Lumpectomy Lounge....let's talk!
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Judy, I really hope you get to schedule that sim right away again, but whatever the recommendation, know that it's doable. Does your center do the MammoPrint or other genome test? City of Hope uses Prosigna for those in the intermediate onco area and has had excellent results. That darn intermediate score is the pitts! Glad you're able to get a second opinion.
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Dara, I have been following some leading researchers in the area of over treatment as well. All factors and predictive tests should be weighed accordingly. In the end, the patient makes the final decision, weighs the long term side effects of treatment, and comes up with the best plan possible with their doctor.
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Hi Sandy, thanks for bringing this to my attention.....I must have clicked on the wrong choice for the stage...my bad!
I am at stage 1A and the mass is between 1 and 2 centimeters; I found it while on vacation for my birthday on the 23rd of
September (nice birthday gift); my PCP got me in quickly and by the 30th it was confirmed. I have had so much thrown at
me this week that it's hard to keep everything straight and all my ducks in a row and if I do not write things in my planner I'll
forget. I am hopeful for a good prognosis.....but it still does not take away the element of fear; it's beginning to sink in
"I have cancer". If there is a sense of normalcy of how women are to feel or some sort of emotional pattern, I'm not sure
that I have found it yet and that's why I am glad that I came to this website.
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TaTaTootsie, eventually you will find your new normal. It won't be what it was before breast cancer but it will be one that you can live with. It's so darned hard when you are starting out: the shock of the diagnosis, all those huge decisions about surgery. Then waiting for the pathology report and perhaps your Oncotype score - will you need chemo? Then getting through radiation (most likely) and starting on anti-hormonals. Pretty soon you won't need your planner, you're feeling like you've been abandoned after all these appointments. Eventually, it will feel okay. And no, it was NOT a nice birthday gift.
Has your surgery been scheduled? That will help. Know why? Because FINALLY you are DOING something to get rid of the damn cancer! And that is huge.
Keep asking your questions. And keep in mind that there doesn't seem to be any one answer that fits anything. Every woman's BC is a bit different. And genetics can play a role in the treatment path. More confused? Join the club!
HUGS!!
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Molly 50, you are not the only one amazed that I felt it; I am amazed .....so is my surgeon, so is the pathologist and so is the radiologist and yes I do
realize that the actual staging is done after surgery and I am
hoping for the best but I also am prepared for the worst if it is beyond stage 1 or larger than 1 to 2 centimeters or if the lymph nodes are
actually involved. I know the danger of assuming ...."it is most likely" or "we are confidently sure" and so do my doctors. I wanted their
long-termed educated, experienced, professional opinion and they gave it to me honestly like I asked. And I am a little angry for finding it I guess because it has turned my entire life upside
down. "Early", "very early" and "small" are what has been the consensus from the start. I know that I am learning a lesson about taking things at face value and it's not over yet.
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Tootsie- I don't have cancer. They cut it out during the lumpectomy. And do you know what? It is a group of abnormal cells. Cancer has such a negative connotation. So, for now, we just have abnormal cells that require us to get a breast reduction (lumpectomy),eat healthy, exercise, take a pill, and for me to go and get a suntan on my boob every day for the month of October. I suffer from a large case of denial and an incremental acceptance factor!
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PontiacPeggy, THANK YOU. You have just pulled out of my head most of the mixed up thoughts and mixed up feelings that I
have been feeling over the last 2 weeks . I have not been able to find a way to sort them. Is it normal to feel this confused ? I know what I want to do, but wanting and doing the correct and best thing
are two entirely different things. I really do have wonderful doctors on my case...the problem is I have known them a good bit
of their careers. And I have held back tears because I am afraid if they start flowing that they won't stop. My surgery is not scheduled yet; am needing
an MRI of both breasts even though only one is involved. I swear that when my radiologist did my core biopsies, I thought she was going to turn my
darn nipple inside out or get down so deep she'd "puncture my lung". I told her this and she laughed and we both laughed about it. I want the surgery pretty
damn soon because I am running out of patience with "we need this test" and "I'd like you to have this". I know this is necessary but there is a limit to what
I can put up with right now.....I want it OVER WITH !!!!
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Tatatootsie, hang in there. We've pretty much all been confused, angry, stressed, and tearful. And the wait is always the very worst! It seems to go on forever. We're all here for you!
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TaTaTootsie, you are so normal! We are all confused, especially at first. You'll be fine even if it takes a couple weeks or more to get your surgery. Core biopsies are no fun. At least you could laugh about it. And it really is best for the doctors to have as much information as possible before diving into your breast. I don't know if I recommended Dr Susan Love's Breast Book, but I think it is invaluable. You won't be quite as in the dark as now. And you may even find you know enough to ask the questions that should be asked (that's harder than it sounds). Don't assume any treatments you'll have. You may have a lumpectomy (most likely). You will also likely have radiation. But the doctors AND YOU will decide what is best for you. And what you decide might be different than what was right for ME. Each of us makes those decisions. We use all the information at hand and then make our decision. And never look back and try to second guess yourself! End lecture
You might feel better if you cry! That can get rid of all those stress hormones or whatever they are that are floating around in your body. We all have cried. There's nothing wrong with that. See? You ARE normal!!
