Lumpectomy Lounge....let's talk!
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Hey Tarot,
We can swap stories, LOL. I will be sure to get on line tomorrow evening to share. All the best!.
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Hi! I'm new here, but was diagnosed on December 2nd. Thank you for sharing your stories, they have helped me feel more confident on the tx I chose. I had a lumpectomy on January 7th, did not see the doctor after the surgery but she talked to my husband. Of course, he didn't remember everything she told him. All he remember is her saying that everything went well and the nodes were negative. I received a call the same day from the surgery to go see the RO the next morning. She was explaining about the localized radiation treatment, when the pathology report came in. They found microscopic cells, <2mm on one node and she said 2 cells on a second node. My BS sent for the Oncotype dx test. Today is my first appointment with the oncologist and we'll discuss these results and the treatment to follow. Holding onto my faith and trusting God on every step. Hugs to all of you.
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Welcome Sweetmom and sorry you are having to join us but we are happy to have you and will be in your pocket every step of the way.
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hi sweetmom
hang in there- a lot of folks on this site have posted about micromets- if you need more treatment than radiation we will be with you every step of the way, if you need less we are there for you too!
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just had my second pet scan since finishing chemo and rads. Get the results back Thursday. Hoping for good news. 16 months since first diagnosis.
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Hi Girls........I'm sorry if I'm interrupting!
Just wanted to tell you that I'm nearly 6 years out from my op and I don't regret it for a minute. My tumour was bigger than originally estimated, so my breast is a bit mangled.......do I care? No........as long as I have something to put in my bra....I'm OK.
Did it take me longer to recover than I thought it would?...........yes!!!! If fact, nearly 6 years out and last week I had sharp 'needle-like' pains which worried me (not the first time), but I go with the 'two week theory'. If I'm worried about an ache or pain I wait to see what it's like in two weeks. Up to now, all my worries have gone before two weeks.
It does take a while to get over WLE, and some cosmetic results are better than others. I was discharged last year and my surgeon looked at me and said 'did I do that to you?'.......he was a great surgeon, with a great sense of humour..........yes, I have half a boob & it's mangled.........but do I care?....no
I'm here enjoying life, planning holidays, cruises, enjoying family .........and I have to say that I honestly didn't think I'd still be here to enjoy these things.
When I was first dx they gave me the option of a mx or lumpectomy and I asked what my onc would advise if it was his wife..........'lumpectomy...as 'if' it comes back, it's easier to treat.....it comes back as another lump instead of in the breast muscle after mx'.
It takes a while to completely get over this op, don't under-estimate it, but it's worth it.
Take care
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Hello ladies. I wanted to post here about my most interesting day today.
First, I went and had an EMG/Nerve Conduction Test done this morning as I have fallen twice for no apparent reason. Just have lost the muscles in my legs. I should have results hopefully tomorrow from that.
My second appointment was with my BS to get my path results. The tumor he removed was well differentiated and 2.2 cm, not .9 cm as originally told to me. The 2 nodes he removed were negative and margins were clear, but there was a small area of in situ in the breast tissue that was removed.
This surgeon I know is brilliant but he was reluctant to put me at Stage 2, which I assume I am now with the size of the tumor. He said he "thought" I was still at Stage 1. And he went on to tell me that he pays no attention to stages (???). He told me that many of his Stage IV colon/liver patients have been alive for many years with the disease. I wanted a definitive answer and I did not get one so right now I am staging myself at 2 and we will see what my MO has to say when I meet him.
It is still my BS's opinion that I will not benefit from chemo but I should have rads and hormone therapy. I am scheduling now my first appointments with my MO and RO. I am happy the nodes and margins were good, but a little distraught at the larger size and anxious to see what my MO's opinion is.
I was thinking about you all as I was waiting to go in. This is just such a crazy time. Hugs to you all.
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JoanT I agree it is all confusing. Since I am not using doctors at the same location one wonders if they ever talk and who is really in charge. My surgeon said she will be in the background from now on and it is the MO who is really responsible for my welfare long term. I am happy to have a family doctor who referred me to all of them who assured me if I am unhappy with anything he is my man to call. He has already solved one issue for me. Glad your results are good so far.
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Schoolmom, will be thinking of you & all the best to you . It will be a great outcome !!!
Sweetmom, Welcome !! breathe deep and exhale and all positive thoughts.
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Thank you, Mimi, I agree, is very confusing sometimes. At least the women in here are proactive and we question, and question, and research, and read, and we do not just sit and say "okay" to whatever is said to us. I have to fight this disease on my terms so that no matter what the outcome, I have no regrets.
My best wishes to all. We are in each other's pockets every day, I feel it.
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Joan,
No, hugs for you!
