Lumpectomy Lounge....let's talk!
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Thanks Ladies. I do have pictures of the two reports that my GP got back the week later, but they don't have all the info, like the ER/PR/Her2 stuff. That was only a week after my biopsy, so I thought those took longer? I did meet the surgeon, but she didn't mention those things either. Maybe when I go on Friday I can ask? Or will I have to wait until my check after the surgery now? Or maybe I'm just not reading the ones I do have right.
I'll look up that book; I've been reading The New Generation breast Cancer Book by Lisa Port, MD. It was the most recent (2015) I could find at the library. It seems pretty thorough, but knowledge is never bad in my eyes. I know someone said possible Tamoxifen later too. They are also suggesting I get the gene testing done, as I'm third generation to get breast cancer. Not sure if I want to do that yet. One thing at a time.
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Poodles, might it be another seroma….or even a blister from the mastectomy bra?
Leslie, hormone-receptor status is usually ascertainable from a biopsy sample. It should be in your path report, so ask for a copy. As to what comes next after lumpectomy, you will definitely get radiation—but “when" will depend on your final surgical path results. Even if you are node-negative with clear margins and ER+/PR+/HER2-, the size of your tumor (>1cm) would put you in the “gray area" for which OncotypeDX testing is ordered (and for which it was developed)—at least here in the States. I understand from some of our Canadian BCO sisters that your country's NHS doesn't always pay for it, and it's not cheap. But if it saves you the rigors (and the NHS the cost) of unnecessary chemo, it's worth every penny. Should you need chemo, that is given before radiation; and if endocrine therapy is necessary, you're usually allowed to get some healing time after radiation before starting that “long haul."
This is a lazy weekend for me—check on the tomatoes to make sure the squirrels don't get 'em, pick up some odds & ends at the grocery store, do some writing & puzzles (got three new diagramless crosswords anthologies!); and tomorrow night, go to temple for Rosh Hashonah. A friend from Texas is playing at Uncommon Ground in Wrigleyville tonight. Cubs are away in Cincy, so I might actually be able to find street parking. I could take Uber, but that's way pricier than even Chicago's parking meter rates; the club is too far from the Red Line to walk and the Clark St. bus is too far from my house and takes for-freaking-ever. Besides, if Bob gets home for dinner and would rather not go out to hear folk music (heck, he never even goes to my own gigs), game over. He’s usually home so late that we need to spend whatever time we can together.
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Ok, filled out the DX / treatment area. I picked IDC...is that right? I'm confused, because the report says Invasive ductal carcinoma with focal lobular features. So it's ductal, not lobular...I think.
It also says the tissue block has been sent for receptor studies, so when I got this, the other stuff wasn't in yet. I guess I should have asked the surgeon when I met her.
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Leslie, do you have an online patient portal or your surgeon's e-mail address? You can find out that way. I guess that for financial efficiency reasons, Canada's national health system takes longer to process pathology results or perhaps does the path piecemeal. Did your report give the grade? You should at least have been told that.
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Nope, no online patient portal that I've been told about. Would my GP have copies of all the reports? I know if I called his receptionist she will make me copies of everything that is in now. I don't see anything that says grade. I have a picture of the medical imaging CONSULTATION and the Pathologist's diagnosis, but it just says the tissue block has been sent for receptor studies...I don't see anything about grade.
I thought I was doing really well with info and having everything move along so well...now I feel like I missed something. Not quite as good as I thought!
Oh...yes, they did say I would be having radiation after...15-25 sessions, based on findings after the surgery.
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Peggy, I can make my own garb. Don't want to change every day. Get in and get out. Sandy, jealous of you hopping around my city. Me, hopping around corn, flat land........
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Leslie, you've done very well gathering information. The problem is that when we start out on BC, we don't know what we don't know. It's hard to ask questions you don't know you should ask. Since you are 3rd generation BC, you really should consider genetic testing. That could change how your treatment is approached. And I agree with Sandy that you press for Oncotype testing. The more information about your tumor you have, the better informed your decisions will be. The Oncotype test will give an indication if chemo is needed. While no one wants chemo, we all want to do everything possible to KILL CANCER.
HUGS!
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Leslie, welcome. You've come to the right place. This thread is very positive, informative & uplifting.
Got back from Michigan work trip last night. Was a long short trip. Rained the whole time. Took forever to drive home between rain & road construction. Was stuck in construction stop & go & car behind me got rear ended. Luckily didn't get into me. Ran errands today. Not much else going on. Got my Post BC mammogram scheduled, Nov 8. See my BS Nov 17 & MO Nov 18. Don't see RO again until February.