HUGS!
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Michelle you are so right....they are abnormal cells. And one day these cells will be removed from my body
just like many before me have. My ER and PR came in positive, both at 100% and I have been told that
is very good because my oncologist (haven't met him or her yet but I have voiced my choice) will know how to
approach my scenario....it's not a condition, it's a scenario...I like that better than condition.
I have voiced my heartfelt thoughts and have reached out genuinely to a few of you ( I am still a newbee), by
saying "I am here for you" and I want to thank everyone here for being "here for me"...you have touched my
heart, truly.
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Dara, Thank you...I wish I could hug all of you right now because I think we could all
use one right now.
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My previous post was deleted by a moderator, Tootsie. I understand the serious nature of what we face. After the totality of my work and education, I also know the degree which others much worse off than us face - and they do an heroic job. If you want to private message me, please feel free. I think it important to keep a perspective on everything in life and as I lecture to my students, and discuss women's issues at events for national organizations, take information and process it in your own way. For me, my students, my conference attendees,the term incremental basis has significant meaning.
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Tatatootsie, I'm glad you're here... I had surgery 9/2 and then the wait for path report, saw MO, RO, another test, saw MO, scheduled for sim, then canceled to see a new MO, so a lot of waiting and going nuts waiting... you couldn't have picked a better place to be... you've probably found this site is like being around family that loves and understands what you have and are going through..
you can let it all out... and someone has experienced it or is going through the same...
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Pontiac Peggy, thank you for all the hugs...I will share them with everyone. A co-worker of mine
loaned me her book by Zora K. Brown and Harold P. Freeman, MD and it's good. I also have a
binder put together by my personal "Breast Cancer - Nurse Navigator" (is what they are called) from
the Breast Center where I was diagnosed last week and it has much information in it as well. A lot
of educational material, coupons for lumpectomy or mastectomy services that are done for you when
you go to be fitted with a bra and a lot of stuff like that. I am not sure if I want a lumpectomy because that
does mean that I will have to have radiation and not likely to need chemo ( and that is the consensus of not 3 but 4 physicians involved with
me). My right breast is already noticeably smaller than my left and if he does just a lumpectomy, I of course will
want him to take a reasonably wide, viable margin ( my pathology days are haunting me) my right one will look even more
noteably smaller....and I do not want to look "lop-sided". Why I may lean to the left when I walk LOL ! I expect
my front end to be in perfect alignment !If I do not laugh and make jokes about this I will go crazy.
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IHGJAnn49, thank you. I feel it providential that I found this website. I feel it providential that I
found so small a mass. I feel it providential that all of you have reached out to me tonite because
it's the first time I have truly showed any anger and fear....but I also know that you cannot win a
fight without some anger...and sometimes our strengths are born out of fear.
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Tatatootsie, it's great you are going to have a MRI first. ILC is one of the few cancers that can be bilateral so your team ruling that out is a good sign. Then you can relax and not worry so much. As for mx or lx, that's a recommendation your team should make.
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Molly, how is your son doing? Hope things are a bit better today.
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IHGJAnn and Tatatootsie - These early days are so difficult. I am not a regular journal keeper, but I did keep one from the day after my (annual) mammogram went sideways - it was a good way to clear and organize my thoughts and feelings, record important information, rimelines, and questions as I thought of them, and just basically detail what happened along the way. I didn't want to forget anything about the experience, I wanted my memories to be clear - my mind blanks sometimes during stress and it's difficult to remember every detail. I read my journal back recently and realized how far I've come from those first very confusing and stressful days and weeks way back in early January. The WAITING!! Such a horrible time because I had no control over anything, but now - looking back months later - it was a blip in time. I educated myself by reading well-respected websites, I upped my volunteer work because doing for others less fortunate has always helped take my focus off myself, I binge watched comedies while waiting for results (because I sure couldn't concentrate on a book!), and just tried to keep as busy as possible. (Then, of course, my elderly mom started having health issues and 95% of my energy was devoted to her before, during and after rads.) Lot of the other gals have mentioned that once you have a plan in place, you'll relax, and it's true because then, you finally feel some control over your life again.
This site will continue to be a positive, warm and kind place to visit where no question is considered silly or too small - chances are one of us has experienced something you're going through or are worried about and we can all help you through these early days in one way or another. Hang in there! xo
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Tatatootsie (love your name btw!)-everyone has given great advice and counsel so far. I would just add to be an advocate for yourself, rather than waiting to be told stuff. I learned that early on and my BS complimented me on really taking control and getting info & research & procedures done in a timely manner. After 3 different consults (all sorta the same before surgery) one consult wanted to do a bunch more testing & MRIs. When I shared that with one of the other docs, she said
'you can do what you want, but be careful because most likely the MRI will come back with some level of microscopic cancer. So don't be surprised. Then a doc may only be able to offer a mastectomy (even tho a LX will be just as effective). When in fact the radiation (and/or chemo, as at that point they didn't think I'd need) will kill any of the microscopic cancer that may be there anyway. Many doctors will opt to do a bunch of additional (& often unnecessary) testing before surgery just to collect insurance/money.'
