Lumpectomy Lounge....let's talk!
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Holy cow, Peggy~! 800-1000 books? In one house? I don't think I even know the titles of 800 books. I get mostly paperbacks. I read primarily non-fiction and historical fiction. I almost never re-read a book, so when I'm done I pass them on to one of my siblings or my mother. Lots of times I take them camping with us and put them in the lending library (take a book, leave a book.)
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Hi everyone and thank for listening I know this is a lot....... but I'm not sure what to do. Love, hope and personal experiences will help us all!!
I'm so confused with this study the Z11 done in 2011 can anyone tell me the chances of the lymph nodes having more cancer if they are higher compared to not having anymore cancer invading the lymph nodes when one is found to have cancer?
I don't want to take a chance and don't get the right treatment plan but the treatment plans can be so scary and a bit much. It just seems like things have to get worse before they get better in order to KILL this EVIL WEED THAT WON'T STOP GROWING UNLESS YOU CUT IT OUT AND DOUSE IT WITH CHEMICALS!!
I suffer with depression and anxiety and OCD and I was in the hospital 2x prior to being diagnosed and now this. This has truly been the worse year of my life. I cry a lot and I'm angry and I want to go back in time and make all this GO AWAY and get a do over!!
I'm usually an up beat fun person, I'm a LEO, I'm the party starter and I love to dance and have fun, love music, people and children are drawn to me, I always get them dancing!. And animals we go to ZOOS, I've been to 19 different zoos in the USA our goal is to go to all the ZOOS in the USA. And we've gone to a lot of State Fairs we've been to IOWA STATE FAIR, WISCONSIN STATE FAIR this one we go to every year, MINNESOTA STATE FAIR this one we've gone to 2 years in a row and wanted to go to it this year but not sure about this year, OHIO STATE and Milwaukee Summerfest we go to every year. But this year we haven't done as much as we usually would because of all of this and I'm just not into it. My relationship has gone through a lot this year it's been very hard on my man, I'm surprised he still wants me in his life. We've been together for 13 years, not married but we are in my eyes. But with the hospital stays 2x for my mental problems and my body beating me up the RA/Lupus that has taken its toll at times and now CANCER it's been a rough road to say the least!!
I was diagnosed with Rheumatoid Arthritis/Lupus and Ulcerative Colitis and other auto immune diseases that come in and out of my life. And I've had RA/ Lupus since I was 13 yr old and we think that I most likely got it through a viral infection when I was around 8 or 9 years old. So pain has been a part of my life and that's mental as well a physical and I not sure if my small body will tolerate the chemicals they want to pour into my chest. I've been on METHOTREXATE and I had to have it adjusted due to having severe reactions to it being to high of a dose. I'm more scared of the treatment plans then the surgery!!! I'm so scared and sad.
Most who know me aren't used to seeing me like this and its almost like they expect me to snap out of it and make myself be happy and positive or else it will kill me they say. Most don't know what to do to help......but they say, stay positive, eat healthy, find something to make yourself happy and this is all nice and most likely right but not always as easy to do at times.
I'm new to all of this so I just want to get feed back so badly this has made me so confused. I would love if others can give me more of their feed back and if they could tell me what they think or feel......... like would they say, I would not take a chance and I would get the surgery or I would really question this much further due to the recent changes at looking the sentinel lymph node and it having CANCER in just the one lymph node and proceeding with the full lymph node removal if its really is beneficial?
I would love to know if others who have had one sentinel lymph node removed and it showed CANCER and you then proceeded to schedule the full lymph node removal you had the surgery....... So my question is what's the the majority of others who have/had CANCER in more lymph nodes after the full lymph node removal was or is there more others showing no CANCER in other lymph nodes after having the full lymph node surgery. surgery.showing CANCER due to the fist surgery.