Hope you all are able to enjoy a relaxing, stress free weekend.
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I wore my normal clothes—even bras—to my radiation treatments. Had to wear the hospital gowns, since we had to either sit in the post-changing waiting room or go from the changing-rooms to the rads chamber via a common area. (We were allowed to wrap the gowns in the front since our front was what needed to be exposed—and it was a lot more dignified in the waiting room or walking into the rads chamber than having our butts flapping in the breeze. Could’ve double-gowned, but that was silly and required an extra step before & after the treatments—time was of the essence, as we were pretty much herded through the process. (“Move ‘em up, head ‘em out….Rawhide!”)!!!
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Hi Leslie -- Where are you getting your treatment? I'm getting mine at the Juravinski Cancer Center in Hamilton.
Read this website well. It will give you much of the information you will need before you go to see your MO for the first time and allow you to understand most of what he says.
Sorry I came late to the conv and did not see the full chai
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Hi Elizabeth. I will be going to the Cancer center in Southlake Hospital, Newmarket.
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Welcome Leslie, but sorry we all have to meet under these circumstances. We are all at different stages of diagnosis, surgery, and treatment. This is just the best thread for anyone who has had or is having a lumpectomy. Feel free to ask any questions, vent, or just share what's going on. We all remember these first days that seem like a whirlwind/nightmare/chaos. Just know that the waiting is the hardest, especially for all the reports and pathologies. We're all here for you and we become friends. You have a safe supportive place here. Dara
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From my understanding, your pants, socks, shoes stay on. That is why I was going to make t shirt gown tops.
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Michelle, that true. I didn't find it a problem throwing on a gown that was going to be off anyway. I guess I couldn't have seen a reason to bother to make tops even if I'd thought of it. But no reason not to if you want. You can see how it works for you.
HUGS!
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Michelle_in_cornland - I think that even if I had brought my own 'radiation wear' to my treatments, they would not have allowed me to use them. You might want to double check that it would be okay before you go to the trouble of sewing anything. I hope whatever you end up wearing that you have an easy time of it.
ps - I was often in and out of there in 25 minutes. Mine took longer this time because it was on the left side and I had to do some special breathing during the treatment.
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Sandy, LE question for you. How do you tell if you have mild LE? Yesterday I had some edema in my left arm that caused my fitbit to be so tight that every hole on the band caused swollen bumps like blisters. I took it off and still have one area still swollen and red even today. I don't wear it tight at all so I was shocked at how tight it was. I am worried that I am developing LE.
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Hi ladies! Whew took me forever to catch up on missed posts! Welcome Leslie and anyone else new that I missed! Dara, glad you are almost done with your chemo! Keeping my fingers crossed for easy rads for you!
I finished my rads on Monday 9/27! Woo-hoo!!! Other than about a full week of nipple swelling/pain and skin issues the rest went ok. The back and forth was exhausting but didn't really experience the intense exhaustion I was expecting. Doc was pretty impressed with how well I did. It is worth mentioning that I am vey busy all the time and am used to being tired...ugh. I'm sure that rads after chemo has already worn you down intensifies things.
I see my primary doc Monday to get her take on whether I should "opt" to take Tamoxifen. Unless she has something different than I've already heard or read I think I'll pass!
Thinking of you all. Congrats to those of you with good results who are avoiding chemo. Hugs to those who are facing chemo. I will try to log on more often. My mom had a kidney infection so I've been taking to Appts and dealing with all the associated issues. On top of everything else we're dealing with protests for a local officer shooting of an unarmed black man who was having a mental breakdown. Unfortunately he pointed a smoking device at the officer which looked a lot like a gun. The officer instantly fired at him, killing him in front of his sister who called the police for help. So unfortunate all the way around. My DH has been on the front line in riot gear each evening for the last three nights. So stressful! I work in the courthouse which is ajacent to the police dept involved. Been a very intense week! Courthouse closed early Friday to get us out of area before the protesters started in again.
Sorry such a long post! Hugs to all!0 -
KD - I really like your wig! The color goes really well with your eyebrows! Looks very natural to me!!!
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Molly, my first suspicion I had LE was last Dec. when I was up in Taormina, Sicily, in the mts. near Mt. Etna. When we got back on the tour bus to return to our ship, my upper right arm felt sort of tight, like it had begun to swell. Then when we began to descend, the tightness started to disappear. And on our return flight from Amsterdam, I also noticed that my rings were very tight despite my wearing a gauntlet. (Of course, it was probably due in part to the gauntlet being too short, and the food being pretty salty—as food has to be at that altitude because your tastebuds are shot. And in retrospect, my left hand rings were probably tight too).
