Test Results Are In!
Comments
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Hi Melissa, I guess my first lumpectomy listing was really an excisional biopsy, but like Beesie's situation, it did result in a cancer diagnosis, if one considers DCIS as cancer (speaking to that issue of cancer is cancer and benign is benign, here's a diagnosis which is not clearly in either camp, from my point of view, many call it pre-invasive cancer or pre-cancer). What happened was that I received the diagnosis as a result of that excisional biopsy, which had no clean margins in any direction, resulting in two of what you would call lumpectomies, and I might actually call re-excisions. The "big one" was the excisional biopsy, ironically, and the smaller ones were re-excisions or lumpectomies (since the diagnosis had been made by then).
Kathy--About who should be posting where, I'm trying to stick to the "Not Worried" thread, the High Risk thread (I did previously have multiple biopsies for ADH/ALH) and the DCIS thread. Technically, I only "fit" with the DCIS thread, as I'm no longer at "high risk", with the exception of the family history, and I'm at slightly increased risk in the other breast due to the DCIS diagnosis. I will stay off of other threads, and would never advise anyone who has any invasive breast cancer of anything. Kathy-you being Stage IIIc (and recalling all you've gone through in previous posts) our situations are not even on the same page, really light years apart, regardless of the fact that I got a "cancer" diagnosis.
Eventually, I'll totally wean myself from this website, but like others, I'm approaching my annual mammo/sono, which resulted in another biopsy last time around, so yey, I guess I'm still a little anxious.
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i may be ignorant but i have always considered DCIS as cancer.
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"I had no diagnosis prior, but did have multiple masses removed that day,
most of which had not yet been biopsied. Due to discordant results
between pathology and imaging, excision with margins was recommended...."That sounds like an excisional (i.e. surgical) biopsy, doesn't it?
A biopsy - "an examination of tissue removed from a living body to discover the presence, cause, or extent of a disease."
"...and described to be as partial mastectomy or lumpectomy." As MelissaDallas said, those terms are often used for insurance purposes. My mother had a lumpectomy. When a re-excision was required to get wider surgical margins, the paperwork called the second surgery a "partial mastectomy". My mother freaked out about that. I explained that it was the same surgery as her lumpectomy (it turned out to be a much smaller, easier surgery) but her insurance would only pay one time for any operation so the doctor's office had to use a different name for the operation in order to get the payment approved. My mother was very relieved.
Excisional biospies aren't all that common. One reason why the name, although medically more accurate and appropriate, isn't always used is because by grouping excisional biopsies in with lumpectomies, procedural documents don't need to be developed and maintained for different operations that are so similar. This is usually why a hospital or doctor's office might use the single term.
I don't care what a doctor or hospital calls the operation.
I do care what it is called on this board, since this is a breast cancer website and the use of the term lumpectomy implies that someone had breast cancer.
As for the bilateral mastectomy, sarahjane, I notice that on your diagnosis line you indicate that you had a prophylactic mastectomy. Including the word "prophylactic" provides the level of clarity that is missing when someone who's had an excisional biospy states that they've had a lumpectomy.
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Wrenn,
As far as I know, Moderators please advise, this site is both for women who are concerned about their breast health and those who have been diagnosed. As a woman, I'll always be concerned about my breast health and I find this site helpful to inform myself on breast health. Just to give you on example, Sara Jane's experience seems to be extremely to me and therefore, I consider that I have every right to be on this site and learn from other women.
Alicki
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Alicki, i was only talking about my experience and not "rules". I felt it would be insensitive of me to try to fit in at a place where i clearly did not understand what the members were going through. I certainly wouldn't have argued my right to be there. Mentioning the bereavement group was to show my point.
Your experimce is your own. I was simply thinking out loud. No one can ban you.
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Thanks alicki. Feeling a little beat up here over just trying to be helpful. I guess the welcoming committee has the weekend off.
Message received wrenn.
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Wren,
I certainly can't understand what diagnosed ladies are going through. There's a lot of us that are in a grey zone or at risk. My pathologist considers me at high risk, my breast surgeon doesn't, my OB/GYN does (due to hysterectomy), no consensus there.
And it's with these ladies I try and connect, like Sarajane, whose freeky nodes situation helps me to keep in mind, that my enlarged nodes (fatty) are also B9 whilst I am going to extreme measures to get them biopsied because here where I live, they equate fatty with B9 no matter the size of the lymph node!!!!