I hope all goes well and you get the good news you want to hear, "no chemo needed!!!"0 -
Hi all
My experience based on my own breast cancer and my mother's 2 cancer journeys are- the Medical Oncologist calls the shots. Surgeons do surgery, they look to get clear margins and remove tissue, they don't stage, grade in most cases but they will collaborate/discuss with the pathologist who you will never see but is looking at your tissue under the microscope determining what you are dealing with.
Once I had my post-op follow up visit I have not plans to see my surgeon again. Having one post-radiation follow-up visit with the rad onc and then sent right back to the medical oncologist. They are the ones looking at the research and developing the treatment plans in the vast majority of situations. Pick one that supports what you want to do and most importantly listens
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Thank you for welcoming me. We are all warriors of the same battle. And it feels comforting to have all of your knowledge and experience to help make the best decision we can. I pray for all of us, for strength and for a cure. I saw the MO on Monday and I don't know what to think about it, yet. The MO told me the Oncotype result which is 12%, Ki67 is low proliferative (<10%), the dr. made it look like it was not a great result. And explained that with only hormones my survival rate would go down to 8% but if I have chemo it would go down to 6%. And then asked me what did I want to do and to decide right there which way to go. OK! I was like, really? I was able to see all my and I need to think about this, I always like to analyze everything before I make a decision. Also there was other factors about staying with this dr. or not. I had already done a lot of research here, and was ready with lots of questions. At one moment the told me in a joking manner that now that I had graduated as an oncologist, I knew more than him. We were waiting for two hours to see the MO and while in the waiting room my husband and I heard him talking about one of the patients with a not too nice vocabulary. Something to do about the patient not liking what the dr. did. I'm looking for a second opinion, and was praying yesterday to find the right dr. Today as I woke up, I received a text from my husband with a Dr.'s name, referred by a co-worker. I researched and he is referred as one of America's leading experts on breast cancer. God heard my prayers, so I'm going to see him on February 7th.
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GOOD for you Sweetmom! I'd ditch that guy if he cannot explain statistics better than that, not to mention sarcastic manner. You are smart and informed.
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Atta girl, Sweetmom! It is your body, your life, and you need to build your medical team with doctors who listen and treat you with the respect you deserve! Go girl!!!
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sweetmom, so glad to hear you're going to go with a better MO! Was your OncoType score a 12?
Aeryno, thanks for sharing what your BS told you. It's helpful to hear that.
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Gemini, yes the Oncotype is 12%. We have a similar diagnostic. But, the pathology report shows micrometastasis on 1 node <2mm and isolated cells on another one.
Team kin and Miminiemi, I agree. Can't wait to see the new Dr. I'm ready for any decision.
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I know theres a rads board but since Ive been hanging out here while thought Id ask: my cousins friend had lx about a week ago and needs rads. They are giving her the option of 'regular' 6 week and the internal 1 or 2 week SAVI (catheter). Anyone had internal and/or have an opinion on why she might prefer one to another? I guess she wants to get it over with, and is planning a trip in Feb so that would be best for that. But in terms of pain/se or effectiveness- any thoughts?
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Sweetmom, I was fortunate to have an MO that I like but I only met my RO once and wasn't to sure about him. I guess I'll know soon because I start rads in 2 weeks. My score was a 28, with hormones I go down to a 14% chance of recurrence, not survival rate. If they added chemo it went down by 2.5% to 11.5. My MO and my DH and I discussed this and our collective decision was no chemo. 2.5% wasn't worth the SE's in my docs opinion or ours.
Having said that, I should let you know that I am in Canada and they might do things differently here???? I do know we don't get to pick our docs, so if I don't like this RO I'm screwed. Lol.
Very happy that you have the choice and that you have chosen to exercise that choice by getting a second opinion. Good for you!!!! I'm proud of you because that's a difficult decision to make.
Go Sweetmom Go!
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Aviva -- I am having full breast rads for 25 zaps, then external "boosts" for 5 more (where they target the tumor bed). I have had 8 tx so far, and am just getting some pinkness and a couple of small sore bumps starting near my scar. Like everything else with BC, everyone is different. I was not offered the internal option because of the type of surgery and the two sreas of BC in my same breast quadrant. I do think, though, that it is hard to know the SEs beforehand -- I am getting the pinkness and little sores kind of early. Others use no creams and get through 25 zaps with no skin problems at all. I imagine the range of reactions is also true for the internal. Don't know if that helps your cousin....
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I'm no doctor Aviva5675, but I have done a ton of reading medical journals. I think there is lots of evidence the very short one is working, but not ten years or more like the six week treatment. Therefore, some journals end the article saying positive results, but more research needed. There is a third alternative, sixteen sessions. The same amount of total radiation, but divided up differently. This seems to be the standard in Canada and UK. There is more than ten years evidence it is as successful long term, but may have different side effects. I welcome comments from others who may have read more, or who have definite knowledge. I too have had questions. None of my doctors even considered the very short one, but all felt 16 sessions was ok.