And also are there others who had the one sentinel lymph node removed and stopped with that and then had the Radiation and Hormone Therapy and the CANCER did not come back and you're doing fine and you have surpassed the 5 year survival rate. My Oncologist. says if anymore CANCER is found that CHEMO/RAD/HORM that's the FULL MONTY will be the treatment plan. SO CONFUSED, SO SCARED!! Lots of love and laughs always!!0 -
Goodness Poodles! I hope that you get answers tomorrow & it's something easily managed. Can't imagine having to deal with diarrhea that long. Will be in your pocket tomorrow. Hugs!
I love to read too. I read mysteries. While I have an e-reader for convenience, I still love actual books. I love going to the library or bookstore & inhaling the smell of them
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Cinnamon68, you certainly have had a tough time of it. I can't speak to the lymph nodes since they took 3 (two thought they'd come along for the ride) and all were cancer-free. I know it sounds impossible but try to take a deep breath. You'll get through whatever you have to get through because that's what we do. Sit down and list all your questions and discuss them with your surgeon or MO. Get answers. What exactly does he want to do? Take a few more of your nodes? All of them? Is he going to do chemo anyway?
Obviously you have a lot of issues that will be impacted by your treatments whatever they are. Make sure you emphasize the drugs you are on now and why.
You might consider putting your location in your profile. We probably have BCO members near you.
HUGS!
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Poodles, you poor thing!! It sounds like a colonoscopy might be a good idea. Welcome Cinnamon68, I don't know honestly. I read the study and it makes sense but I think it takes a long time for things to change within the medical community. I had two positive snb's so I had alnd done. 9 nodes removed total. I am doing fine, no sign of lymphedema yet.
You can always ask for a second surgical opinion.
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Poodles, damn. That's hard to cope with. I hope your GI figures out what it is. Could it be a food allergy? Nerves? (Yeah, why would you be stressed????). Didn't things start to get more challenging with your mother about the time you started all this? It could be a possibility.
I re-read nearly all of my books. Some many times. They never get old and I find something new in them each time I do re-read them.
Good luck, Friend!
HUGS!
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Poodles, ouch! Hope it's “just" IBS-D, which I had as a teenager (and was seriously underweight if you can believe it). For the colonoscopy, my most important tip is to get a tube of Desitin ointment (yeah, I know it stinks) and slather it on the perianal area BEFORE your first trip to the john after starting your prep. Better yet, put it on and then drink the prep. I didn't--and until I finally wised up, I felt like I was pooping razor blades.
General anesthesia doesn't have to be nauseating. Ask the anesthesiologist for some antacid or Zofran beforehand. And they don't necessarily give you gas, but rather propofol (“milk of amnesia") and a powerful muscle relaxant. I am a 38 H or I, so it was a challenge finding something supportive to wear before I'd healed enough to get back into my underwire bras (and yes, they do sell really pretty & even sexy bras in very large cup sizes--mostly European & UK firms). They sent me home in a size XL velcro-closure surgical bra, which was the largest the hospital had and three sizes too small. I had expected this (or a wide Ace wrap), so ahead of time I went online to HerRoom.com and bought some Leading Lady knitted front-closing leisure/sleep bras in 40 F/G/H (after radiation I had some swelling so I went up to 42). Those step-in Genie or Coobie bras (never mind the “Ace wraps-with-spaghetti straps" at Target or Walmart) were way too small for me. If you are truly no bigger than a 44DD you might be able to find some front-zip Playtex sports bras off the rack. Playtex makes cups up to DD in non-wired styles, many front-closing. I am back in my 38 H (or I, with a little wrinkling in the top of the Rt cup, since even before surgery my Rt was a little smaller) underwire bras, but I was very lucky that neither the incisions nor radiation fields coincided with the underwires. If you want to combine bra and tank, Amoena makes padded shelf-bra tank/camisoles in a rainbow of colors up to size 20 or 22. Expensive but very pretty (though too revealing for the office if worn without a blouse or shirt).
