Stage II w/Lymph Node Involvement
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Thanks for your posts. I've been reading everything I can about postive nodes and possible treatment and it all makes my head spin. I am so afraid of making the wrong decision, and of course my appointment with the oncologist isn't for two weeks - another 14 days of worry and stress.
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Chrs,
My RO showed me statistics on the risk of LE with rads to the axilla. It was 5-6% lifetime risk (higher with boosts to that area but not a whole lot) as opposed to the 40-60% chance of LE (ten years out) with AND. I met with him before my MX and that was one of the reasons I refused the axilla dissection. I'd rather risk 5% than anything higher. You might want to ask your RO about that....
BDavis,
I'm not condescending.
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I was told 4-5% with RADS by RO. 30% "lifetime" risk with ALND by BS. It was enough difference for me. I start RADS soon. Both BS & RO emphasize quality of life. My MO thought I should get the ALND. I wasn't shown any statistics, probably should have asked.
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Coral,
That's great they focus on quality of life. I think that is a huge factor. Not all MOs agree on QOL...for some anything short of death is acceptable ... heh.
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I had AND and I'm having rads to the axilla. I'm doomed.
I was warned today to protect my arm and watch how much working I do with it over the next couple months. Hmmm... It kinda freaked me out since I don't see anyone else on BCO being told that when in rads.
Maybe I am doomed. lol
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You're not doomed Pek. Not by a long shot.
The %'s for AND and LE seem to fluctuate...but the radiating the axilla instead of AND just started occuring more consistently after the San Antonio Conference Sept 2010. My RO said it usually takes about 3 years for something like that to change nationwide. However, coupled with the latest study (last month) that will likely be cut down to half or less.
Lots of women have had both and don't have LE. My RO actually told me that if you aren't having LE by the time you get to rads, then you will not have a significant chance of getting it through rads. He said boosts to the axilla are what seem to cause LE...and even then only about 5% of the time.
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Hi Ladies.....
This is me 13 months out from radiation. I had the full treatment and cycled throughout. I posted this elsewhere, but you need to know that this was Mile 196 of 204 of the Seattle-to-Portland.
This is #5 of 5. I even did it last year, but have to admit I was a lot more tired as w/i six weeks of finishing radiation. - Claire
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Awesome, Claire.
And BTW, I work for the company that takes those race pics. I worked data entry for your race's pictures! (Identifying racers by their bib numbers.)TONLEE - Well that is reassuring news. I've had no signs of LE up to this point. My RO is an older "fatherly figure" guy. I actually thought he might hug me before I left the office today. Super nice guy. He's probably just being overcautious - and that's fine with me. I know there is risk of LE which would suck, but I think having cancer progression would suck more. But I hope I don't have to deal with either - EVER. Thanks for the info.
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pejkug3, The day I got my tattoos, the nurse measured my arms in 2 places, gave me info on a LE class, the names/contact info of the 2 LE specialists in town & a bit of written info on it. So,I guess it's a real possibility for me. Still haven't started RADs yet.......
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Hey everyone. I had my lumpectomy on May 31st. At the time of surgery they thought it was Stage 1 and strongly believed that it had not spread to the nodes. My Surgeon suggested that I would be following up the surgery with radiation because of the new study that has been the source of much discussion. He said that the study showed that the survival rate for women who had a lumpectomy and radiation was the same as women who have a mastectomy. I also had 3 sentinel nodes removed. When the final path report came back 1/3 were positive. I had the choice to go back in and remove more nodes; however he said he took my case to the provincial panel and they recommended that I do not have the additional surgery because I would have to go through surgery again and due to the increased risk of LE with the removal of more nodes. Once again he said that the latest studies show that the survival rate for women who have the additional surgery and those who do not, but have radiation are the same. So I have chosen to not have the additional surgery and to go with the radiation. Also because 1 node was involved it is most likely the ONC will want to add chemo to my treatment now. I see the ONC next Tuesday and will find out the details at that time. I am also having a CAT scan and a bone scan this week. Not sure if this adds any clarification to the discussion or not, but it seems to me that the course of treatment recommended for me is right in line with the new study results.
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Thanks Toni & Cora --
Cora: Are you doing RADS to the axilla? I couldn't tell by your post.
