Stage II w/Lymph Node Involvement
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I was was reading a little last night, and the Doctor might do something since you had the BMX. I didn't realize you had that done, whereas I had just a lumpectomy. I would think that somethig would have been said already if they needed to do something about it.0 -
Yes, the so-called "defect" is a side effect of SSM. It leaves indents that are noticeable. I will have fat grafting done during my exchange to fill in the valleys. It's just that it seems like it's more noticeable now than ever and for some strange reason, the bump is higher (bigger) and others have noticed, too (my spouse, and PT). I guess I can chalk it up to that umbrella term "post-operative changes" that I hear a lot. They said just keep an eye on it.
I'm just sooo happy they didn't find any cancer!
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I want to resurrect this thread as I have found a lot of valuable information here. Hope you all will update us newbies and not-so-newbies on your progress.
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Good idea, Revelle! Thank you.
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Just wondering if anyone knows what the determination of radiation is? I go tomorrow for a consult, maybe finishing chemo this Thursday, or may have two more treatments added if MO thinks it will benefit and there will be no long term bad side effects from it. It seems as though some with node positive have radiation and some don't. My breast surgeon said all cancer was removed.. I realize that there could be stray cells out there and thats why chemo, but what determines radiation? Is it how many nodes ? Or doesn't it matter. Worried as I have TE in place and going for Physical Therapy to swelling and cording.. no one has diagnosed me with LE yet... but my TE seems to feel swollen and the area under my arm feels like jiggly fat... don't know if thats LE, and I have an area on by back close to the armpit which seems like its a little swollen. Don't want radiation to make anything worse or prevent implants. I cannot do a flap reconstruction, I am too afraid of that and the recovery. Also did most of you with positive nodes get sent for scans prior to chemo? I didn't and am worried that I should have been. MO said it would be too early for scans to see anything. Sorry for so many questions, but just found this topic!!! Any help or advice would be greatly appreciated!!!
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Thinkingpositive - A recent published study showed that there is a benefit to radiation after mastectomy in women who have 1-3 positive nodes. The link to the synopsis of the study on breastcancer.org is copied below. Obviously, you should speak with your MO and RO to determine what the risks and benefits are for you.
http://www.breastcancer.org/research-news/20140326
If you are not seeing a certified lymphedema therapist for your therapy, I would recommend that you make an appointment wiith one. You can find more information regarding lymphedema therapy and cording at the Lymphedema Step up-Speak out website. There's tons of good information there!
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toomuch..thank you for responding. I have seen a LE Physician for an assessment and am now going to certified LE therapist for the cording issue and MLD massage in the event that it is. Have not been diagnosed yet. Does not seem that the PT is really doing anything, the cording is still there although it is may only 4 sessions I have gone so far. The swelliing in the areas are still there as well. I see my PS tomorrow so I will see what he says. All along BS, PS and MO have said no its not lymphedema...but its now a little over 12 weeks since mastectomy, I am wondering if it could still be post surgical swelling, fat tissue leftover, I do have larger breasts.. in between c-d cup.. or infact LE. I will go to you sites for info. Thanks again.
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thinking, I have the same puffy feeling in my back/armpit area and it's been over a year for me. I also was told it's not LE. I found massage therapy to be better than PT. I had one positive node, I was told barely positive, 11 others clean. I had a 14 oncotype, KI 67 of a 3, my MO said no chemo. Four ROs reviewed my case, two said to get rads, two said no. I didn't get it. My MO thought I made the right choice. Ki
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I sought out a 2nd opinion regarding whether or not to do rads. My ROs mentioned that the study above was based on data before the days of sentinel node biopsies. My cancer clinic has not changed their stance on radiation for 1-3 nodes. But of course everyone's case is different. I had Oncotype score of 10, ki-7 .05%. You could always get a second opinion if you are undecided. I decided not to do rads especially since after I persisted they said, you can do it if it makes you feel better. Sort of a "will you be able to sleep at night" factor.
As for the LE, I had many docs and therapists say I didn't have it, but when I finally found a LE therapist, she said I did. I knew something was wrong, but didn't get good care at first, so it was several months after my BMX that I was treated for 0-1 stage LE. I had a little bit of swelling, but my therapist treated me with massage and wrapping to bring it down. There's no such thing as a little bit of LE. You either have it, or you don't. Even if it's a little bit, it needs to be treated by an LE therapist. I think this is an area that is downplayed and undertreated by surgeons and MO's. It's just not a priority with them. I went through 3 different PTs and 2 different clinics before I finally found someone who could help me.
Best of luck to you!
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ThinkingPositive, I believe one of the determinants regarding radiation therapy is whether or not there were clear margins when the tumor(s) was removed. If you had done lumpectomy then you would likely have radiation, but after mastectomy it is different. I had bilateral mastectomy, my largest tumor was 1.4 cm, and my margins were clear. No radiation was recommended, but then I ended up with unexpected chemo.
Good Luck!
