Lumpectomy Lounge....let's talk!
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Good advice Hopeful. It may be worth asking if the bs proposes to do an axillary clearance if positive nodes are found. This can have severe effects on arm mobility for some time and if possible should be resisted. I did as I could not see that it would do anything more than confirm that the cancer had spread and treatment would be just the same. I don't think my surgeon knew anything much about ARM - certainly did not discuss it.
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But, no wires for me
BS is using an ultrasound, thankfully0 -
Hopeful, Awesome response! Thanks especially for explaining why we had such a response to Shaz's news about the possibility of more nodes being removed. My chemo brain doesn't work as well as it used to. I thought I posted here about my lovely surgery experience, but maybe it was only on the July Surgery Sisters topic.
Oceangirl, I had a lot of breast tissue removed during my surgery.... one area was similar in size to the amount of tissue you had removed. The cancer area was about 1cm, but I had an area of concern in another part of the breast. I had both areas removed. The PS rearranged the remaining breast tissue, leaving me with a smaller, higher breast. He operated on the other non-cancer breast to make it match. The incisions are similar to a breast lift/reduction. I had an incredible amount of swelling and bleeding/bruising. I was very sore and it was a long recovery. (Peggy was here and I'm sure she remembers.) Icing was discouraged in my case. I was told to apply heat. But be careful because if you are numb, you won't realize if it's too hot, causing further damage. Some lumpy surgery is small, with a quick recovery. Others are much more involved. Give yourself time. However, if you think you have an infection, call your surgeon right away. They work for you! Also, do your arm exercises to improve mobility and decrease your chance of lymphedema. Here's a link for exercises: http://www.breastcancer.org/tips/exercise/treatment/surgery
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I had the ARM (Axillary Reverse Mapping) procedure last week. The radioactive isotope was injected in my breast the day before surgery to be picked up by the lymphatic system that drains the breast. Blue dye was injected in my arm (about halfway between arm pit and elbow) right before surgery, after I was asleep, to be picked up by the lymphatic system that drains the arm. The idea is the breast nodes will be radioactive and the arm nodes blue, so the surgeon can avoid the arm nodes. My doctor said it works about 70% of the time; in the remaining 30%, there is overlap between the two drainage systems and the radioactive nodes are also blue. I was lucky; no overlap and dr. is confident that taking two breast nodes doesn't increase my risk of lymphedema.
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Wow, there are SO many things to learn, and I really appreciate the patient explanations here of those who've been there before. Although I have so far dodged the node bullet, I am hoping for all of you who have had or will have that as part of your treatment, that you heal well and soon. As overwhelming an experience as this has been for me in the short time I've known I had BC, I am in awe of many of you who are dealing with so much more. Sending all healing thoughts to those in the midst of this very difficult journey.
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PoppyK, you have had such a challenging time. Even though our surgeries were the same day, you drew the short straw and needed chemo which certainly played into your recovery. I'm just happy that you're doing so well.
To those facing more lymph node removals, please do investigate ARM with your BS. It sounds like it could be a great option in some cases. And as mentioned previously, check and see if removing a ton of nodes is going to improve your outcome. A lot of things to consider when you are making your decisions. (We have so many decisions to make with so little hard information - it's awful!).
HUGS to everyone.
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Poppy - I didn't know you back in July; that was before this entered my life. I'll have to go find your story.
Kittybelle - thank you SO much for sharing your experience with ARM! It's really good to hear of this approach trickling out into the surgical community.
I hope it's entirely successful for you in terms of avoiding LE and further hope your nodes come back clear. Please keep us posted.
I'm very big on this issue of node removal as I had concerns about LE right from the start. I had 2 very highly regarded BS tell me flat out that traditional ALND was the only possible approach and that it was mandatory, given my positive node. The fact of the matter was that they hadn't invested in learning the technique. The 3rd surgeon (whom I should have seen in the first place) was the one who enlightened me and offered me alternatives. The moral of the story is that you cannot and must not quit seeking answers that work for YOU.
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I had an excision all biopsy/lumpectomy on Dec. 19th, wire guided I might add. Anyway, the surgeon took the first piece, and the calc. Weren't in there, so he went back and took the whole axillaury tail, still missed the calls.!!!! Had to wait until Xmas eve morning for them to tell me they missed them and took a large section of my breast!!! I am so frustrated......had an excision all because I have implants and the calcs were close to the chest wall, sandwiched in between on the upper quadrant of my left breast. Went to my Gino and he referred me to another breast clinic, now they are doing a stereotactic next Thursday after locating them on another mammo. This clinic says they will have no problem performing the stereotactic... I am angry they totally missed them on the excisional! Fine pleomorphic cluster, seems to be forming a linear pattern too! Birads 4b......I am scared
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Geez, Purple88 - I can't begin to imagine how frustrating that must be, which on top of your concern about the outcome is a tough combination. I'm so sorry you're going through all this. Please don't hesitate to come her and vent as much as you need to.
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That's terrible, Purple88. I can't begin to imagine how mad and frustrated you are. I hope that you've found the right place to be now. Please update your profile and make it public so we will know what you have had diagnosed and had done. That is such a big help when we can see that. HUGS!!!!!!!!
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Hi Shaz, I saw that you are deciding on lymph dissection or not? This is not done anymore I don't think, if you've had a lumpectomy and are getting radiation, because the radiation can take care of it. I would definitely definitely get a second and third opinion, preferably at a university hospital that is renowned. They will know what is best. You must live with healthy arms for a long long time so this is a very important decision. Best wishes!