So if another person, and there has been at least one, with freeky nodes comes around, at least I will be able to share my experience and suggest some help, for what it's worth
Alicki
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it doesn't bother me that you are here. In fact i wouldn't have noticed since not everyone lists their Dx but i happened to read this thread and when the subject was brought up i started to think about it and did think it was strange to want to stick around.
I movd to a thyroid disease forum after benign results instead of staying on the cancer site in case i got it in the future. I also knew the true survivors could handle the newcomers much better than i could.
Anyway, again...thinking out loud here ...not trying to be combative...carry on.
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Hello All,
Generous kindness and caring support is welcome here by all, regardless of biopsy results. We do not see rules being mis-observed. We are very appreciative of supportive comments to help women and men cope with the anxieties around the waiting process. We would like to see this part of the conversation respectfully stop.
Thank you, The Mods
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I agree with Wren. I would not 'haunt' sites that I (or a Loved One) did not have a DX for. I can understand going for information before DX/while waiting for a DX, but once the neg./benigm path. report(s) are in does not make any sense to me.
This is, after all, the internet and anyone can present themself in any way they choose. No one really knows anyone else .
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As I read through this thread, I cannot believe the childish bickering I am witnessing from certain "diagnosed" women. I myself belong to the "diagnosed" category, but in no way share your opinions about who should be looking and posting on what threads. We are a community of women, all here to learn and help one another, no matter what our circumstances. It doesn't matter if someone doesn't "understand" your particular situation, we can still offer friendship and support. You really need to get off your high horses because yes, you do sound like "cancer snobs".
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teaspoon,
Love the Avatar!
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People post here for a huge variety of personal reasons. I think it's unfair to pigeon-hole anyone without a diagnosis into the 'anxiety ridden woman' category. For myself, I'm here because breast cancer has been a presence in my life for as long as I can remember. Two aunts, my grandmother and my sister have been diagnosed. In recent years, I've had my share of breast issues, which resulted in a prophylactic bilateral mastectomy, bilateral SNB, axillary node removal, and reconstruction. As a result, I have a lot of the same concerns (for myself and my 3 daughters) and ongoing questions as many who post on the not diagnosed, breast reconstruction, high risk, and surgery forums. They didn't magically disappear once my bandages came off. I don't think that makes me anxiety ridden or a cancer groupie. I feel that my perspective and experiences, while different from a woman who has been diagnosed, can still be relevant to someone who is facing their own breast issues. Actually, I think it is helpful for a woman (or a man) who is afraid of an upcoming procedure, concerned about a symptom, or whatever, to have input from someone who fortunately received benign results in their own experience. It underscores what everybody here seems to say - there is hope for benign. Most people do not develop breast cancer. Diversity in the community here showcases those facts.
I do understand the frustration that led to the exchanges on this thread and the one in comments & suggestions. I have nothing but compassion and respect for anyone battling breast cancer. I contain my posts to the threads I have personal experience with, because the absolute last thing I want is for my presence to offend anyone. I think clearer guidelines for posting would be a great idea, as I don't believe most people are trying to do harm.
On the lumpectomy issue - I just want to throw it out there that although I've now deleted all my signature items, I did not list that in my surgeries to make myself seem 'more serious' or imply that I'd had cancer. I generally go out of my way in posts to say that I DIDN'T have cancer. I just did not realize it would be perceived in that way. I've seen a wide excision referred to as lumpectomy on countless occasions here, even recently by the Mods in a thread discussing fibroadenoma removal. So...maybe a way around that controversy would simply be to provide a definition of that surgery, and others if needed, on the screen where it can be selected, to ensure everyone is on the same page.
This is an amazing, unique community. It saved my sanity a year ago and I continue to find it to be a tremendous resource.
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This forum is "Benign Breast Conditions". This is in the Not Diagnosed section of this site and I thought it's purpose was so we could learn from others and be there to support each other during these stressful times. I really don't understand, if you have been diagnosed, why you are coming onto the not diagnosed site and putting down people who are going through something they have never gone through before. The having tests and waiting for results is very stressful for those who have never had to worry about breast issues before. We are here to support each other and help each other get through everything. I will be here for anyone who needs a hug and try to be supportive and helpful. Sorry if that bothers anyone but having to go through tests every 6 months means this is not going away anytime soon and neither will I if anyone needs support.