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Sweetmom, good for you! I had similar problem with first MO, waited two hours both times I went to see him. I asked what ki 67 meant when I saw the word unfavorable. He wouldn't explain so I asked for a copy and he said printer wasn't working. So I wrote the wording down and he told me I didn't need to be doing that. I never looked back, cancelled my next appointment and drove 100 miles to new MO. Love her! Gave me a notebook of information and marked everything that pertained to me as she went through it page by page. I had oncotype score of 12 so she said no chemo needed because that worked out to only an eight percent chance of recurrence.
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Sweetmom, I also had micromets -- 1mm on one node and one cell on the other. My oncologists still considered them negative nodes. My OncoType score was 16, so no chemo. However, both my BS and RO agreed that LX with rads was the better choice over MX -- I wouldn't have had rads with MX. I'm feel better that I had my nodes treated with rads.
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Jo6202 and Gemini, I can't wait to see the new MO, I don't like waiting. I feel I should have already started any treatment. The first Mo did give a lot of time and tried to answer all the questions I had. But, said that all of their patients that fall in the gray zone get chemo. The Mo emphasized on the nodes that they consider positive even thought they are micro. I was also told that since the BS only took 4 nodes, we don't know what the remaining ones look like. This scared me, but also all the side effects about chemo, especially was told about a side effect being ovarian cancer and I already have ovarian cysts. It is very complicated to make these decisions. For now, I'll try to be calm and wait until I get the second opinion.
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Aviva5675 I had the internal Contura Balloon radiation in November of 2011. My RO had been part of the team that developed it. I had treatments twice a day (9:00 and 2;00) for 5 days. This was done in Lincoln, NE. My BS inserted the balloon with the catheters attached and after the final treatment my RO removed it. I am glad I had it done. Been a little over 2 years now and I am still NED...
The BS removed the tumor and 5 lymph nodes. Told my husband that he removed tissue larger that a golf ball but smaller than a tennis ball. (all my med. people called it a partial mastectomy).
Feel free to message me if I can answer any questions for you or your friend.
Vickie
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Sweetmom --
I know it is hard to be patient, but BC seems to demand that from us frequently! Shortly after my Dx, my GYN, who is a cancer survivor himself, told me to breathe and take my time -- "This is not an emergency," he said, "take time to educate yourself and ask others for their wisdom and opinions."
Ask your new MO to quantify the benefits for you -- that was how I finally wrapped my head around the whole chemo/rads/recurrence thing. I have no micromets -- in fact my nodes and my margins were clean, nonetheless, the tests indicated I would benefit from chemo. My MO was able to show me that 1) with surgery only, the chance of recurrence was about 30%, 2) with surgery and rads the chance of recurrence was cut in half to around 15%, but with surgery, chemo, rads and hormone therapy the cance of recurrence is less than 5%. Seemed like I could be strong for 12 weeks of chemo in order to maximize my odds. The statistics and the odds are different for everyone, so make sure the MO patiently walks you through it so you understand all the options and recommendations. And, if you can, take someone with you -- a second set of ears and a second brain to think of questions is really helpful.
Even though my chemo was rough (I was allergic to one of the drugs), I survived, my hair is growing back, and my energy has returned. I worked throughout all the treatments, and I am working through radiation treatments too. It really is true that you don't know how strong you are until you have to be strong. Whatever the journey holds for you, you will be able to do it -- and we will all be in your pockets with a helpful {{{squeeze}}} whenever you need us!
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Anytime you have a physician that you don't "connect" with I think its time to switch. In the US for now we have the ability (maybe soon to be luxury) of doing that. I am interested in Canada can you get someone in the same group or just like it or lump it (no pun intended).
I agree with TeamKim- everyone is different so know your numbers and your risks and are they relative/absolute get the whole picture. Everyone was consistent with me Surgery is the first line of defense, radiation the second tier and lowers recurrence risk and finally tamoxifen for long term recurrence reduction. My Oncotype score was 13 which with Tamox is an 8% risk no chemo benefit at all so here I am
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Hi Wyo. In Canada it is quite literally, like it or lump it. I am fortunate in that so far, I have had the regions best BS, an excellent MO and although I'm not sure about my RO's bedside manner, I have researched him and he is also one of the best. So I can live with the fact that he's a bit repulsive to me. After all, I'm not inviting him to a house party
What we can do in Canada, is request a second opinion, provided the doc we want the second opinion from is not in the same 'group' as the doc with the first opinion. Our docs get together in groups of 5-10 in order to provide coverage 24/7.
So it's not all bad. In fact, I've lived with it all my life. I'm used to it and it hasn't caused me any problems so far.
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thanks for the Infos... will let them know about the ten year stuff. I think she is about 63
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