Stage 2B with positive nodes
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Erika
I had the same thing happen to me, I had the Lumpectomy , they did not get good margins so had to go back in for better margins and to check for nodes , . Shot me up with the dye to find the SN and nothing, all the dye went under by breast bone ( talk about being scared crazy).Ended up canceling that surgery, Had to wait 2 weeks for a PET scan to find any hot nodes and did find one that was positive . The surgeon told me it happens in about 1% of Surgeries and they have no clue as to why . With the Pet they knew which ones to go after , ended up taking 3 with 1 being positive
I understand your frustration, it can be a emotional drain.
Huggs
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Hi, I’ve just discovered this conversation and want to thank you all for sharing your stories and I’m hoping you’re all still doing well and fighting strong! I was diagnosed 3 days before my 41st birthday. No family history. Had a lumpectomy and lymph node removal, then Chemo (AC&C) followed by taxol. Now I’m halfway through radiation. I’m going on tamoxifen once radiation is over and monthly lupeon. I count myself lucky as I’ve been able to continue my work as a Group Fitness Instructor through all this and it’s helped me stay positive for the most part. But I also have my bad days where I wonder about survival rates. Thanks to all of you for being so inspiring!
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thank you for this. I needed to see this today. I'm 28 diagnosed June 19 2017. Stage 2b grade 3 3.2cm and half way through chemo. Lumpectomy in 3 months unknown about my lymph nodes until then. I'm terrified. Anxiety was bad today and reading your story has given me hope. Er+/pr+ her2- BRCA negative. The unknown about the lymphnodes is what's killing me. They can't feel anything but that don't mean anything.
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bah1976 and NicoCull, welcome to Breastcancer.org! We just wanted to let you know that we're here for you and we're so glad that you've found us and decided to join the community. We know you'll find great support and information here, but if you have any questions for us please do get in touch.
Warm wishes,
The Mods
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NicoCull, did you have an ultrasound or MRI that showed node involvement? They can at least tell if the nodes are enlarged or suggestive with imaging. I think you have to have confirmed positive nodes for them to classify you as IIb. I'm praying that your nodes are clear and either way you will get restaged after surgery. Happy your chemo goes well.
I had a positive node, confirmed with biopsy, before chemo but after my BMX that node (with maker) was removed as part of my sentinel node testing and showed no cancer. I had a great response to preadjuvent chemo on my right side. Unfortunately they found cancer in my prophylactic left breast upon my BMX. I just completed radiation on my right side but we are not doing on radiation on the left. All my doctors are in agreement about this since the "surprise side" cancer was small, I already did chemo and there is no "evidence" of node involvement (although no nodes were removed on that side). I will be starting tamoxifen next week. Hopefully, that will hold off recurrence for a long while. I spoke with my BS about this at a follow up again yesterday. He is wonderful and has talked me off a ledge a few times.
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Nicocull....I was staged at 2B with node involvement. The nodes were detected through a manual exam and then confirmed with a MRI. I started chemo and saw positive progress. When I finally had my surgery....they took out 23 nodes and all were cancer free. So I completely get where you are coming from....the not knowing is the worst and just having node involvement is terrifying but try to stay calm. The fact that your doctors are having a hard time feeling your nodes is a good thing. Good luck to you and stay strong!!!!
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hi... my mom diagnosed with stage 2b breast cancer this may 2017.. doctor recommended lumpectomy but we asked for mastectomy .. size of tumor 2.5cm grade 3.. ER+ PR + HER-ve she had one sentinel node positive and also had axillary dissection..so out of 20 nodes removed only 1 (sentinel node) came out to be positive.(.1/20 nodes positive.. ). She undergone 4 cycles of AC chemo and currently going through 4 cycles of taxoterete... now I have a doubt.. some say radiation is necessary and some say no need of radiation as mastectomy with axillary dissection done and only 1 node was positive . ..what are your options about radiation???is it necessary ???
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Sowmyathayi, what does your mom's team of physicians say? What's your mom's opinion about what they say?
Most of us here are not oncologists or breast surgeons so all we can offer you is our inexpert opinions and personal experiences.
