Stage II w/Lymph Node Involvement
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SpecialK-IMO a BS should not be the one to make post surgical treatment recommendations. I would, however, think that your MO should be able to guide you in this decision. If you're still not 100% comfortable with his recommendation, talk to him one more time about the ASCO study. If you want to have a consultation with an RO don't be shy, ask your MO directly for a referral. I guess he could refuse to give you one but that thought makes me outraged!
Ultimately, what's most important is that you are comfortable with the decision that you make.
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SpecialK - Even though you BS and MO said that rads were not necessary, have you asked them for a referral? Or asked your primary care doctor physician for one? My insurance did not pay for one of my opinions, and it cost me about $325, but when the doctor realized that my insurance would not pay, he reduced the cost 50%. I have learned that a consultation is one price for insurance and another if you are paying out of pocket. Wishing you well.0
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SpecialK -
I realize that there is a distinction between having an MX and a lumpectomy. I did not have a MX.
But, like you, I had ALND and I'm having rads to the supraclav/axilla as well as the whole breast. I had 3.0mm cancer in a HUGE 5.7cm node - my RO and MO both said that they would almost consider me node negative because of the size of that node. I guess most people have nodes the size of kidney beans.
Due to that, before the new research came out, my RO wasn't planning to do rads to my supraclav/axilla. But with the new research, he decided that I could benefit from it.
Just wanted to add my 2 cents...
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6 1/2 years out 1node w 4mm metastases...staged 2B..Bilateral masts... No rads full AND ,dose dense AC/T delayed weekly Herceptin x 52, multifocal disease, DCIS,LCIS, IDC and vascular invasion... Still here!
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toomuch - My BS is an oncological breast surgeon who works in conjunction with my MO, so not a straight-ahead surgeon. They have a team approach and he has 25 years of data to back up his recommendations. I do trust him. I have not expressly asked my MO about the ASCO study - the timing of my last appointment with him didn't coincide with learning about that study, I had just asked about whether or not he felt rads were necessary and/or beneficial. I can certainly leave him a message that I would like to speak with him about it though - he is very accessible.
proudmom - I have not asked for a referral, mainly because neither of them recommended rads. Not to say that they wouldn't give me one if I did ask. I have never met my primary care provider - I am seen for routine matters on the military base at MacDill AFB and my provider is brand new, so probably not a good source of a referral because to outline my treatment would take an hour and a half...ha! My insurance has been good about paying for everything except for a genetic assay done on one of my biopsy samples (the bill was $5,000!) I did not ask for the test, did not sign anything saying I would be responsible if insurance did not pay, so that bill was adjusted off the books by Agendia. That was the first test that identified my receptor status from my biopsy sample.
pejkug - I would do the same if I had elected lump, it is just smart to do so if you are already having rads.
soccermom4force - I wanna be like you!!! Look at the similarity in our diagnosis lines.
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I just am popping in to say that I am still doing good!! Last month was my THIRD caniversary!!! I am sorry I haven't been on more often but life is very busy and normal. I remember how much I craved busy and normal during treatments....your day will come. If you are in treatments now, then just remember to say YES to help. That was intially hard for me but realized it gave ME more time with my family, especially my kids. And with ANY of life's challenges, remember there is one thing you can control....your thoughts. Make them positive and know there are silver linings to this beast. One of them is inspiring your warrior sisters:) Contact me if you need to vent, laugh, cry or just ask questions...always here for you!!!! xoxoxoox
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Soccermom4force and Warrior517 - THANK YOU!!!! You are both inspirational and give us newer folks hope.0
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I think the main difference between micromets and macromets is that the extra chemo with a micromet should take care of any stray cancer... I think the feeling is, let's say you have radiation but a cell or two had already escaped but not landed anywhere yet, the chemo would kill it... so with micromets, if the cancer had escaped past that node and was en route to a second node, the chemo would kill that. OF COURSE, I have asked this question numerous times about taking more nodes, rads to the nodes only etc... and 4 times been told not necessary... but I will ask again after surgery... but in the end, I finished chemo May 10, and it may be too late for rads for me.
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Just spoke with MO and he said (as I am about to leave for my MX) that with a micromet, he still says no radiation.... Phew!
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Hi everyone I have a question if the sentanal node was taken and the B S only took out 2 nodes one was only 2 mm the other was clear does that mean there could be more positive nodes down the chain as the B S wants a second surgery to take out the rest of the nodes,But I am having Chemo and Rads 1st.Im confused.
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Sandy115 - In my case, my two sentinals were clear. Cancer was found in a node further down the chain. I don't think that is very common though?
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SpecialK - If your breast surgeon is a surgical oncologist, he should be current with the latest studies. I'm sure that you are in good hands. Ultimately, what's most important is that you have faith in your docs and are comfortable with your decision!
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Sandy 115, It seems like taking additional nodes(ALND) is being replaced by RADS in some people & their treatment plans. Studies have shown that RADs is just as effective & it is believed to have less of a risk for lymphedema & nerve issues. I don't think everyone/everywhere is in agreement on this on from what I've read on the boards.
There could be more positive nodes "down" the line. ALND surgery or radiationshould take care of it.
