Lumpectomy Lounge....let's talk!

octogirl

Already raining hard here, Sloan! and yes to sweaters!!! Yay!

Hugs to all of you.

Octogirl

PontiacPeggy

CintrineTiff, I also had a preliminary hormonal status too which didn't change with the Oncotype results. Sending positive thoughts that all turns out like the preliminary results indicate!

Sloan, the idea of living in SoCal is NO sweater weather Thank you for the hugs - really appreciated today.

HUGS!

brithael

Ok, so I need to get a sports bra. Think that it should be front opening. The girls are big now - DD, who's got a good brand?

HappyHammer

Brithael..I got 2 front zip (weird right) sports bras before the LUMP 2 weeks ago...they reallay have been great and very comfy! Good luck to you!

Molly50

Hooray for rain and cool weather!!!

ChiSandy

Brithael, if you’re only a DD you should be able to find something by Playtex. I actually got a couple of Playtex 44DDs at Kohl’s, fairly cheaply. There’s a concept in the lingerie biz called “sister sizing,” based on the principle that the larger the band size, the larger the cup itself, because cups are sized relative to the band. The cup in a 34DD is much smaller than that in a 38DD. Therefore, as a 38H I can wear a 40G, 42F/DDD or 44E/DD. That doesn’t really work in a normal dress bra, because the band would ride up and your breasts might--though fully contained in the cup--be sitting at half-mast. (In a pinch, you could have the band cut down to your true size). But front-close sports bras are more supportive because the back comes up higher and in DD and up, there are usually at least 6 hooks. Glamorise and Freya also make good, non-wired front-close bras in larger cup sizes (I even have the Freya in a J, from when I was heavier). If you’re used to perky sexy bras with the center lying flat against your chest and the girls standing at attention--i.e., the apex being halfway between shoulder and elbow, you’ll be disappointed (even if the sports bra is your correct size). But under clothing (not low-cut, since the bra will show) the silhouette’s not bad. If you want something softer with a bit less support for sleeping in, Leading Lady makes front-close bras in a variety of pastel colors as well as black and b/w polka dots. (However, the cups have a vertical dart from the bottom to the nipple area, which occasionally irritates and leaves an impression). If you can handle a back-closing bra, comfy soft-cup ones are available at Lane Bryant (I got a back-closing sports bra in 38H) as well as the unfortunately-named “Awareness” bra (beige or black) by Wacoal. I wear my regular underwires during the day, and have grown to like sleeping in a bra--so I rotate the Playtex front-close, Wacoal Awareness, and Lane Bryant (aka Cacique) for sleep. Doesn’t hurt that I can answer the door in scrubs (or t-shirt and bike shorts) and it doesn’t look like I’ve been wearing PJs all day.

A word of warning about soft-cup bras for larger breasts: some of them (Elila, Glamorise “Magic Lift") have a stiff nonwoven fabric sling encircling the inside of the cups in lieu of underwire. I find that sling rather scratchy, and it irritates me more than my underwires. Steer clear of lace cups too--I find them scratchy. The Wacoal Awareness, Freya and Playtex soft cup bras’ linings are totally smooth and soft, with the Cacique not far behind.

You can also shop online for these bras at HerRoom.com, BareNecessities.com, Hanes, Figleaves.com (UK sizing--they have conversion charts). They tend to be cheaper online. If you want to be pampered, go to Rigby & Peller in Oakbrook or at 900 N. Michigan (used to be called “Intimacy”) for a custom fitting. Since you’re only a DD (assuming that’s your true size), your options for finding nicer bras without underwires are greater than mine.

As Rina pointed out, 13 has different numerological connotations in different cultures. So I wouldn’t sweat that.......unless your anesthesiologist is wearing a hockey mask or (instead of a scalpel or endoscope) your surgeon is wielding a chainsaw.

brithael

ChiSandy - I ordered a Playtex from Amazon which will be here Thurs., but I wasn't too sure about the sizing since they didn't offer cup sizes. The reviews were all over the place, but it's free return. If it works, I'll get some more, if not, more shopping.Thanks for your recommendations. I have to wear one 24/7 til the 23rd when I have my post-op. Here's to clear margins!