For me, between chemo, surgery, and radiation, I most disliked radiation--but with my own diagnosis I would never have dreamed of skipping it. Even if my team had offered me a choice (similar to "lumpectomy or mastectomy?"), I would have chosen to take the radiation treatments. I wanted to use every weapon available to kill the beast.
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thank u Elizabeth and bravepoint...i am worried if radiation can affect heart and may cause lymphedema of limb ?
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Sowmyathayi, the short answer is perhaps, to both questions. Your daughter must ask her radiation oncologist, because it all depends on the location of her tumor and the oncologist's plan for treatment.
With the current treatments, avoiding the heart is a big goal, and radiation treatments are carefully mapped for this purpose. Lymphedema can occur anytime a lymph node is messed with or removed, and the incidence of LE increases with rads to the underarm. But it's a risk/benefit decision for your daughter. Which is the greater risk--lymphedema or recurrent breast cancer?
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thank you for all the replies.. my moms skin over post mastectomy site turned gradually dark...should it be a concern? She is undergoing taxoterete chemotherapy... she finished 4cycles of AC .. she dint have radiation yet..
Anyone having similar problem of skin turning dark over mastectomy area??
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My best advice about the radiation is to consult with multiple radiation oncologists who will discuss the recurrence risk with and without radiation based on your mom's specific, unique variables. Be wary of radiation oncs who rely on broad generalizations rather than your mom's specific cancer features. Radiation oncs radiate. That's what they do. It's often what they'll recommend----so make sure the radiation oncs you consult with are speaking with you about your mom and her specific case and not just women your mom's age regardless of her cancer's features. And get 2nd and 3rd opinions so you feel comfortable with your decision.
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Hi Nicocull..did they order you an MRI? I was gonna do a lumpectomy..but then I switched surgeons, and the one I have now had me do a breast MRI. Found another tumor in the same breast
So now I'm doing a unilateral mx.My surgeon didn't see any node involvement on my imaging, but she warned me there could be "microinvasions" when she does the SNB.
It sucks not to know, but I guess we'll all know for sure, after surgery! This disease just sucks in general. I'm sick of drs and procedures already.
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My ono doc is telling me I don't need chemo. I am 2b with one node involved that has ene and LVI. She said That my cancer is very hormone receptive and it wouldn't help. She is the second doc to say it. Yet most of you here did chemo. I am getting ready to start radiation on my breast and all my nodes not just underarm then hormone tx. Had a lumpectomy tho now I am second guessing everything. Why would all your docs give chemo but not the ones I am talking to. It's not that I want chemo but feel like at 2b and everything else maybe I should be.anyone else in this position? Any thoughts
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scrv, did you have an Oncotype test? Mine same back low (12) and my onc said no chemo even tho my lump was 2.5 cm. I had a mastectomy and got 3 different opinions that also said no rads. It did feel like I was being under treated, but I have seen other stage 2 people who did not get chemo. Also, I am 100% ER, so I consider the anti hormonals as my main treatment.
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scrv- I have almost the same diagnosis as you, lvi, and “extensive” dcis as well, and Dana Farber told me no chemo. I think I was 100 er pos and 98 pr pos, so anti-hormonals are pretty much our best bet for treatment. My Oncotype was 14. I also had all my nodes radiated, just as a heads up, this means your neck too, no one told me that beforehand. No one gave me the consent form for neck radiation...which has different potential side effects from chest rads. Best of luck to you.
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thank you peachy for the reply. I am wishing I would have had more nodes removed. And a mx. I think I would feel much more comfortable. The criteria for onoctype is 1 to 3 nodes and how do I know that with only one taken. I have had a MRI since then and they said it looked good from there. But an ultrasound said the same thing before I went in for surgery. I am suppose to start rads in a little over a week. Mine is a lefty so I have to worry about the heart too. I have been offered proton radiation which doesn't zap as much tissue that doesn't need it. Do you've know or anyone know about that. Not much info out there for using it for breast cance
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thank you ms peregrine too. My onoctype was 7. So low but still only one node tested
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c-peachymom can you tell me more about the neck radiation.? I thought it was more by your collar bone than your neck. What kind of side affects did you get from it ? What did you do as far as lotion, taking care of it all etc. . If you don't mind me asking all these questions. You can PM me if you would like .
