Lumpectomy Lounge....let's talk!

PontiacPeggy

1Step, I have multiple drug allergies and wear a bracelet like this Medic Alert Bracelet. I also have nickel allergies. There is no metal touching you. I have 3 - one black, one purple and one flag. They wear well. I've belonged to MedicAlert for 50+ years. I do have a sterling bracelet from them I wear when I want to be dressier. You might want to take a look. It's a great organization. BTW, I have to call them to add that I do not want BP or injections done on my "bad" side (on my list for tomorrow).

HUGS!

MLP3

Touché LTF

LovesToFly

Sorry I didn't mean to be rude, just that my breast surgeon said I don't really need to worry much about lymphedema, with only two lymph nodes taken. That said, I know that I should worry about it a bit, so anything I have control over I certainly am not using my right side…but I'm not sure that I'm too worried about it in a medical emergency.

Like most things, people need to speak to their doctors, and decide what they are comfortable with.

*If I get lymphedema, I can get one of those funky tattoo sleeves (colleague has one, she had a full lymph node dissection unfortunately did get lymphedema)! I'm hoping to avoid it though.

mairew

LTF, how are you feeling tonight?

I only had one node out, so I am very low risk for LE but I do ask the nurses to use the left arm. Like LTF said in an emergency situation I probably wont care.

Weird, I am vegetarian leaning vegan. Love all the recipes. Need to pull my vitamix out.

LovesToFly

I'm feeling OK. I started feeling a bit queasy around five, I took an anti-nauseant to right away, and then was OK.

Adam is working late (he is an accountant, grr tax season is starting) so I was able to cook for the kids and eat some dinner. I don't feel 100%, I feel a bit off, but I can't exactly explain why! Nothing specific is a really long, just a bit wired from the steroids! Last cycle I stalled on the antinauseants (I don't even know why!!), and by this time I was a fetal ball on the couch! Live and learn!

If anybody is thinking of becoming vegan, I am part of a group on Facebook called trying vegan, it is for people in transition. It is a wonderfully supportive group, that helps come up with ways to make the transition easier, and does not shaming towards people that aren't quite there yet.

I was pescetarian (fish eating) from the time I was 15, stopped eating fish a couple years ago, and stopped eating dairy/eggs right around the same time I found the lump (it was sort of a coincidence, I was already transitioning). I love being vegan, but it's not for everybody, most of my household is not! One daughter is vegetarian, my husband and the other daughter would eat anything, as long as it's kosher (I'm not kosher lol!)

1step

Peggy- Thanks. I always like to be prepared.

LTFly- I'll definitely talk to my surgeon about it on Friday- I had four removed. She also told my family she had to do a bit of digging (maybe so she only needed to make one incision) and placed a drain tube, which, I guess in my mind, makes me worry more about LE risk. Probably has no bearing, but I think my mind just made an automatic conclusion. Probably due, in part, to not anticipating a drain in the first place. Happy for you that taking the anti-nausea seems to have helped you be functional tonight. Boo, tax season.

I don't know that I would ever be willing to go vegetarian/vegan, but I love finding creative recipes for vegetables.

HappyHammer

1Step- It's MaryMallette on FitBit...does that work or do you need email? And as far as a medic alert bracelet- I like MLP's suggestion...something from Tiffany's...surely they could do something that would work for your allergies!

ayr1016

MLP! Love the recipes. Going to try them and will let you know how it goes. I plan to start a garden this Spring as well. First time trying, we shall see if I have a green thumb or not. ha. After diagnosis, I have really tried to start eating cleaner and mostly organic. Interesting thing that has happened since eliminating sugar is that baked sweet potatoes now taste like candy to me. Nothing added, just plain baked. I was amused by this. I craved sugar before, now I don't.

THANK YOU ladies for the replies to my question ... and I did not know about the blood draw either. That totally bums me out. My ONE good fat juicy vein for blood draws and IVs is in my left arm I had two blood draws Friday. One in the left on that good vein, but she missed. I asked her if she was new and she told me she was "re-training". Needless to say, someone else did the right arm (which has hiding, disappearing, weak, little veins) blood draw and it was not good. I ended up bruising quite a bit after and it took forever. She even commented how the blood was just "drip.....drip.....drip" into the tube. That lady told me if I had to do chemo to get a port. Because, once your veins are blown, they are blown. No growing back or repairing.

LTF, can you post the link to your trying vegan FB?

LovesToFly

https://www.facebook.com/groups/TryingVegan/

Sorry about the left veins, luckily mine seem okay. Ports are good though, very convenient and (usually) the insertion goes well.

614

Dear Praline:

Welcome and good luck.  I am glad that you found this group.  We are very supportive.

Dear 1Step:

Sorry about your mom.   Good luck with chemo.

Dear Melclarity:

You are beautiful.  Good luck again going back to work.  It is stressful after being off.

My cousin was dx with DCIS.  She is having whole breast radiation plus tamoxifen.  I wonder if that is the standard of tx now??  Many people that I know had MX when DX with DCIS.  I wish you the best of luck with your difficult decision regarding MX.  It is very disconcerting that you cannot have rads a second time.  BC, especially a recurrence, plays with your mind and causes anxiety.  At least, that is how I feel.

Dear Sloan:

My doctors told me not to take any vitamins or supplements during my tx but they said that I could take anything after my tx was complete.  Of course, my MO keeps a record of which vitamins and minerals that I am taking and she asks me about them at every appt.