After I’d had my first cording episode in mid-Nov. I had made an appt. with an LE specialist for early Jan. He was skeptical that I had LE until I described that arm swelling in Italy and finger swelling on the plane—so he diagnosed it as “subclinical,” or stage 0 LE. A couple days after my second therapy session, I was grating hard cheese and my forearm felt tight, and I had to twist hard to remove my ring. And I was getting “pitting,” where I’d press on my forearm for 10 seconds and there’d be a dent that took a few seconds to fill back in. That’s how I knew it was real LE—I put my compression on and a couple of hours later, my ring was loose again. My LE therapist said my flares were stage 1.
But is it edema or lymphedema? If it’s bilateral and you had only one side’s nodes removed, and especially if you are noticing your feet swell too, it’s probably edema. If it’s limited to the quadrant where you had your surgery and nodes removed, and the other arm is fine, it’s probably LE. If you notice tightness in that arm when a storm is coming or it’s already storming, or if you’re ascending rapidly (like in a skyscraper elevator), it’s probably LE—especially if you get sinus pressure when the barometer drops and that’s happening when your left arm swells, that’s almost certainly LE. If you had edema in your right arm when you had the Fitbit episode in your left, it’s probably edema.
Were you measured for a sleeve & gauntlet before your surgery? If so, maybe now is the time to buy them. (You might need to be re-measured). You should call your primary to rule out regular edema (unfortunately, to rule LE in or out, your primary might not be much help because not all that many doctors are taught about LE). Your breast surgeon might be a better doc to consult. And City of Hope almost certainly has at least one LE specialist on staff, as well as several therapists. One thing to do is to have them teach you to do manual lymphatic drainage massage (aka MLD—which is more like gentle stroking than like true massage). It can work wonders.
Good luck and let me know how it goes.
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Beeb, congrats on finishing rads! So glad you didn't have any major se.
Dara, good luck with your last round of chemo
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Ok, I ordered Dr Susan Love's Breast Book. They only have the 2010 version in the store; I decided I wanted the Sept 2015 addition. It said it should be here by Wednesday. Thanks for the recommendation!
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The 2015 version is available on Kindle—which, via the free Kindle app, you can read on your computer or any mobile device, not just an actual Kindle.
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Hi Ladies,
Quick question: Does anyone ever feel pain in their incision site. My surgery was over a year ago, however lately I've been feeling dull achy pains. Thoughts?
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All I had to take off was my top and bra...changed into a gown that opened in the back- and, right before getting on the rads table I untied it and the techs moved it and opened it up to expose the area being radiated. They were so wonderful about it all...the whole rads team was great! Hoping the same for all of you getting ready to start!
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My gown for radiation. Had to personalize.
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That's so cute, Michelle
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Thanks Molly. It opens in the back and I will have a white tube top underneath made from the shirt the ties came from.
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Hi Blinki, I have never had GERD that is one side effect I did not have. I was also on the generic Arimidex. Some of the gals say the manufacturer of the generic could be causing some of the side effects because of the fillers. I had been on Arimedex since April . My side effects came on more gradual. By the time I was on my trip it hit me hard but I blamed everything but the meds. when I got home and still got worse, it finally dawned on me that it might be the meds. my GP put me on two inhalers. Albuterol and Brea. I have been off f Arimedex for a month.my hips still ache and I am still stiff but I am getting better slowly. How are you feeling? I wonder how long it takes to leave the sustem
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Had the most fabulous time today with my BCO Sisters and Sisters who are not BCO. From out of town had Katzpjays, Sloan (plus her DH and father) and Moondust (and her cousin Linda). Here in Spokane IHGJAnn, and non-BCO'er Marion. They all came to my house and we had such fun getting to know each other in person, having a bit of wine to celebrate and goodies. I'm feeling especially blessed to have such great people in my life. Here we are:
From the left: Moondust's cousin Linda, Sloan, Moondust, me, Katzpjays, non-member Marion (2 time survivor) and IHGJAnn.
Then we all went out to dinner. At no time did we ever stop talking. And the men weren't intimidated by us either, they held their own.
Now we have to find a "destination" for our next get together!
HUGS!
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Peggy, great picture. Love all the smiles. So glad you could all get together.
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