Love it that you say "only a DD." I feel HUGE, can only hope that the lumpectomy will reduce leftie in size, so I can get a reduction in rightie eventually. I haven't been creative enough to name them like you. If they wind up different sizes, I guess I could call them Abbot and Costello.

I'll watch for the hockey mask and the chainsaw or if anybody's named Freddie.

octogirl

On the topic of bras, from another DD (40DD): I completely agree with ChiSandy about looking out for fabric or lace on the inside of the cup: anything but very smooth cotton was really irritating after my lx, and in fact still is: I've never had particularly sensitive skin but my skin went crazy...fabric on the inside of the cup, or even on the outside if it was extensive, was a much bigger irritant to me that the underwire, although those were irritating as well. I also developed a sensitivity or allergy to adhesive from bandages. I found a plain Bali cotton bra without underwires (which wasn't easy to find, but is out there) and lived in that.

However, I did not bother with front close bras and didn't feel the need for them....I don't notice a difference in support and since I put on my bra by fastening in front and twisting it around, it didn't seem to make a difference for me. Finding front close bras would have added to my challenge in searching for something that worked...

In fact, if you scroll back about two or so months you can find a sort of amusing discussion of how we all put on our bras. Our fearless leader Peggy was supposed to survey her former classmates at a reunion, IIRC, but she was having too much fun to do so! :-)

Hugs

Octogirl

PontiacPeggy

Octogirl, I really did drop the ball on that one.

HUGS!

Sloan15

Bra Ed 101 right here on this thread! You ladies should do reviews on Amazon!

PontiacPeggy

Sloan, TMI for Amazon. Besides only we BCO'ers get it and why it matters

HUGS!

HappyHammer

Agreed that the reg Amazon buyer may say TMI but good golly...you gals are awesome as far as sharing info and details for those who REALLY need to scoop! Thank you!

PontiacPeggy

HappyHammer, that's what we aim for here!

HUGS!

Waterstreet

Sloan15 I'm in that waiting cycle with you. I had my appointment and found out some information but not at all what I expected. My BS was not in the meeting but I met with the RO who will choose the meds to address the hormone issues. He doesn't want to start them till January. He called the RO for the Brachytherapy to get me set up for that. They removed all of the IDC mass and found a DCIS mass in a milk duct, which they also removed. Only one lymph node was involved and it was removed. So now its back to the waiting game. Good news for the most part, but why was the DCIS not seen before? I know its not cancer but the RO said it was ready to become cancer, in all the reading I have done I never came across this. The RO spoke for the surgeon and himself. (He said) The RO wants a bone density test done before he will prescribe the pills. I have to drive 80miles to get the test and they gave me an 8 am appt. I have never been to the town I have to go to and I am stressing alreadyabout this.

They removed Chemotherapy from the list which my BS sold me on due to the Ri67 results on how fast the cells were splitting. Its hard to have only part of the team show up because I can't get answers.Please pray for me cause I am really having a hard time dealing with todays events. This just took me by suprise. I had a 9:40 appt and we didn't meet till 11:25. I am so drained and so upset and then I asked for the pathology report from the surgery and he said they don't give patient copies. So I went to records and what I was given was to pages of the 8 pages they had on their computer. That made me madder. To top it all off I got the test results back from the tests my BS's nurse ordered and it appears my kidneys are having problems and I called to ask what do I do about the results to get them addressed and she said to make an appointment with my PCP. He is booked till next year. I am going to bed I am just worn out.

Waterstreet

Molly50 You are really ready for the rain and cool weather? It makes me hurt all over at this point. I couldhave used another week or two. We are supposed to get rough weather starting tomorrow night, I am keeping the matress warmer on my bed.

HappyHammer

Waterstreet...am with you about the conflicting inf. Hope you did go to bed and are sleeping as I KNOW sleep is recuperative, especially after al you have been through. Hugs to you!

Waterstreet

HappyHammer… My head hit the pillows and I just looked at the ceiling and got back up. I think I will have a shot glass of wine and see if that helps.