While this hopefully isn't the case most of the time. Be careful. Be in charge. Tell them what you want or don't want. Your BS will do whatever surgery you want, even if you choose not to get any additional MRI (mine certainly did). And whatever decision you make-have peace & trust with it...and NO regrets.
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Tatatootsie, it is the law that if your doctors recommend and you want it, insurance/Medicare must pay to have the other breast reduced if lumpectomy would make the asymmetry even more apparent and physically uncomfortable—and if you elect to have mastectomy, you are also entitled to coverage for either mastectomy of the other breast for symmetry, reconstruction after either mastectomy or extensive lumpectomy of the cancerous breast, or reconstruction of both breasts after BMX. So you do have several options. (Know too that mastectomy isn't always a guarantee that some radiation won't be necessary, nor even that there will be no recurrence).
100% ER & PR+ is a very good sign.
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Tootsie, I went through every emotion you mentioned. Mine was found during my annual mammogram. My mom had just had her annual mammogram 3 weeks before mine & it detected calcifications and she had a biopsy that thankfully can't back negative for BC. So when they found calcifications during my mammogram I figured I would be just like my mom negative. I googled it and it said that only about 20% came back positive. So I just knew I'd be in the 80%. Was not prepared for the news that it was positive. I kept looking in the mirror and had to make myself say, you have breast cancer. I remember being mad because I thought I had a plan & then a breast MRI revealed an area of concern. So then another biopsy & more waiting. Was scared after the pathology from my first surgery revealed that I didn't just have DCIS, there was a small area of IDC. All I heard was "invasive". But my breast navigator had given me a packet with a booklet from breastcancer.org and I found this wonderful support group! So with trust in the Lord, this forum, my family & my church family I made it. You will too! Big hug to you
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kdtheatre- I agree with you 200%. Except for me, the MRI was required by my oncoplastic BS. The MRI provided the pathway through my nipple and underneath to remove large accurate margins of tissue. I don't have a scar. Also, prior to having an MRI, I had an ultrasound, 3d mammogram and two forms of biopsy. I was fairly comfortable before the MRI, that we had left no stone unturned. Some doctors will want to run every test, warranted or not. As our own advocate, we need to understand why they require such tests and question whether the tests are redundant. There is alot of information to sort through, and it can be overwhelming to some.
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Molly50, I too am glad that my surgeon ordered an MRI...would you want your surgeon
potentially walking into a "gunfight" with a "sling-shot"...I think not. I am aware of the type
of cancer I have and what it looks like upon gross examination....it grows little projections that
are not visible 75 to 80 per cent of the time on ultrasound, which means he will need to take
a larger "lump" with good, clean viable margins and which in turn will make the right breast look
smaller than it does now. I knew him from my days in O.R. and I would not want anyone else
doing my surgery...I told him "as long as you do exactly as I tell you, there will not be any problems"
He knows I am bossy !!! And I WILL have things my way ! My pathology days as well have come
back to haunt me because if you told me that I would be one of the 4 out of 7 to get breast cancer, I
would have told you that you had rocks in your head.
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tbalding, I have every support element that you have mentioned and I do believe that I
will be alright. There is a reason I found it but what it is I do not know at this point. My family,
my church, the practice where I maintain a reputable position are all behind me 500%. I am
thankful for the encouragement coming my way from this website too !!!!! HUGS BACK AT YA !
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kdtheatre, thank you for your positive and supportive comments. I do believe that I am in
wonderful, gifted and skillful hands knowing the things I know and I certainly do not feel like a
mushroom ....being kept in the dark and fed b...s...! I agreed to the MRI with my surgeon for obvious
reasons, despite the fact this is my first go-round...and it is the right thing to do for me! We agreed whole-
heartedly, because I want to know certain things as well before the surgery. I will insist on having
the final say in important things after fairly weighing pros, cons, alternatives because everyone has
an opinion (obviously) and they are like noses....they all smell. (ha ha) Right? I can be the best patient
in the world, but I am afraid to admit that I know that I can be the patient from hell!
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Grazy, xo xo xo back at you girl! We are all the bomb.com !
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Tatatootsie, so happy to hear how confident you are with your surgeon.
Dara, thank you for asking about my DS. I was hoping he was starting to do better but then when I got home he started having clusters of seizures. Wednesday he was in status epilepticus for about 12 hours. So many, many rescue meds later he basically slept for two days and then bam more rescue meds. Thankfully it didn't get out of control today. I worry so much because he's lost 5 pounds since April.
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Molly, BIG hugs...so sorry to hear he isn't doing well and hope tomorrow is better!
xoxo
Octogirl
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Molly, gosh that must have been 12 hours from hell for you. And then to have to use the rescue meds again 2 days later. Have you been able to breathe yet? Your DS looks as if he can't afford to lose 5 pounds. Hopefully, he'll be able to gain it back or at least stabilize. You are always in my thoughts.
HUGS!
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Thank you Peggy and Octogirl. It's been very stressful. Hopefully he stabilizes.
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