.
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My onc believes in regular scans and I will have a PET or a CT periodically for the next 5 years. In fact, I just had my first PET scan post treatment and am happy to report that there was no evidence of disease. My tumor markers were also checked and within normal limits. I may feel differently about the scans when I'm a little farther down the road, but I liked hearing the reassurance that today I am BC- free.
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I think it is true that if you are concerned....get your doc to do the scans. I had pain in my left side that wouldn't go away...was worried...he did another bone scan. Puts my mind at ease but he also did mention that many of the scans won't show any mets at real early stage. Just have to push for what makes your mind rest.
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Thank you so much for this thread!! I have read through it an it has been so informative
I have posted this question in other areas of the board and have received great informaton. If anyone here has experience with this or advice too, I would greatly appreciate it.
My mom is ER+, PR+ and HER2-. Her tumor was 2.5cm. When it was removed, they tested 2 nodes. At the hospital, the BS told us they looked good and there was a 90% chance the cancer had not spread to them. We were informed Thursday that one of the two nodes tested positive with 4mm. It also had spread some into the fatty tissue behind it. They are wanting to go in again and remove more of my mom's nodes (I believe all of the nodes and the fatty tissue) this week. After that she will do chemo, radiation, and then Arimidex for five years. Is it standard to have more nodes removed? We are gong to discuss the benefits of doing all of the above mentioned that vs. just the chemo, rads and arimidex with. If the nodes have to be done then we will, but it brings up her survival rate by 1-2%, she will probably opt out.
Also, is chemo area specific or would it kill cancer cells in a different part of her body? She has pre-cancerous cells on her vulva that need to be taken care of also. The doctor said it was unrelated to her breast cancer. We are afraid that if we wait until the surgory, chemo and rads are done that the pre-cancerous cells will turn to cancer. Any help that anyone could provide would be appreciated. We are going to talk to the oncologist in the morning. I just want to make sure that I am well informed when I go in there and am not wishfully hoping she might not need surgory. Thanks
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Deanna M, I was like your mother because my one SLN looked clear during surgery, but the pathology report showed it was positive. My surgeon said that the standard of practice now was to remove the rest of the nodes although the standard was moving toward leaving the additional nodes alone since they would be treated with chemo and rads anyway. My gut feeling was that it was better to remove them. It put me at greater risk for lymphedema and I do have a mild case of it, but I enjoyed the peace of mind of knowing that additional cancer would be removed from my body if it was present.
I had four rounds of TC to kill any BC cells that might have been lurking anywhere in my body. Whether chemo for BC kills other cancer cells, I do not know.
Good luck with your appointment tomorrow. Please let us know what happens.
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Deanna.. I was also told I had clean nodes, but full pathology showed microscopic involvement (.38mm) and my tumor was 1.9cm and my nodes were contained... nothing had spread into the tissue... I think that is a key factor. I did NOT have more nodes taken, but again mine was microscopic and self contained... Plus a second attached node was clean... The chemo is main thing that will help kill any rogue cancer cells.
I think if your mom has more nodes taken, insist that it is only the first level of nodes (I think there are 3 levels), and if they take the extra nodes and tissue and its an all clear, then radiation is probably not needed, as the standard is radiation for 4+ positive nodes.
As for the vulva, I would have those cells removed now, while the extra nodes are taken, then do chemo, then maybe radiation and then hormone therapy.
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Thank you for the responses. We met with the oncologist today. Unfortunately, my mom will have to do the Axillary node removal tomorrow. She will also have a port put in for chemo. After that is radiation and Armidex. We spoke with the oncologist and the BS surgeon about not having to do all of the treatments mentioned, but they were pretty adamant that they were necessary. I was really hoping otherwise, after reading of how all usually are not need. Because the cancer "burst" from the lymph node into the fatty tissue, they are going to treat it very aggressively. We were really thinking about skipping Chemo but the BS is saying that the Cancer has a VERY HIGH chance of coming back if we do not do Chemo. That took me by surprise. Thank you again for the help. If she has none or a minimal amount of additional nodes with cancer, then her treatment plan will be 4 sessions (1 x every three weeks for 2.5 hours). Her chemo treatment will consist of taxotere and cytoxan. Thank you again for your help and responses.
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I did 6 tx of Taxotere and Cytoxan and worked full time... most people are fine on it.. I suggest she put bags of peas on her finger and toe nails during the taxotere infusion... I did and had no nail issues, but many women do... its cheap and easy... also have her drink a lot of water before during and after chemo.
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Thank you for your response bdavis. It is encouraging to hear positive outcomes like yours. I am hoping she is fine on it too. I will look into the pesd now.
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Can you tell me what PESD is?
Thanks
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oops... typo... PEAS, frozen peas.
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Hi Betsy- I am 2 weeks post BMX & TE & I have my first meeting with my onco on Wednesday. What is the deal with bags of peas & Taxotere? What does it do? Thanks for your help... I feel so out of control. :-(
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I used frozen bags of mini cooler blocks on my hands and feet. It helped. I still managed to lose by left big toenail, but I think it could have been worse had I not used it. My thumbnails turned into black streaks, but that is totally gone now and went away rather quickly after I was done with chemo. I also worked through tx- found it helped me to stay together. I had 3x Taxotere and 3 x FEC. I felt the worst during FEC and was warned the Taxotere would really be hard, but I followed their directions closely when taking the anti nausea medicine and didn't hold back from takin atavan and anything else to help me function as "normally" as possible.
However , everyone is different. One of the girls who came almost the same time as I did for chemo- did not work. She had some issues with side effects and decided trying to do it all just wasn't worth it.