Martha
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RhodyMMM
Same here. My tumor was 1.1cm and had 10mm clean margins.. also had dcis in a different area. Thats probably where the IDC came from. Did they tell you on path report how much was in each of your nodes. Mine was 8mm and the radiologist is saying that is small. Since so many negative thats a good sign. Just don't like having to make these decisions.
Stenokim...did they tell you on your path report how big the cancer was in you nodes...or just barely positive.
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thinking positive, path report said 3 mm and MO is the one that said that number is barely positive.
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Stenokim..mine was 8mm and RO said that was a small cancer in the node as well. I thought it was large..but I guess they know better than me. I kept thinking is she reading the same pathology report as me??
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ThinkingPositive, I had DCIS in the left, and IDC in the right so went for the BMX. Two sentinel nodes on the right were positive and she removed 16 more lymph nodes on the right and they were all negative. The two sentinel nodes on the left were negative. Personally, I would have done whatever the specialists recommended. I am fortunate that my docs are within a medical center that is world-renowned for cancer treatment (one of the top 5 in the country); and I am a former oncology nurse and know too much for my own good
. The RO said no radiation was necessary, he gave his reasons (the BMX, clear margins, etc.) and I was comfortable with that.0 -
Thanks RhodyMMM...your info helps me. I see you did ACT...I opted for TC...due to the heart problems with ACT. You always wonder whether you make the right decisions, its hard when they give you choices..instead of just telling you that you need to do this. Its been a tough time for me as I am sure its tough for everyone out there that is going through this.
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Hi everyone. I am joining the stage 2 club. My diagnoses is in my signature. Lots of good info in this thread!
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Cross posted in another Stage 2, then I found the node positive forum:
I had my last chemo yesterday. I have spent 2 days crying because I'm terrified they have missed something. I had a lot of back pain with treatment 3. I told the onco and he wasn't worried. We did 4 yesterday and he said we will follow up in 5 weeks and that the pain should abate as the chemo runs it's course. Did anyone else have a lot of back pain with chemo? I do neulasta too. Yes I'm taking Claritin. Just trying to calm my self down a bit. The 2 positive nodes are throwing me a bit. He also told me that I had IDC and small amount of ILC. Which he said changes nothing. I just don't even know what to think. I thought I was only IDC. Can any of you offer some words of encouragement? With my hormones being shut off are these feelings of being sad and over whelmed normal? The pain? The nodes scaring me. Are any of you just as worried about the posivite nodes and figuring out exactly what that means. Am I doomed? Just any thought are welcome. Thank you! Also I had a 2mm in one node and a 4mm in the other. Are those huge? The more questions I ask the more my onco sites statistics. I am just wondering, how big are those considered for being in the nodes?
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U4iachic, I worry the same as you. I had one only one node positive, but it was 8mm with extracapsular extension. 16 nodes negative. IDC was 11mm with LVI and it was a grade 3. I had a mastectomy with 10 mm clean margins. So yes I feel the same as you. I also did Taxotere and Cytoxan Regimen as opposed to AC+T. (I have really high blood pressure so I didn't want any damage to heart). When I went for consult with RO...she told me my cancer was small.. I asked what pathology report was she reading. To me its big, but she seemed to think it can be a lot larger and mine was small. She told me I had a very good surgery that removed everything with clean margins.. and that 16 nodes were negative which was really good. I am not sure whether she was just trying to make me feel better.. but she did say that she was not recommending that I needed to have radiation, I was in a gray zone. She also told me if I lived out West TC would be the treatment that they would have given me. I was given a choice TC or ACT.. how are we able to make the choice?? I also have back / shoulder pain, I am assuming its from the tissue expander and the way I hold myself. Its not constant. It does go away. They say to worry when the pain is constant. So I try not to worry. I finished chemo on Feb 5th and worry as you do. I started Femara three weeks later and My MO told me that was the biggest bang for my buck. What chemo are you on? Suggestion is to see a counselor at the cancer center, I did and that helped me get through things. I have been told it gets easier each day...
Did your MO give you percentages at all? I know he kept telling me not to focus on the node involvement, the grade, the lvi, or the ecn. Its easy for them to say. He also told me to stay of Dr. Google... which I have definitely taken that advice.. no longer searching for answers that I want to hear... just this site and that's about it. Everyone here is so helpful.
Good luck with your treatments and try to stay Positive!!! You will do fine!!
Karen
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The only percentage he gave me was I have a 23% TC recurrence rate or 20% ACT. It all seemed exceptionally high to me. He also said 85-90% "cure" rate. Although he didn't use the word cure. He felt like I was on the higher end of that. My tumor was under my nipple so after my mastectomy my margins were 3cm or greater from the chest wall. I will have 28 treatments of rads. He felt with the positive nodes I needed radiation.
I am staying way off Dr. Google, he already scared the hell out of me enough. That's why I'm convinced these pains are more than just treatment related. This is all so scary. Thank you again for responding to me. I haven't had too much luck initially on these boards. Guess it took a little while for me to find a home.