I will definately talk to the RO closer to when I start Chemo (probably mid-August); I've gotta get thru this 2nd surgery next Thursday. Praying and Hoping for clear margins!!!
I think I worry that since they are NOT doing the AND; that there could possibly be cancer in the nodes and I don't even know it... I would be open to radiating the axilla, but at 4mos down the line after chemo; is that too late?! So many decisions.....and never knowing which is the right thing to do.
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Rmdevillers...our diagnosis are identical right now, except I under went the AND today for additional lymph nodes.... I also had 1/3 nodes comeback positive back in June after my BMX...
Claire, that's pretty awesome, that picture of you racing!!!! You should be so proud of yourself!!!
Pej....you aren't doomed!!! If you are so am I....i just had an AND this morning and if anymore nodes come back positive than it's RADS city for me too.....ugh!!
Chrys, I worry everyday that I'm not doing the right thing for me too...I seem to rely on my doctors for most hard decisions b/c it's all such a numbers game??? I look at all the stats and freak out, than I realize those are just numbers based on random people and NOT me.....so who knows. I think if you're going to do radiation, if there are positive nodes in there, the radiation and chemo are going to get it!!!!!! At least that's what my doctors claim?? That my treatments are my "life insurance" at this point??0 -
Madismommy -- I like that: "Life Insurance"! We can only hope that's true, right?! What other choice do we have
Your AND was today?! How are you feeling hon? Are you doing alright?
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Doing ok, VERY sore....and I have another drain on that side, BUMMER!!! Drains are the worst I think....I'm going to calll my PS for removal the second I realize it's ready to come out!
I also had my chemo port put in my neck....that's pretty darn sore too!! The incision is a lot bigger than I had anticipated.... But the port sits in my neck pretty good so at least it's not totally sticking out!!!0 -
hi crystal... radiation has a window of opportunity... you can't have radiation whenever, so 4 months post chemo is not an option... they would like you to start about a month after.
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Hi B!
I meant, 4months for Chemo -- which in essence is having radiation about 5months from now.
That's what I meant about 'waiting 4 months'; I meant after Chemo is over with
Just seems like a looong time since the nodes 'could' have cancer in them and while you're getting chemo, you are not radiating the lymphs at that point.
**Madismommy: I hope the soreness gets better for you in both your arm and in the port. I won't be having a port put in -- the Onc didn't want me to get an infection and they had a Chemo nurse come look at my veins during my consult; they are going to try to go the IV route, which is fine by me.
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CHrys,
It is standard practice for most people to get rads after chemo....
While many Onc/ROs like you to start radiation after chemo....it is not set in stone. Many women who have reconstruction have to post-pone Rads while getting fills (I did this)...I waited almost 12 weeks, 3 months after chemo to have rads...all with the blessing of the RO.
Here's hoping the rest of your nodes were negative!
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RMDev,
Thanks. I appreciate the input.
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Madismommy: I am thinking of you today and hope the soreness goes away soon. My surgery is still fresh enough in my mind that I am feeling twinges for you.
Chrys: I am having my rads after chemo, probably 4 months of chemo and then rads.
TonLee: No problem.
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Chrys - Lots of women who have positive nodes by scan before neoadjuvant chemo have no positive nodes by the time of surgery. Hopefully, there's no cancer in any of your nodes now but if there is the chemo will attack it too. It's hard not to worry about every step but ultimately we only have so much control! I had a surgery between chemo and radiation to remove a lipoma that was in the radiation field. So, I had 7 weeks between the end of chemo and radiation. I was worried about the delay. My RO told me that she likes to start radiation within 6 months of surgery whenever possible but I think that's just a guide.
Madismommy - Ugh, drains are the pits. I hope that you're drainage slows down quickly and that you can shed your drain in a few days. Hoping that you get positive news about the additional nodes too.
rmdevillers - Sounds like you have a great team caring for you. I hope that you have a plan in place soon and that you find your treatments manageable.
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Just throwing this out there. I got two opinions on my treatment when I was diagnosed. Both said that even with a BMX, rads would be recommended for me if nodes were involved. I hoped among all hopes that my nodes were negative, but they weren't. I already have a consult scheduled with an RO on August 2nd and I don't even have a finalized date for starting chemo. I guess they are serious about those rads! Blah. That will be fabulous for my exchange surgery sometime in 2012.