Cinnamon, can't speak as to why they biopsied only one sentinel node and didn't dig deeper and either biopsy adjacent nodes or do at least a level 1 dissection when that sentinel node showed up positive (they usually send it out for pathology when you're still on the table) before closing you up. They took 4 of mine--2 sentinel and 2 non-sentinel adjacent to biopsy, and all turned out negative. Seems irresponsible not to investigate further while you are still “under" if the node they remove is positive, rather than subject you to more surgery and anesthesia risk. But I am a layperson, what do I know? Don't agree to chemo until you either get OncotypeDX results (they order it for Grade 1 or 2 ER+/HER2- tumors between 1-2 cm with 0-3 positive nodes)--unless your surgical path report shows mixed tumor types with weakly positive hormone receptors and mitotic rate of 2 or higher, which would indicate a more aggressive cancer and an almost certainly high-enough score to warrant chemo. The younger you are, the more aggressive your cancer usually is, and normally the benefits of chemo would outweigh the risks. But with your comorbidities you really need a heart-to-heart with your MO about that, should you score 18 or higher on OncotypeDX or if you aren't a candidate for the test.
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Loves To Fly, Thank you for responding. I had a US guided biopsy earlier this month with a Bi-rad score of 3. They are great care providers and to be fair my surgeon told me she "could not rule out cancer" but she did not say that it was. I feel a bit jarred and it is frustrating that no one is in the office until tomorrow. I feel very stuck in a Schrodinger's cat type situation.
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Putting it in plain layperson terms:
BIRADS 0 means “looks abnormal can’t tell without further imaging.”BIRADS 1 means “normal.” BIRADS 2 means “whatever's there is benign.” BIRADS 3 means “probably benign but needs biopsy to rule out malignancy or determine just what kind of benign growth it is.” BIRADS 4 means “possibly benign but suspicious for malignancy, needs biopsy to determine which.” BIRADS 5 means “high suspicion of malignancy, needs biopsy to confirm or refute.” BIRADS 6 is reserved for growths already confirmed to be malignant. BIRADS 4 is subdivided into a, b, & c. Mine was BIRADS 4b--moderate suspicion.
Even a BIRADS 4 classification can have as much as an 80% chance of being benign. Don’t panic! Your doctor’s office was being premature or even careless--no way to determine a BIRADS 3 is cancer without a biopsy.
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IHGJAnn- welcome. Your tumor stats are like mine. Make sure you have your doc order an Oncotesr DX on the tumor to rule out chemo. I started chemo but quit after my test score came back for no chemo. Others started out with their dic saying no chemo only to find their score recommednef chemo. You'll learn more after your lx, so make sure to be your own advocate. Most of us have experienced our dr offices taking too much time to order tests, or whatever, so we'll bring up things for you to ask your doctor. Remember, he's working for you! Good luck. We're here for you!
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Molly - I'm going to look around today for my FitBit. It got wet in the pool, and then I put it away "in a safe spot" to dry before I went to Fr for those 6 weeks. Now I can't remember where that spot was...
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My surgeon and oncologist want to take out all of the lymph nodes due to having just one lymph node with cancer that's the sentinel lymph node removal along with a lumpectomy at the same time. Done on July 29 2016 and I have had no treatment as of yet we just discussed what the treatment plans would be. And I had a full genetic testing and the ONCO test and the PET/CT Scan. All is good in these areas except one unfamiliar gene in COLON area and the ONCO test scored a 19 which is in the middle of the road but at the lower end but it didn't do much as far as give me a one way or the other when it came to treatment plans. because the benefit is mostly the same either way. Should I get the full lymph node removal that would be ALL the LYMPH NODES. God Bless everyone and lots of hugs too
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Sloan, don't you love how we can never find those safe spots? ARGH!!!
HUGS!!!