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U4 - here are my thoughts - your risk of recurrence is either 0% or 100%. Your doctors can give your percentages and you can worry about whether nodes, or tumor type or size factors in, but honestly any percentages given offer no concrete answers. There are women on these boards who have a worse prognosis and don't recur, and there are others with a better one and they do. You will either recur, or you wont. If you have done the proper recommended treatment you just have to hope for the best and go on living your life. You had an aggressive surgery, you did chemo, your cancerous nodes were removed (2mm and 4mm are relatively small), you are having rads, and I assume you will be treated with hormonal therapy. If you look at the sig lines for others who post on these boards you will see many with similar stats to yours that are doing just fine. Worrying about whether you will recur is a waste of your precious time, and it will rob you of happiness now. You can't change the past and you can't control the future - so control the things you can - what you eat, whether you exercise, how you occupy your time, and who you spend that time with. I realize that it is easier to say than to do, but it really is important not to lose any more ground to cancer - it has taken enough from you already! Wishing you the best!
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Great advice, SpecialK! I wholeheartedly agree. It takes awhile to get to that place. We all have to work through our fears the best way we can. But the sooner you do it, the better off you'll be. Ruminating about it all is torturous. I speak from experience. I"m a great one at torturing myself. But time helps and I'm getting better at being good to myself. Good luck to you U4!
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Hi all I would like to join this thread. Trying to stay positive.
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I also was a stage 2a I lymph node out of 2 was positive I had a double mastectomy with expanded started on Tami and now on radiation therapy x 25 doses my oncologist said I did not need to take chemo
I had multiple nodule on my breast about 6 of them though they said they were small I am just so scared that the Tamil alone with radiation may not be enough and i so concerned and am just so scared that this may not be enough my DR did a ct scan of the abdomen and saw some 2 spots on my liver but he said they were not lesions but we're hemengioma's now my legs are swelling since after surgery 3 months ago I am not sure if this is not because of those spots on my liver
I am so worried please help me with ideas I know I put a lot of questions here but I have a lot of unanswered questions let me know if you have any answers for me
thanks for being just here to support each other
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I am new to the forum but have benefited from reading the comments. "SpecialK" yours was the most inspiring and has helped me put things in perspective. I am IIa with 1/3 positive nodes and had a lumpectomy. Other than the actual cancer diagnosis and fear of dying, the hardest part of this whole thing has been making all the decisions about what type of treatment to get. Every doctor has a different opinion and every chart/graph/study shows a different outcome. My Onco score was an 18 which showed there was no statistical benefit of chemo+ hormone over hormone alone so after many long, agonizing discussions, my husband and I decided NO to chemo because the benefits did not seem to outweigh the risks. I am finishing up radiation now and am on hormonal therapy but found myself worrying constantly...did we make the right decisions, has the cancer spread, will it come back, how will I know?? The worrying was going to kill me quicker than the cancer! Then I read your comment - the risk of recurrence is either 0 or 100% - and I realized that was how I would go forward with my life. It will either come back or not and as long as I lead a healthy lifestyle and get regular check ups, I will be doing all I can in my control to affect that. The rest is up to fate and I cannot spend my days and nights worrying about that. We made the best decisions we could with the information we had and have promised each other we would not look back and second guess ourselves.
So ....thank you!
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badyear - yay! I am so glad what I said resonated with you. Some days you may be better at this than others, as it is a work in progress, but for me, it was the way forward.
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badyear...I know the feeling. I struggle everyday with did I make the right choices, will it come back..etc. Its not easy.. My MO did not send my pathology for oncotype..he said it would take 3 weeks and probably would come back high. So I had chemo, which again I had to make a choice of which treatment, two were given to me. Had I known more and had more time to research, kept going back and forth. I have almost the same stats as you, only grade 3. I had a high Ki 67 - 28%,, not exactly sure what that means compared to the grade. Since I had chemo after my mastectomy I keep thinking about all the time between being diagnosed and the mastectomy, I keep wondering if the cancer was that bad the whole time..and do I need to worry more since it was
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Has anyone had experience with chemo that does not make your hair fall out? One doctor told me CMF (Cyclophosphamide, methotrexate, Fluorouracil) will cause hair thinning and in rare cases, hair loss, but another doctor told me that it does cause hair loss so I don't know which is true. Also, I have been reading about something called Liquid Biopsies (from a company called Biocept in San Diego, CA) that help detect the reappearance of cancer earlier and more accurately than a tissue biopsy. Has anyone heard of or had this done?
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badyear - check on the CMF thread linked below - those ladies did that chemo and could tell you about the degree of hair loss. My understanding is that your hair can thin, but not all fall out, but I don't know if that is universally true.
https://community.breastcancer.org/forum/6/topic/243424?page=258#post_4361764
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hello sweetie, i too had lymph involvement, and am by Grace of GOD a 21 yr Survivor, 3 nodes involved, i did mastectomy with reconstruction, and my body rejected the implant and it hardened, rush to hospital and removed, and have been wearing prothesis since, found lump while i was planning my wedding, to my now husband. We are all in my pryers daily. msphil (idc,stage 2, 3 nodes, L mast, chemo and rads and 5 yrs on tamoxifen)0 -
Bump, this topic is very inspiring for stage 2 ladies, please stop by and giveus newbies some hope🙏
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