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Special K, here is the link to BCO's research news on this topic. There was a banner.
http://www.breastcancer.org/treatment/radiation/new_research/20110606.jsp
I was offered radiation to the regional nodes last year but after careful consideration refused it. I knew about the ongoing study in Ontario and I asked my RO if there was any indication at that time how the results were going. No such luck. I sort of gulped when I did find out last month, but looking back it think it'll be ok. The idea that I might avoid radiation to the regional nodes was one of the reasons I accepted chemo. I only had one positive node out of fifteen taken.
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Kathy44 - thanks for the link and your thoughts. I did ask my BS and MO within the last 2 weeks about rads and both said not necessary. I am 5 weeks PFC so I would still fall into an acceptable time frame to start, but... I had a 20 cell cluster in SNB and 1 additional 6 mm node found at the AND. I have had aggressive chemo, still on Herceptin and will start an AI after surgery next week. Hope that is enough.
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Kasi,
I have a TE and had rads over top of it. If you take care of your skin during tx, you will likely be fine. I thought it was the end of my TE...I'm fair skinned. But nope. I burned in one spot, but am almost entirely healed.
SpecialK,
I worry that with triple positive BOTH your BS and MO said no rads. Can you get a second RO opinion?
I go to two BC groups, one for older women, one for younger. Some receive txs in Northern Kentucky, and most of the rest here in Ohio. Everyone in active tx right now with a single positive lymph has had their treatment plan changed to reflect the results of the new study. It's been the hot topic of conversation in our meetings (as you can imagine).
About 6 of those women are HER2+...and each said they were told that since HER2+ likes to "travel" a single positive lymph will now mean rads (if they choose it).
I personally don't think we should be making such huge distinctions between macro/micro mets. Cancer is cancer. Spread is spread. And I had 4 lymphs taken, the first two, closest to the the tumor, were the smallest...the 3rd and 4th were full.
The whole point of lymph dissection is to see if its traveled. It either has, or hasn't. It only takes a single isolated tumor cell to become mets. And ITCs aren't even considered "positive" when determining stage. WT??? I don't understand that. Alone it can give us cancer, but it "doesn't count." Drives me nutty.
Anyway, I know you're a smart savy woman and will make sure you get the best care. I just worry about you...it's a triple positive thing
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ToniLee -- you are so right about making distinctions between micro/macro nets. If I'm remembering correctly, the cancer in my SN was in milimeters, but both my BS and Onc said "doesn't really matter the size, the cancer was there". I'm in agreement that spread is spread.....regardless of the size.
Best,
Chrys
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TonLee - I have never even seen an RO to have a first opinion. My BS said from the outset I didn't require rads. I have concerns about this subject, which is why I have posted on this thread, and also why I asked both the BS and MO so recently about rads yet again. I need to ask the MO again and reference the ASCO study - he is well aware of how much I read and discuss because he has answered all my many questions. I worry about the triple positive aspect of this as well because I don't want to be left kicking myself for not taking every opportunity to negate a recurrence or spread. And thanks for worrying about me
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Special K -- Am I understanding that your BS is making the determination for no Rads? It's good that you are asking questions and like you stated; since you are Triple +, you want to make sure you ARE taking every opportunity to combat this. This is YOUR life, not your doctors, so get every opinion you can (which may include seeing a Radiologist) and then make the decision that is best for YOU. 0
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Chrys23 - Both the MO and BS have said within the last 3 weeks that rads are not necessary due to BMX, AND, TCH chemo, continuing Herceptin and an AI.
Operating from within my insurance requires a referral to a RO, either from my primary care provider, BS or MO also. I can't just decide to go on my own unless I want to pay for it myself.
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SpecialK -- I hear ya; thanks for explaining. So, I guess the questions still remains -- are you comfortable with not doing RADS? Do you think they are covering all the bases? Seems so (but I'm no doctor)
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Chrys23 - I am not sure how I feel about it! Not that I want even more treatment, just uneasy if the signs are pointing to a potential benefit, you know?
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