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Cinnamon68 - If your PET scan was good, why do they want to take out more lymph nodes? There are lots of women in this thread who had positive nodes and didn't do chemo. I know with the Oncotest DX it is up to 3 positive nodes for the test to be valid, and after that, the person needs chemo. Is that what the doc is trying to find out? Since your Oncotest was 19, do they want to take out more nodes to see if that score is valid? Ask the doc WHY they want too take out more nodes iif the PET scan was good.
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The Oncotype DX came back with a 19 and it said 12% Tam alone and 12% Tam + Chemo that's with 1-3 positive nodes with a 5 Year Risk of a Recurrence or Mortality. Advice needed : Should I get all the lymph nodes removed or should I get no lymph nodes removed and get Radiation Therapy and Hormone Therapy.
I have so many questions due to this TRIAL STUDY Z11 done in 2011 did anyone make a decision due to this study?
And with the one lymph node taken out the tumor deposit measured 7.0 mm in greatest dimension.
My ER score was 9.9 positive and my PR score was 6.9 positive and my HER2 score was 8.4 negative.
And my tumor I have the wrong size on my tumor it was very small it was 0.8 x 0.5 x 0.5 it also states- invasive ductal carcinoma - grade II (of grade III) not sure what this means.
Lots of love and laughs always, thank you so much for listening, sorry for all this stuff.
Hug's for everyone!!
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I had a lumpectomy on March 30th and have started having pain in my breast/ chest area within the last 3 weeks. I asked my MO & RO about it. They did a breast exam and said not to worry, but it's hard. Has anyone else had pain months after a lumpectomy? I had a negative sentinel node biopsy, but could this be nodes in my chest or something? I finished TCH 18 days ago and will start radiation tx in 2 weeks.
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Hi ChiSandy
Thank you for your feed back.........I live in Gurnee, IL so we're neighbors kinda of but my kids live in the city.
I'm feeling very alone on this journey even though I have family and my man to care for me but I still feel lost with all this. I feel like I talk more to strangers about this at times sorta crazy I guess. Just wanted to thank for the feed back.
Blessings to everyone!!
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Peggy - I found the FitBit, but now the small plug doesn't fit into it. Maybe the water wrecked it. Sheesh.
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Thank you so much Sloan15 for your feed back on all this I don't want to deal with going under the knife if I really don't have to.
So I am trying to do the research on all of this and I don't want to go through CHEMO if I don't have to and if I my survival rate is the same then why would I want to put more chemicals in my body if I don't have to. In the end this is a hard decision never the less. HELP!!
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cinnamon could they do something less intrusive than a full length node dissection, maybe go in and take a couple more? I had two taken the first one had micrometastases the second didn't, it was never suggested to remove more (though I did have Chemo).
I don't know the study you are referring to.
Saedie bi-rad score is from imaging, not biopsy results-biopsy should give you a definite answer on whether it is benign or not (and if it doesn't for some reason, lumpectomy would likely be the next step). Where you ever given those before surgery was booked?
Sfar My lumpectomy boob often gets hard bruised feeling spots near the incision area, they come and go and MO says not to worry it's normal
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Loverofbooks, I've had 3 hip replacements, (all metal) a knee replacement (partial metal) and have 3 screws and a metal plate in my foot. I've had no problem at all with MRIs, including the breast MRI. The only thing that the metal was an issue for was my bone density scan. The tech could only scan my back but not my hips. Ask your doctor. I always let them know about my "bionics" but they've never not done the tests. (And so far have never been yanked up against the magnet! ha ha :-) )
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PontiacPeggy, Thank you for giving the book recommendation and for your support. As I said in my previous post I had an ultrasound guided biopsy done on my 7.7cm x 4.7cm mass back on, 8/03/2016. This is not my first introduction to personal breast health issues but the first time I was shown I had a diagnosis of breast cancer. I understand the bi rad system since I am have been a practicing LPN for the past 10-years. I am also a full-time RN student, however with that being said. No one should expect to hear a diagnosis of breast cancer when they are at their pre-operative appointment without prior mention or discussion from the surgeon. My breast health issue has been ongoing since last spring. I have been passed off and misdiagnosed with mastitis which needless to say has been prolonged this whole ordeal.