PontiacPeggy

Shirley, that's outrageous! Those records and reports are YOURS. You are not the "little lady" needing to be sheltered from the realities of the big, bad world. I'd have blown a gasket! I would guess you're not real happy with any of your docs at this point. I'd have been worn out too. Good luck!

HUGS!!

PontiacPeggy

Shirley, wine helps EVERYTHING!!!!

HUGS!

Waterstreet

PontiacPeggy Yes I am mad and I really have no plan of action yet but I will have one. I don't know how your supposed to trust any of them after all that happened today. I did find out the targeted therapy is the Brachytherapy. Implanting the radiation in the cavity the mass used to live in. Its almost like going to a HMO again.

I have made one decision tonight I am copying my test results they sent after I got home and taking them to the kidney doctor tomorrow. I can't do much if my kidneys are working right. After that I will figure out what to do next about the cancer.

You take care and I will keep you posted any ideas are welcome. I am going to have a shot of wine and see if I can get some sleep.

PontiacPeggy

Shirley, I think I would have a huge trust issue. I am so baffled by the ROs not being willing to give you your path reports. So you did get the test results? They emailed them to you? I would definitely take them to the kidney doctor. If you're not having chemo, I would guess that nothing else will bother the kidneys. Good luck getting sleep. When I'm wound up like I suspect you are, sleep is often elusive. Read or play solitaire or do jigsaw puzzles on your tablet. They all are calming. Re-reading a favorite book is always good (with your wine, of course).

HUGS!

marijen

Waterstreet you may just have a kidney or bladder infection. Lots of water until you see the doc. That group you are dealing with seems to be in disarray

octogirl

Waterstreet, it is a violation of HIPAA (federal law) not to give you access to your records. Your docs' attitude on that alone would be enough to have me seriously considering changing providers. I'd be furious! Sounds like you got part of them from records but even the fact that they don't appear to understand that you have a right to those records would give me pause.

I hope you get some rest tonight so you can tackle this tomorrow!

By the way, one of the things my MO said to me on first visit was that 'for the duration' of treatment, to consider him my PCP....that he'd be overseeing treatment or referrals for other 'stuff' that came along. I like that approach because it helps coordinate the care I need.

For that matter, it seems unusual to have the RO (and not a MO) overseeing the hormonal drugs...(?)

However, you decide to address it, I'd recommend that you consider taking someone with you to the next appointment, to take notes. Do you have a friend or family member who can do this? (or did you have someone with you?). I find it really helps to have someone else there....it is just so much to process without that kind of help.

More on HIPAA:

https://www.healthit.gov/patients-families/faqs/wh...

Hugs!

Octogirl

PontiacPeggy

I'm with you Octogirl. My MO never said anything like he was my PCP so I've kept mine but everyone seems to be on the same page. And getting my records is a breeze since they are available on the hospital's website and I make sure I do most everything there. And I request copies of what is done out of the hospital. I keep hardcopies of everything as well as records in DropBox. Shirley, we'll support you if you decide you need to look elsewhere for your care.

HUGS!

Molly50

Shirley, you can also get the full pathology report from the hospital where you had your surgery. I would seriously consider getting another RO. Why isn't your MO driving this machine for you? My cancer center is handling all of my referrals right now. My gyn who was coordinating my care said that it is that way until I am done with active treatment. Sending you huge hugs.

octogirl

Peggy: having the records on line is nice: the hospital where I had my surgery does that...and I found it very convenient. MO doesn't use online access but they are quick to give me copied of everything when I ask, and for important stuff and test results, even if I don't ask. He always has a copy for me of anything he wants to discuss..

HUGS!

Octogirl

keepwalking

Shirley - So sorry to hear you had such a rough day. It is so frustrating to have conflicting and confusing information and to not feel like you understand where they are taking you and why. I hope you had your glass of wine (or 2!) and that you are sleeping peacefully.

Just to chime in on the copies of test results - that would infuriate me to no end to be told that I can't have them!!!! I am so glad that here they not only give test results to patients, but actually expect that you will be your own repository for these things! If I have tests or doctor visits within my health fund the results and reports are all on the computer. If I go to doctors outside my health fund (my BC group is outside), I am given the test results and carry them with me in case I need them for other doctors (in or out of fund). When I received the call that I had cancer, the doctor immediately asked for my fax number to fax a copy of the pathology report to me.

