Stage II w/Lymph Node Involvement
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I didn't want a full axilla dissection so I took rads (to the axilla). Glad I did it.
Having a MX doesn't automatically mean no rads....if the tumor is close to the skin, and they dissect the tissue after the MX and it's really close (as in my case .5 mm) then they will often recommend rads to the breast wall. Also, if it is sitting on or really close to the muscle they will often recommend rads.
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I had 1 positive sentinel node and the ALND. All the ALN were clear. I am also having the RADS to my clavicle and axillary lymph nodes. My RO thought it was worth it and that I was a low risk for LE based on only having 9 nodes removed and not being overweight.
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I start RADs soon, probably this week since I got my tats on Fri. MY left side with the positive node is getting radiated instead of ALND. I had a BMX & this side just took so much longer to heal & I still feel a sharp pain in my armpit from time to time. I'm more afraid of another surgery requiring a drain than I am of RADs. I guess that may change once I start RADs. My right side also had a tumor that showed some vascular/llymphatic invovement so I will be getting RADs to both sides. More than I bargained for, thinking that a BMX would mean no RADs. But for me, I feel I need to go with the newer data. My BS & RO are in agreement, the MO thinks otherwise.
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so many of us in the same boat. I also had ALND, not sure I would do it again, but it is nice to know the rest of the nodes were negative. Glad no Rads recommended and this is from 2 different cancer centers (but always wonder if I am missing something with new recommendations for Rads even with mastectomy). There is some comfort in knowing that things in the way of BC research improve everyday, even changes in the 8 months since my diagnosis. We can drive ourselves crazy second guessing every decision. I feel great, getting ready for surgery this week and hoping for a long and happy life.
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Bdavis....I'm having chemo but no Rads for now, hopefully this next batch of nodes come back clean or I'll end up with that too.... My lymph node that came back positive was .5 cm deposit on a 1.0 cm node....which is why the chemo I think??
My cancer was only in my left breast but because i was very small chested and it was right behind my nipple, had I done a lumpectomy I would have been pretty disfigured to achieve clean margins.... So my BS strongly suggested a mastectomy and than I chose to do a bilateral b/c I had calcifications in the right one and knew I'd be terrified forever that it was in that breast now had I left it.
Chrys...I think the chemo gets any cancerous cells left anywhere in our bodies so I'd say it'll attack anything left in additional lymph nodes, I think???? Otherwise I'm not sure I'd want to go thru the whole losing hair, chemo SE's if it won't.....I was told it's my "life insurance" after my surgery.... I'm banking on that..... :0)0 -
@Madismommy719: I hear ya....I "hope" the chemo will get anything left in the nodes that may be there. I think we all just want to do what we can to make sure the cancer cells are OUT of our system -- whether that be with total lymph node removal or chemo and rads. It's hard to say what the best practice is, since everyone has a different scenario. I will ask and double ask my Onc and surgeon. I'm really itching to hear what the outcome of the tumor board meeting will be tomorrow! Stay tuned.....
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madismommy719 - how long ago was your BMX? I did have one drain for the AND, they don't really bother me that much. I will warn you though - when they pull that one, make sure you take some pain meds BEFORE that appt. Just sayin...
We can all drive ourselves crazy wondering if we have made the right choices but it comes down to trust in our docs and their treatment plan, and a roll of the dice.
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Trusting our docs... well... all my docs recommended radiation after my lumpectomy snd chemo, said t was enough treatment... but I was worried it wasn't enough and asked for a MX instead. They all thought it was overkill, but all also said that if i chose that route I did not need radiation in addition... And that my .38mm micromet being so small... and my second node was actually attached to the first and was clean, they felt the chemo would kill any remaining cancer... my first BS said less than 1% chance I had any other positive nodes.. second BS said (after running some numbers thru a MSK umber cruncher) more like 6% chance, before chemo... but I had 6 rounds of chemo, so I am thinking i am taken care of.I even asked about radiation just to the nodal area... I was told no... i asked about eevated regional recurrance, if I do MX and no rads, I was told no... so based on the answers I got, the was no benefit for rads over mx except for the obvious (less invasive)
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bdavis - My thought process was the same as yours - go for the BMX, lump is not enough, skip the rads. I knew I would never relax if I didn't do the BMX, I just wanted them off!!! I was right to do it, DCIS and IDC in the right side, ALH and ADH in the left. The positive nodes were a surprise to all, but I am satisfied with the plan we followed. I think you will ultimately be happy with your decisions, I think you will feel relieved in the long run. Are you going to do tamox or an AI after your surgery as well?
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Specialk, my BMX was June 14 so almost a month ago. My two drains for my BMX were ok, one Hurt a lot the other not too bad. I hope this AND drain is short and sweet and out quick!!! One more obstacle in journey done!!! Baby steps for me.....