I would like to think that medical errors (which is what I think happened this past Friday) would not occur to anyone. I feel bad for the CRNP conducting the pre-op exam and discussing my procedure because I stopped her by saying, "Um, excuse me who diagnosed me with breast cancer?" She was just as floored as I was. In all my years of lumpectomies, mammograms, ultrasounds, and biopsies this has been a first. So, yes what was said to me Friday at my appointment did create a, "WTF" moment. However, this is not "panic" as someone suggested. My breast keeps enlarging to 1 1/2 to 2 times its normal size, Right breast only, it turns red, I have lymphedema that goes from my right chest to my Right arm. I have been going to lymphedema therapy since June. Those women are amazing I might add. There are times when my Right chest feels so heavy that I feel that I cannot breath. I am tired and cannot exercise like I used to or go hiking without becoming extremely short of breath. So, when she said "breast cancer" I was like, "Hold the phone!" I see my upcoming surgery on, 9/09/16 as light at the end of tunnel. When someone hypothetically pulls that rug out from under you, well it sucks!
I have to wear a bra almost 24/7 to keep my swelling "under control". I have dealt with a physician that wanted nothing more to pass me off and prescribe me herbal supplements. "Panic" No, Frustration YES!
I am happy that I found this discussion board that allows me to contact other women who may have had a similar experience prior to surgery. I am glad that I have found supportive women who are non-judgmental and caring. I really need a sounding board which is incredibly helpful!!
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Saedie (and all our new members), PLEASE PLEASE PLEASE fill out your profile and make it public. As you can guess from reading even a few posts, it moves fast here and we have a hard time remember everyone's particulars. When they are in your public profile then we can refer to them and people with similar diagnoses can respond to your questions. The more we know about you, the better we can help. Saedie, you nailed it when you said we are non-judgmental and caring. We DO care and we want to help. Please feel free to rant, cry or hooray here. We have all been there.
HUGS!
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PontiacPeggy, *BIG HUGS* Thank you very very much!!
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Gosh, Cinnamon, removing all your lymph nodes is a very serious step. I think before I agreed to that I'd want a second, and maybe third, opinion. The more nodes you have removed, the higher your risk of lymphedema, which is pretty nasty. Do not let yourself get pressured into anything until you finish your research.
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Saedie, your experience is simply unacceptable!!! I am so sorry you have gone through this and continue to feel so frustrated, with good reason! Do you have options for your MO and BS? Did you have a lumpectomy in the past? We're all here thinking of you and hoping the stress is eased soon, and that you get the care and solution for the problem. I hope you reported what happened last Friday! Keep us posted. Dara
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Saedie, I tend to harp. Sorry. We now know where you are and that helps too. You can tell that we really do want to help, especially to find the questions you need to ask so you can get the answers you need to make an informed decision. Don't let anyone push you to make a decision on anything. You have time. And if you don't like the answers you're getting, get 2nd and 3rd opinions. It's your body. And once something is removed, they can't put it back! But once you have all the answers you need and the information and you do make a decision (any decision), don't look back. You will have made it with the best information available and what you are comfortable with. You'll truly go crazy otherwise.
HUGS!
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Cinnamon, is the MammoPrint an option? My oncotype was 20 so I wasn't going to do chemo. My MO ordered the Prosigna and it came back high risk. MammoPrint and Prosigna can help with those of us in the intermediate onco range. It's another week or two wait, but I felt I really wanted to have as much information as possible to make my decision and I didn't want to look back someday and say what if...
It's a really hard decision, and certainly not one any of us want to have to make. Feel free to keep talking through your thoughts with all of us.
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LovesToFly: Thanks, it is a relief to hear you have had similar issues.
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Sfar, It IS a relief to find someone who has walked the same path you are on. You feel so less alone.
HUGS!
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