You might want to inquire as to why they are not requesting an Oncotype DX. According to studies, it is a better indicator of recurrence risk than the Ki67 alone. The link below has the charts. For those that aren't chart readers it says that in a study of about 2500 patients, they looked at how many patients with low Ki67 received Oncotype scores in the low, med, and high ranges. Of those with Ki67 scores of less than 14, 60% had low scores, 35% medium, and 5% high. If they grouped it into patients with Ki67 less than 20, the percentages were 57% low scores, 37% medium, and 6% high So, even with a low Ki67, there is a significant chance of having a medium Oncotype score (fuzzy range - chemo would be determined based on your individual factors) and a low, but real chance of having a high score (chemo would improve chances of cancer not recurring).

Oncotype DX Comparison Studies

It could be that your oncologist is looking at your medical status (including what he mentioned about your kidneys) and reasoning that if you fell into the medium range he would still not recommend chemo for you. And the chance of you having a high score is very low, so he feels that making a decision on the Ki67 alone is a reasonable one. Still, if it were me I would like to be told the explanation and you have every right to ask.

I hope this was not too much information or too confusing - I do tend to be detail oriented, given my background.

Hoping all the best for you, Shirley. I hope you are rested in the morning and better equipped to sort this all out. I also hope that you will have some help and support from family and friends, and it is a good idea to have someone else with you at appointments.

BIG (gentle) HUGS to you!!! And to you all.

ChiSandy

Shirley, your doctor is calling a radiation-delivery modality (brachytherapy) “targeted therapy?” That is so wrong. “Targeted therapy” is a very specific term for a type of “biologic” medication (usually the suffix “-mab” is a giveaway) aimed specifically at the tumor itself, or at specific attributes of the tumor. Herceptin is the most familiar one, for HER2+ tumors. He may be aiming the radiation at a very narrow area specific to the tumor itself (the seeds delivered to the cavity via those catheters), but even though that may be “targeted” in plain, layperson English that’s not what “targeted” means oncologically speaking. Sounds like a second opinion might be in order.

Brithael, I got two of my Playtexes off the shelf at Kohl’s, but I got the front-hook ones from the Hanes Her Way website--and they gave size info. Carson Pirie Scott has the Playtex front-zip ones too. Personally, I find front-hook bras somewhat problematic to put on over large breasts--you have to stretch them over some rather post-operatively-sensitive territory, and with my presbyopic eyes it’s a challenge to fasten six or seven pairs of hooks and eyes EXACTLY the same color as the bra fabric in that close a field of vision. Rear-hook is comparatively easy for me: slip the bra on, bend over and let the girls fall into the cups, then fasten the rear hooks (no more than 4, usually only 3 or even 2) by touch. Of course, if your surgery leaves you too sore to reach around back (mine didn’t), you might be stuck with front-close. The Playtexes (even found a rear-close one in navy), Wacoals and the Freya front-close sports bra all have smooth soft seamless linings, and none of them have underwires or side boning.

And I found out today why “Louise” is sensitive up front, nowhere near the incision, and hasn’t shrunk any despite having had a chunk the size and shape of a Double Stuf Oreo removed. Before my second radiation session, they traced a 3-4” radius circle with washable marker around my nipple and shot an X-ray. Had my weekly meeting with the RO, and he told me that there’s a “rather large” (his words) seroma not only filling the tumor cavity but much of the breast itself. (It’s almost as if “Louise,” having been a cup size smaller than “Thelma" to begin with, wants to even the score). He said that “nature abhors a vacuum,” which is why tumor cavities usually get filled by seromas that will resorb over time....with the breast eventually settling into its new size and shape. (If that happens, I’ve already decided against reducing “Thelma” to match; and that reconstruction can lead to more seroma formation, so I may buy a “shell” partial form or just use the removable pads that had lined my old too-small drugstore Genie bra).

ChiSandy

Should also mention that I got the name of the Hanes website (where they sell Playtex bras, listing band AND cup size) wrong. It's OneHanesPlace.com

queenmomcat

A second vote for OneHanesPlace: they carry a wide range of cup sizes and often have sales.