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Colleen,
THis section has just been created. The post above was moved from another forum
Best
alicki
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Even before being moved here, it was still in the 'not diagnosed' section though. Just saying....
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When this thread was started, there was no 'Benign Breast Conditions' forum - that was just created the other day and this thread was moved to it. Hopefully, it will keep those who have no BC DX here and not attacking us who do have a DX in other forums.
Farewell
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Thank you for clarifying that this thread was just started.Kicks - I was not aware of anyone attacking those diagnosed in other forums. No one should be attacking anyone. We should all be respectful of what everyone is going through and should not be attacking anyone. We should all be here to help and support each other.
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Kicks - Me thinks you're up on that high horse again...
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I've never heard of anyone attacking anyone who has a Dx. Other than defending their right to start or be on a thread on the "Not Dx'd but Concerned" section. I am shocked that anyone would do that. Have you brought it to the attention of the mods?
I'm glad that they started this section. It will be good for women who can't figure out where they stand and who often get conflicting information on their b9 (Possibly only for now) conditions.
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We just want to emphasize the purpose of the BCO site to be a place of kind and caring support regardless of biopsy results. We wanted to specifically acknowledge the worries, concerns, and support needs of women who do not have BC but have other breast concerns and thus created this forum as a result.
Thanks to all of you for the support and kind words that you offer to each other and the world of difference that you all make to each others lives.
Our only hope is that this kindness and compassion continues.
Best wishes from the Mods
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Thank you to the Mods! Now everyone has a comfortable "home" where they can freely post all their worries and concerns. I hope we can all continue to peacefully coexist.
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Holy cow, what a disturbing thread. Why would ANYONE give ANY OTHER PERSON a hard time about posting concerns/questions/worries on this forum? Before I was diagnosed, I had lots of questions and it was 6 months after I joined that I was diagnosed! I came here for support and information and was never attacked like some of these women were. As women, breast cancer is ALWAYS a concern for us and because lots of benign conditions can scare the pants off you, it is great to have a place to wait and share while the tests are being run.
I support anyone who comes here scared and confused. I always did and always will. It seems to me that everyone deserves respect and compassion, no matter if they are just anxious or awaiting test results, especially in their own section such as "Not diagnosed but worried" which speaks for itself. STOP IT and play nice, okay? xoxo
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Thanks April. I've logged on a couple of times to post and deleted them on the last couple of days because I was not sure I was welcome here anymore. Have not actively posted since my benign biopsies but was always glad if I needed to start again this forum was here for me. Well my latest follow up this week has me stressed so I came here to see if anyone else felt the same way. There is negativity from some that I don't remember from before. I was so grateful for the support of veterans, mods, and newbies.
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GramM I really appreciated your support last year when I was going through all of this for the first time. I hope everything goes well for you this week. I had my MRI and mammogram so back in the waiting for results game. I hope there is no more negativity and we can just be here to support each other. Good luck and let us know how everything goes. Hugs.
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Hi Colleen. Thanks. Hope you get good results. These follow ups get old don't they? Last one I was like bring it on no problem. For some reason this one not so much! Had my Mammo/US yesterday. Made the mistake of asking the Mammo Tech if she could see my biopsied spot so she showed me. Yep, could see it and then of course I saw another spot! Didn't ask her about it but you know how it is....hoping to hear from BS soon. Hoping if this follow up is good, I can go back to yearly mammos again. Keep us posted when you get your results.
Good thoughts to all.
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Please don't let the negativity of anyone on this thread scare you away. Heck I joined back in 2009 during a particular cancer scare and everyone was so supportive of one another. Back then I had microcalcifications, a radial scar, a stereotactic biopsy, and then an excisional biopsy. That time period was probably more stressful than getting diagnosed this year because there was sooo much waiting for test results, surgery, etc.. So keep posting! Obviously "Benign Breast Conditions" and "Not diagnosed But Worried" were especially made for women that haven't been diagnosed. Yikes, maybe I should get out of here :-) I wish you all the best!
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- It is always hard waiting for results and it never seems to get any easier. Wishing you good luck GramM.
Juliecc I appreciate the advice and support from the strongest women out there. Good luck to you with your fight! You are not out of place at all here. I look forward to advice from those of you who have been here. Hugs.
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Juliecc we appreciate all the support. You are very welcome here! Thanks everyone, I 'm glad I posted again. This is how I remember this forum.
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