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My diagnosis is a bit misleading - I had AND of levels 1 &2 nodes...but there were only SIX total. Go figure. (But they were large, hardworking nodes.)
I'm also having rads to the supraclav and axilla. I can't help but wonder if it's overkill. What are they really irradiating? Just Level 3? And I'm overweight so I wonder if I'm just stacking up the reasons to develop LE (AND, rads and weight...).
Mammalou, you're in the heart of rads right now? Anyone else have AND and rads?
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Have you talked with your RO about the decrease in recurrence stats for your risk status? I had an intermediate risk because I had lymphatic invasion and some cancer was found in the lymphatics of my skin. I also had a fair amount of cancer in my lymph node. Because of all of this I was very comfortable with RADs to my supraclavical and axilla areas. The cancer running around my lymph system really had me scared. My RO discussed the new study regarding the benefits gained from RADs to the axilla. I am also in a surveillance study for LE, so that makes me feel like I am being watched.
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My RO isn't really a "Statistic Guy". When my DH asked for statistical risk, he just said it would be 0% or 100% for me. Yeah. Thanks.
But he did cite the study that has been referenced so many times on the boards about rads to the axilla with 1-3 positive nodes. My one node was positive - 3.0mm. NCCN has the cut-off for micromets at 2.0mm. So I just barely crossed the threshold. But my node was a whooping 5.7CM...HUGE! It was a workhorse for sure.
I hate the idea of LE but if it means that I get to be old with my husband and see my kids all grow up, I'll wear an dang LE sleeve. It's a reasonable trade if it comes down to that. (I'm 35 and have four kids I'd like to see become adults.)
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I was told that with a small number of nodes removed (my 9 was a small number), the risk of LE was lower, I had a frozen left shoulder going into this and I've had 2 lumpectomies and MX. I have limited movement, but I exercise my arm regularly. I feel like I am handling the RADS fine and I really don't think I'll get LE. My RO and BS also think I'll be ok. I'm just hoping.
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I've been told over and over that my risk of LE is small. My surgeon, my MO, my RO, my PCP...none of them are concerned at all.
I was told tha same thing about having a small number of nodes removed. I do wonder how it works when all you had was a small number though. I verified with my RO that I understood my surgeon's report correctly - only 6 nodes in all of levels 1&2. "Yep, that was the case", he said. He said that teh risk of LE goes up substantially with dissection of level 3.
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I don't understand the levels? It does seem to make since that if you only had 6 and they took them all, that your LE risk would go up. My surgeon injected the dye and left the nodes that drained the arm. Did you have that?
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No. I had complete dissection of the first two levels of nodes. Apparently, there are three levels.
I had the dye injected and that lit up the Sentinal Nodes (SN) . My surgeon took those and the quick test in surgery said I was node negative. But since the other nodes were so HUGE, he elected to take those as well. Both SN remained negative in complete pathology, but there was cancer in another node further down the chain. Wierd...
I've had some crazy thoughts about all this...what if...just, what if my immune system was attacking this cancer and it was on its way out of my body. Yeah, I know this line of thought isn't rational, but what is rational about cancer? What if my tiny 0.5cm cancer was actually being attacked by my immune system and my body was winning?
I was under a LOT of stress in the years before diagnosis. Our daughter had drown, our finances were a mess, we had twins....it was a LOT of stress. And I had been seriously depressed and not caring for myself at all.
In the year before diagnosis, I started taking care of myself, I had recovered from depression and we were moving on with life. I briefly entertained the thought that since I was giving my body the right tools to deal with illness, it was healing itself and that's why the cancer wasn't in the SN but further down the chain - it was on it's way out.
Crazy? Meh, who knows. All I know is that I'm doing everything I can and praying everyday that this is the only time I pass by this life event. I want God to use it in my life to make me more aware and more empathetic to those with physical problems. I certainly see things differently now. And that tiny needling Voice within me is what lead me to diagnosis to begin with.
I'm rambling...I should be sleeping.
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I don't think your thoughts are crazy at all. I'm sorry to hear about all that you have gone through. I have read that a lot of people discover they have cancer after stressful events. I also had worked really hard the year before my DX at be more healthy. BTW.. I have identical twin daughters. Mine are 24 though, but I remember how hard it was when they were little.
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TWins are fun, but a LOT of work. lol My boys are 7 now. Fraternal twins though. They couldn't be more different! (My older kids are 14 and 12.)
My next line of defense after rads is to work out and lose all my "grief weight". It's the next thing in my treatment plan.
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It sounds like you have a pretty full plate and I wish you luck. We just have to keep moving forward. I started walking right after chemo and it really feels good. I enjoy the reflection time too.
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Hello everyone, this is my first post. I wish I could say I am happy to be part of this group, unfortunately the circumstances which bring us all together is not one I would wish for any of us. Yet I can say that I was very happy to find the group, so thank you to all of you who participate here and provide us with a community to be a part of.