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Here is the article about how dissection is not necessary anymore: http://ukhealthcare.uky.edu/Less-radical-breast-cancer-surgery-often-just-as-effective-study-shows/
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Oceangirl, next time you want to include a link, use the little link (paperclip like) icon above the reply box and then the link is active.
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Thanks everyone for your advice- I got a bra today so we'll see if that helps. I hate bras!! I've never found a comfortable one- I don't know how anyone finds a good one! But we'll see how it goes.
Poppy, I am so sorry. That happened to my sister too. They took out a lot of her breast and missed the spot. That is so awful. It just feels unfair. That is good that you are going to someone else. The local doctor did that to my sister. Then she went to the university hospital 1 1/2 hours from her and they seemed to know better what they were doing. I'm so sorry you had to go through this.
For my surgery they put the wires in and then it says in the surgery report that the nurse knocked one out! I can't believe no one told me about this. But I think the surgeon still managed to get the third spot even though he was going in blind for that one. I'm wondering if that's why he had to take so much extra tissue. This is no fun is it? But it will pass and we can do fun regular things with our time again soon.
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Hopeful, I LOVE what you said: you cannot and must not quit seeking answers that work for YOU.
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OceanGirl, that's something we have all learned, some the hard way, many of us learning from others' experiences. It has to feel right for us for it to be right. HUGS!!
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Sharing this... comment about positive nodes (Z11 trial)
http://www.clinicaloncology.com/ViewArticle.aspx?a...
I was able to get to this and view it without registering. I did a google search for an article posted at the HER2 site and found the link to the You Tube video there,,,, Here's my search.... Tolaney SM, et al "Adjuvant paclitaxel and trastuzumab for node-negative, HER2-positive breast cancer" N Engl J Med 2015; DOI: 10.1056/NEJMoa1406281.
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Here's the link working now.
You have to register for this site if you want to read the article.
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That links to an interview (video). (Registration for the site is easy.) The interview references the Z11 trial regarding positive sentinel nodes, which might be fairly easy to google for more details. Or just refer your BS to the study and sound like a know it all
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YOU GUYS ARE AMAZING
After reading your comments, then burying my head in the sand, I started to research and get pro active.
I've spoken to the cancer council and I'm waiting from a call from the breast care nurse at my cancer centre...but I'm now pretty certain I am having the reverse mapping!
Some of the readings from the links started bringing back some of the Drs words from yesterday. He said they would separate the lymph nodes from the arm and they wouldn't be removed. He said that the risk of lymphademia was very small! So I'm just waiting for a call back to confirm. The cancer council thought the treatment i was getting was correct. She said she would tell me if she thought there was a better alternative. She was very thorough and really made sure that I understood everything.
I just can't thank you all enough. I know we are all going through the same thing but different and for you all to voice your concerns has touched me so much. I'm so glad I have you all. I hope I can support you all equally as well. Much love and light xxx
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Shaz, I'm glad you found the responses helpful. We have all learned so much along the way. Everyone's situation is different, but we also have so much in common, too.
I know everything is new and sometimes shocking every step of the way. I'm so glad everyone has been here to help and support me during this journey.
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Shaz, that would be terrific if you are having ARM. There's no guarantee but it certainly decreases the chances of lymphedema. (Surgeons in this country always downplay the risk - perhaps they're a bit more aware of it in Australia.)
At any rate, I'm very glad you've got someone there to answer your questions in detail and respond to your concerns. It sounds as though she really cared about helping and that counts for a lot.
I hope you get your call soon, get encouraging information and can then get out and get some fresh air, some deep breaths and get yourself grounded again. This diagnosis knocks us for a loop just about every time we turn around; it's important to stay in touch with the people, activities and places that feed our spirits through all of this.
I'm glad you've had a more encouraging day, Shaz. I'm crossing my fingers that the worst is behind you.
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Thank you, I'm feeling much better as the day goes on, by Tuesday I'll be back in fighting mode. They are doing the ARM. The nurse checked the operations diary today! Yeah any positive info gives me a lift. I've been for a lovely walk along the cliff top by the beach. Just made me really appreciate what I do have. Hugs to you all xxx
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Purple88, I would be raging over this. I hope you are in good hands now, and that all will go well from here on out.
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Shaz
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Shaz that is great news!
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Purple, That sounds awful. The stereotactic biopsy should be much, much easier. Once they take the small core of tissue, they check it to make sure they got the calcifications. I hope the procedure goes smoothly and your results are B9.
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Hi everyone 😀 have just stumbled on this thread and so comforting reading through other peoples experiences.
I am 2 1/2 years after DX. Wire guided lumpectomy. Had to go from one hospital to another with wire in place !!
Home same day and very little discomfort even at sentinel node site.Wore soft bra day and night as have large boobs, DD. Still don't lift heavy weights with right arm, just to be on safe side.
Chemo, then 25 rads with some side effects.
To any of you ladies starting out on this journey good luck, you will be through it and getting on with life before you know it. I am !!
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Great to hear an upbeat story. Well done. I'm not through yet but getting there. Scousers are a tough old breed!!
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Gemma it's the draught from the Mersey Tunnel hardens us up 😁.
You will get through ((( hugs )))
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