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toomuch - I do trust him. He participates in loads of studies himself (the reason my biopsy sample was sent to Agendia!) and lectures around the world. Getting an appointment with him is problematic because he travels so much, and is in so much demand by patients. I am also in a precarious position from a timing perspective on rads because I didn't follow the normal timeline on recon. I should be having exchange surgery about now but I lost my left TE prior to chemo because of skin necrosis and am having it put back in tomorrow. My right TE still has the original surgical fill of 120cc, so I haven't even started the expansion process. These skin issues could make rads problematic for me.
bdavis - Good luck - hope everything goes great for you!
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Hey everyone. I had my appointment with my oncologist on Tuesday. He said the CAT scan came back clear no signs of mets anywhere else. Yay! My treatment will for sure consist of radiation and tamoxifen for 2 years and then another drug for 3 more years. I can also have chemo if I choose because I had 1/3 SN involved. He said it will be of some medical benefit to me although will not change the numbers in a big way. He is calling me on Friday to get my decision. If I choose to have chemo it will be 4 treatments, one every three weeks. Then we would follow with the rads and tamoxifen. I have thought about it a lot and think I will have the chemo. Even if it only changes the numbers a bit, to me it is worth it to improve the odds in my favour. I want to be able to feel that I did everything I could and used every tool I was offered to beat this. So I expect once I give him my decision I will be starting chemo in 1 to 2 weeks.
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Rmdevillers...my diagnosis is similar to yours and I am very glad I got chemotherapy...actually had 6tx...it's done and no problems... I have chosen mx over rads and don't need rads with this decision.
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Sandy,
Yes, there can be cancer further down the node chain. (That's why they want to take them out...because the possibility is there.) They took 4 of my nodes, and the two closest to the tumor had the smaller amount of cancer, the two after those were FULL. They wanted to go back in and take more since the last two of the 4 were full, but I refused and chose to get rads to the area instead. (A study came out last Sept. that showed rads to the axilla is just as effective as surgery in removing/killing cancer. And my RO gave me a 5% LIFETIME LE risk with rads as opposed to a possible 60% 10 years out that the BS gave me.)
Hope that helps
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Hi All ---
Found out today my margins ARE indeed clear from my re-excision!!!..WHEW!! Thank you God! I will start Chemo on August 10th and radiation afterwards. I'm thinking of doing rads to the axilla, superclavicular and mammosite as well. The BS doesn't like that plan as he feels it can cause lymphadema and he said he may as well have done the axillary dissection if I go for that type of rad treatment, but either way, I just want to do what I can to keep the cancer at bay, in the event there is cancer down the node chain.
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I agree with you crystal... if I had done rads and not teh mastectomy... then I would have done all three as well.
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Bdavis -- are you back at home? I hope your flight was uneventful and you are glad to be back at your own comfy home. I hope you are feeling better too. I say my Onc today and he thinks I do have that reflux from the surgery that swelled my tongue and throat and also lymphadenitis (mild lymph infection) in my face and neck. He said it should resolve on its own and I can start Chemo next Wednesday. I saw the Onc, a Rad dr and the Surgeon all in one shot today UNANNOUNCED! They took time to see me as I was concerned about my throat. It was amazing to have such a caring team.
I also got my Oncotype score which was 16. I believe that's low -- but I'm node-positive, so I'd resort to chemo anyway.
Hugs,
Chrys
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Good luck with chemo, Chrys23. I wish you a side-effect free experience. I did 4 X TC with only a few problems.
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Just as an aside, my SNB and needle aspiration of an elarged node were negative for mets. My + node was on the "second level of nodes" and was found during ALND during bilateral masts.
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Chrys,
Congrats on the clear margins!
The odds of getting LE with rads are much lower than with axilla dissection .... like I've stated before with rads it is somewhere around 5% lifetime risk....axilla is much higher (up to 60% 10 years out) in some of the studies.
So if your BS said he "may as well have done the dissection" he doesn't know the rads statistics for LE (my BS didn't know them either until my RO told him.)...
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TonLee: Thanks for the information on the Rads -- it's helpful! So hard to always know the right decisions with all of this, isn't it?
Elizabeth1889: Thank you! I hope the chemo has limited SE's for me. I'm a bit nervous as I am VERY sensitive to medicinces (as evidenced by my throat issue after surgery/anethesia).
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CRYSTAL...Back home... had a screaming child behind me on the plane, so that was a bummer... my mission today is to find a cleaning lady so that my home can be my comfy home... currently I am surrounded by dust... yuck.
I am glad you can start chemo... I know it concerned you.0 -
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Cp4,
That is the Z0011 study that came out at the consensus conference last September. It is the study I used to make my decision not to have ALND.
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Hello, I was just diagnosed with stage II invasive lobular carcinoma. Don't know lymph involvement yet. /doc says will be stage I if no lymph involvement. Does anyone know what is the likelyhood of it metastasizing to the skull this early? There was a spot on my skull from the bone scan. Doc does not think that it is. They asked about any injuries I might have had. I did hit my head when I passed out about 6 years ago. Will like some feedback please.
Glenna
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glenna.. I am confused... If you were diagnosed with stage 2 ILC, are they assuming you have nodes involved?? Most doctors won't even give a scan for stage 1 or 2 because there are false positives and there can be risks with the extra scans... I certainly wouldn't worry about scalp mets yet.
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Betsy.... They did a fine needle asp, and did not get enough cells to call it, so they did it a second time (within a 30 min period), so I'm waiting for the results. They said I had 4 swollen nodes, and they tried from the most prominent one. I meet with the surgeon on Monday.
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