I had my lumpectomy on May 31st and had 3 SN removed. All of my health care providers believed that we caught everything early and that the chances of node involvement was slim. On July 6th I went for my post surgical visit and to get the results of the final pathology report. My margins were clean around the tumor, but to everyone's surprise I had a small (.5 cm) cancer on one of the SN. So I was upgraded from Stage 1 to Stage 2. Normally I enjoy upgrades, not so much in this case!!
My surgeon had taken my case to the provincial committee to get a collective opinion on whether to do the ALND and the opinion was that in my case that it was not the preferred option. They did not believe that putting me through another surgery and the potential risk of LE warrented it. Instead he told me that recent studies show that the survivial rate for women who have the ALND and those who do not and have radiation are the same. Radiation was always going to be part of my treatment plan so this decision didn't change that, except now they would be directly blasting the nodes so to speak. Also he was quite confident that my ONC would suggest we add chemo to my treatment. He guessed it would be 4 months of chemo. I see my ONC on July 19th for the first time and then I will know for sure what he has in mind for me.
I am reading reading through the posts and can relate to the worries and "freaking out" that people are experiencing. I think I go thorugh all of that on a daily basis. This whole thing really shakes your foundations and it is hard to trust that "everything will be OK". I try to stay in that positive state of mind as much as possible and I am sure that as the weeks go by we will help each other get through this.
Thank you again for being open and honest and for the willingness to share.
Rose Marie
PS I had some very weird tingling in my affected breast area and in the back of my arm. Also very sharp electric shock type feelings from time to time. Very annoying and uncomfortable, but they are getting less and less as time passes. I am now 6 weeks post surgery.
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Welcome Rose Marie....I too am sorry it's under these circumstances but glad you found us. This website has been a saving grace for me the last few months.
I also had a false negative SNB during my surgery and came back to have my drains removed only to find out I had 1 lymph node actually positive. I am going in for an ALND this Wednesday b/c radiation was not part of my treatment plan so we have to take more to determine if it's needed. I went from stage 0 DCIS when I went for my bilateral MX to stage 2 and I need chemo really quickly and without warning..... It's definitely overwhelming at times, to say the least!!!!
Hopefully once you meet with your onc you'll get lots of answers to any questions you still have!!!!
Hang in there!!!!!!0 -
mammalou-I read the study about injecting dye to find the nodes that drain the arm and eliminate them from the AND months after I had my surgery. I'm so glad that you had it done and that BS are putting it into practice. Hopefully, the radiation will not cause LE. You've certainly done everything that you can to protect yourself from it.
RoseMarie-the tingling that you're feeling in your breast and arm is likely from the sensory nerves that were cut regenerating. I can't remember how long those pains lasted for me but they did go away. I was grateful that the feeling in my breast and arm returned.
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Hi Rosemarie -- I hope you find this site, the wealth of information and the ladies welcoming! I welcome you as well.
I am 4 weeks out post surgery and I sometimes have the same sensations in my breast. I had a hematoma and though I had horrible swelling a few weeks back, it is decreasing now but 'hard' under the incision site, which is right behind my nipple. It's hard and scabby -- blech. Since I may have another surgery to get the DCIS cells, I hope they can cut thru the scar tissue. My tumor board review conference meeting is today and I'll be hearing the results of that meeting tomorrow in Philadelphia. Hopefully they will not go in to do the AND. Radiation was going to be in my treatment anyway as well and since I had cancer in the node, chemo too.
Keep posting and keep us posted!
Crystal
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With so many of you just starting down this path, I want to point out that you should expect to be fine at the other end.
I did a lumpectomy and radiation, plus more chemo than most of you will do. I exercised throughout active treatment.
I am dragging today, as just did an endurance cycling event over the weekend - Seattle-to-Portland. This was 200+ miles over 2 days. I am more fit than at any time during my life.
This is the fifth time I am done it, including w/i six weeks of finishing radiation. I had just enough energy last year, but no reserves. I think it was sheer will that got me through.
This year, ever so much easier. So while it takes work and discipline to get there, you really can be more than fine at the other end. Good luck. - Claire
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Thank you Clarie, you are a real inspiration for all of us!!!! I just want to make note that I got tired just reading about your cycling event and I have not even started chemo yet!!!!!!
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specialk... I am indeed getting tamox after the BMX...
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Thank you Claire! It's so good to hear good things 0
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bdavis - I believe that they will start me on Femara (I had a TAH/BSO 10 years ago) after my surgery next week. MO did not want to make things any more complicated by starting me prior. I think the BMX, chemo and AI will be the right combo for you and me both!
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specialK, what sugery are you having next week?? Are you having RADs?
I do believe that 5 years or more of an AI or tamoxifen are going to be what makes the most difference for us girls long term.
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