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Scrv
I was also 2b 1 positive node and had chemo but no rads, my tumor as 2.69cm and that is why I was told I need to have chemo but Rads were not needed for just 1postive node. This is the first time I have heard that chemo would not work on hormone receptive cancer. That is scarey
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It is above your collarbone, when I asked my RO about protecting my thyroid, she said the nodes are too close to the thyroid to block it from the radiation. When I asked about damaging the thyroid, she told me that “we have many patients who have to go on thyroid medication” !! Then she tried to tell me it was on my consent form, which she pulled up, and guess what, it wasn’t. Because it’s on the consent form for people getting head or neck radiation. I was pissed, because that’s a big deal to me, and you won’t find out until much later if it is damaged.
I used aloe after shower and after each session until the skin started to get raw. Then I used the ointment they gave me, then when it got really bad, they gave me silvadene to use. Just check with them whatever you decide to use, they approved the aloe I was using.
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Thank you for sharing all that information. I meet with the rad doc on Monday for the simulation I will definitely be asking her.! When I had the consult with her and her resident they just gestured across the collar bone. Never mentioned the neck area. Talked a lot about the ribs and bone issues. Never mentioned the thryroid that I remember. Will be asking about that too. Can I ask how long it took to heal up after? I am going to start taking care of my grandkids a couple weeks after tx ends. That was planned before all this . And so far still on track to be granny nanny for a 3 month old and 4 and 7 yo.0 -
My thyroid stopped functioning suddenly, a short time after rads were finished. I'm certain it was radiation. But then again, I know rads were an important weapon to kill the beast and prevent recurrence, so I think of it as a trade-off.
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did you or anyone else have the mammory nodes in the middle of your chest radiated? They are telling me they want to do them all at mayo. I had another radiologist at the U of M tell me today she wasn't convinced that the risk to the heart was worth it as it's rare it goes there. Talked to mayo after they completely disagreed. And didn't seem to like when I asked if I could or should possibly skip that area. Now what ??? Cpeachymom you had the same kind of big bummer node I did. Did they recommend that to you? It's all so hard to decide when they tell you different options and it's up to you. I have a few more days to decide . Thanks for for everyone's input i so appreciate it. My anxiety is through the roof and depressing
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yep, had those as well. I don’t want to scare you, but rads didn’t go well for me. I’m not sure I WOULDNT do it over knowing what I know now, but I ended up with lung damage, and have been on steroids ever since finishing rads in November to help it heal. I know rads makes a big difference in recurrence risk, at least that’s what they say, but for me, I ended up with one of the “very rare” side effects listed. The skin peeling and oozing is the worst of what most people get.
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oh Peachy I am so sorry to hear you are going through that. I am not sure I want to do the middle of the chest. But scared not to. Not liking the collar bone but that is near the arm pit so feel I should. Mayo may tell me to take hike if I don't want to do it all as that's what they recommend. They also have proton therapy there as a choice. Another choice to make. There is no research data on long term side affects. It can pile up on/or just behind the chest wall and there is no data on what that could cause long term. it has all the same side affects but suppose be less radiation hitting heart and lungs. But no real proof it works as well as the x-ray photon in the long term. It has been used more for targeted therapy in the past. Argggh!!
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I’m sorry for all of us that we have to make these sucky choices between sucky side effects and outcomes with no guarantees that any of it will work.
I don’t know anything about proton radiation, but I’ve seen it mentioned on some of the boards. Maybe try the Search bar for it. I doubt mayo will drop you, but in the end it is YOUR body and YOU have to live with the outcome.
You should be fine a couple of weeks after rads to take care of little ones, just a little tired still I would think. It all heals up pretty quickly once you finish, if it even gets that bad.
Best of luck to you.
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Thank you.. you also!
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scrv - one of the ladies on the Stage 4 forum had proton radiation to her sternum at Mayo - Zarovka.
Use the search engine and try to pm her - she is very well informed and yes it is a new option with much less tissue damage.
Unfortunately not a available in the Southern Hemisphere ( yep !!) nd much needed particularly for some brain work.
For ' routine' rads Mepitel is a dressing, not cream that works well. Google it for info or search this site. It imitates skin and forms a protective barrier.
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