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Rose... Taxotere can make your nail beds loosen and the nail can lift off... it can be painful... So I religiously brought my cooler of peas and drinks to chemo and about 10 minutes before Taxotere I would lay a bag of petit peas across my nails (I wore socks) and would keep the peas on till about 10 minutes past Taxotere... My finger nails never even got ridge marks... My toes were also fine, but one nail got white ridges (that I JUST noticed this week and chemo ended in May) I had nail polish on my toes since July... OH and I also painted my nails with Sally Hanson nail hardener...
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I had Taxol, which is a cousin of Taxotere, it can also cause nail issues. I also used the Sally Hansen nail hardener and never experienced one issue. It works!
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Tammy... How did today go?
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They didn't call. I've submitted two online requests for information over the past week and no one has called or emailed. I'm wondering if maybe it's a sign that NOLA wasn't meant to me for me??? My BFF is all lined up to go with me though if that's what I decide.
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I would call them... Liz Markey is the one to ask for ...504-899-2800
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Jess, Betsy & Sundermom, THANK You all!--- I don't know how I would make it through this BC "thing" without the never-ending support and information from all. Once I have my plan & it contains Taxotere, I will arrive armed with my cooler of frozon peas, water & my nails painted with Sally Hansen nail hardener!!! Interestingly enough, I was going to ask my onco if I could have clear polish on my nails during chemo.
Love Hugs & Hapiness to you all-
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I will call tomorrow. Today I have to say that I experienced the most pain-free day I've had since my BMX. I do think that implant was evil. It caused problems right from the beginning and I think my body is happy to have it out
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Oh okay...I will be sure to stock up on bags of peas. Thank you for the tip!
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Tammy... so glad to hear you are finally pain free... Yes, do call and you won't regret it.. I know you emailed them and are waiting with bated breath for them to call you... they are very relaxed down there... and their calmness is great, but I know when you want a date and to know about insurance you want the callback yesterday...
Deanna... I reused my bags of peas... just popped them back in the freezer when I got home... of course after 6 tx, they were in the garbage...Also, visit the two threads TAXOTERE IS A NIGHTMARE and TAXOTERE TOOLBOX... you can get some ideas of ways to stay side effect free... and don't be scared off by the thread title.
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The chemo centre provided ice packs for hands and toes had a little trouble with my toes but the gel nails i kept on through treatment seemed to save my hands.With taxotere it was the mouth issues and muscle pain that was the hardest to handle.Sounds awful but its better to be prepared.You will get through it.((hugs))
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Hi Everyone. I sent a note off to Johns Hopkins ask an expert and asked them about checking for mets in stage 2 with lymph node involvement. Here was their response:
Generally speaking, studies have supported that unless you have more advanced stage disease, or symptoms, doing additional tests to find disease is not warranted as disease is almost never found. If disease is found at other sites, treating it earlier does not improve outcomes, and in fact, finding disease elsewhere would make the stage of disease Stage IV metastatic disease and no longer curable. So yes this is standard practice not to do extensive tests like this.
Still seems like an odd answer to me - basically, if you find something it would change it to stage IV so therefore we don't check in order to keep it at stage II. And, the words like "almost never found"....
I see my MO again next week before treatment. I'll discuss it more with him then.
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I was told the same for survivor status - -no more tumor markers done and only scans if symptoms present. Yearly mammogram only.
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I recieved oposite advice from my med onc and it makes more sense to be ontop of it,if or when it occurs.I am glad I am getting my checks and scans.Mind you my staging was done after chemo so it is questionable.
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mnjclark, that's very interesting and surprising, what Johns Hopkins says about scans in our case ... I had both a CT scan and a bone scan.
Besty/bdavis, I am so amazed and impressed that you were able to work full-time during T/C. Actually, I'm amazed anybody can do chemo and work at all!
I am still having such a hard time trying to decide about whether to do chemo or not. I just don't know if I'll be strong enough for it. I met with the HIV pharmacist, who insists I can (and should) stop all HIV meds if I do chemo -- although no other patients at Kaiser Santa Rosa have done that (they've all been able to switch HIV meds but I can't due to virus resistance.)
So my choice is: contain HIV or try to stop cancer. Waaah.....!
Today I meet with another MO in the same dept (can't afford to go outside of Kaiser). I also asked my MO for the Oncotype test (she offered) but after reading DeannaM's post above, I'm worried because I also had extracapsular invasion on my one positive node. My MO didn't specifically say that meant it would be more likely to recur, although she did say it was bad.
Every hour I change my mind on which way to go! Right now I'm leaning toward chemo.
Oh, does anybody here know if Kaiser will pay for Neulasta shots instead of Neupogen? I really, really would much prefer one shot to many.
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Ethersize - Sorry you find yourself between a rock and a hard place deciding to blast the cancer and give the HIV opportunity replicate or skipping chemo and possibly increase your risk of recurrance. I had 2 positive lymph nodes with extracapsular extension. Both my MO and RO said that radiation (edited to add to the axilla) would take care of the stray cells that extended from the nodes. I think that with ECE radiation is usually recommended. Have they discussed that with you? Hopfully, the result of your oncotye will help you with your chemo decision.
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toomuch, thank you for your response!
That's very interesting about ECE and radiation. I'm definitely getting radiation and hormone therapy, and my MO did say the hormone therapy was the most important part of treatment (more than chemo, that is).
My MO just emailed me back and basically said she wouldn't even order the Oncotype test until I meet with the other MO for a 2nd opinion.
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