Dear Molly:

I have weight gain with the anastrazole too.  I think that I am also gaining weight due to the medically induced menopause.  It really sucks.

Dear ChiSandy:

I love the recipe. I don't know whether egg creams were specific to Brooklyn or to Jewish people.  Regardless, they are DELICIOUS.  I loved the comment from, I forgot who, sorry, about not knowing about egg creams but knowing about champagne.  I laughed so hard.  Brownsville and East NY/Flatbush remind me of my job as a foster care case worker in NYC.  You mentioned vitamins and eating but not smoking herbs.  LOL/ROFL.  My son said to me, "Mom, I have a news flash for you.  Your vitamins didn't work.  You got cancer!"  (I used to take so many vitamins and minerals.  Now, I only take Calcium, Magnesium, Vitamin D, Probiotics, Fish Oil, CoQ10, and Vitamin B12.  I threw out all of the rest,  I was taking too many and I was getting naseous.)

Dear MLP:

Good for you that you eat so well.  Good for you that you had sex before and after your lx.  FWIW, I don't think that you gave out too much information.  Sorry if I am offending anyone.  I think that this is the place to share.  It is necessary.  Also, please, keep posting the Gronk pics.  I love them.  I love your dogs.  Tri-colored labs.  Dogs are the best.  Labs have great personalities.  Mine is a lab/chow mix.  She is absolutely awesome.  I am so lucky to have her.  My friend died from melanoma.  A few weeks later, my son's guinea pig died.  I brought Alfalfa to the animal hospital and I saw a sign at the hospital that said, "Woman with cancer needs a home for her dogs."  That is how I got my Mia.  It was fate.  She is the best and now, I was dx with cancer.  I am so glad that I adopted her.  I was not in the market for a dog but my kids and I are so happy that she is a part of our family.

As far as tumor size goes, the imaging tests are not always accurate.  It is common, especially with invasive lobular carcinoma for tumors to be much larger than they appear in the mammo, us, or even MRI.  The tumor may not be aggressive at all.  HOPEFULLY!  Good luck and hopefully, you will get your results soon.

Did I mention, keep the naked men pics coming??? LOL/ROFL

Dear Peggy:

Thanks for being you.  I count on you.  I'm glad that your tests went well.

LTF:

Feel well.

HH:

Good luck and feel well

Dear Brightsocks:

The date of your surgery shows now.

Dear Ary:

I agree with everyone else.  I was told to never have BP, IV's, or blood drawn on my SLN biopsy arm. Most technicians do not know about this.  You must be vocal and let them know not to use this arm.  I wear a medic alert bracelet listing my lymphedema risk.  I only had two lymph nodes removed so I am very low risk but why chance it.  I doubt that I will ever get lymphedema.  However, once you have lymphedema, it is too late.

Dear Hawaii:

Good luck.

I know that I missed several people who posted important points and questions.  Sorry that I did not respond.

I have to work late tomorrow tonight.  It will be about a 15 hour day.  I will miss a day of reading the posts.  I don't know whether I will be able to catch up on Thursday!!  However, I know that I will enjoy reading all of the posts.

Good news:  My daughter will be coming home from college this weekend.  It is my son's 17th birthday on Sunday.  Yay! My daughter is going to walk with me in the Susan G. Komen Race for the Cure.  Yay!

 

 

 

LovesToFly

614 sounds like you have a lovely weekend ahead of you! So nice that your daughter is coming to visit and doing the race with you, and happy birthday to your son!!

614

I just realized that someone posted about birth control.  Sorry that I forgot who asked the question.  I had an IUD when I had my surgery and my rads.  Luckily, I did not have chemo.  When I had my oophorectomy, I asked my gynecologist to remove my IUD.  I was medically induced into menopause so I do not have an answer for you regarding birth control.  Please ask your doctor because you do not want to chance getting pregnant while going through tx.  What I do know is that you do not want to take birth control pills because the hormones in the pill can cause BC.

614

Dear LTF:

Thanks.  I am looking forward to the weekend and spending time with my kids and my mom.

Reader425

Hi everyone just wanted to post and say thank you for sharing yourselves with us. The discussions are helpful (and amusing sometimes, says the initiator of the "prone/porn" spellchecker error). I do try to chime in when something hasn't been answered. This thread is moving so fast it is hard to keep up but I'm encouraged to virtually know so many women who are dealing with similar things.

Blessings to all, and for a good rest of the week!

Sloan15

How to know when you're done camping: Toothbrush falls on the ground, out of the containers, and rolls up against the toilet in a public restroom. Yep, done camping!

It was great to see April in LA, get lots of Fitbit walking miles in, and start 2016 without cancer. I feel so refreshed. I'll do some reading to catch up on posts. (Egg creams, prah-leens, and green juice, so lots of reading to do! Peggy, you doing okay? Saw that shortness of breath post, too!)

Praline

Now I am really bummed out! When I first talked to the surgeon I was told that my mass was very small (7mm) and I was a good candidate for a lumpectomy. He said that I would need radiation after but probably no chemo if margins and sentinel nodes were clean. I was all happy when nodes and margins came back clean and thought I was all set for just radiation. Even though I was worried about radiation, I had made peace with it.

Today I went to see my BS physician assistant/coordinator for a rash between my breasts that I could not get rid off. That is when I found out that they were considering chemo.I have an appointment with a MO February 11 to discuss chemo.It was SO unexpected. When I talked to the surgeon before surgery they already knew that my cancer was TN and Grade 3. I was so upset. I drove home in the pouring rain with tears in my eyes. I am just frazzled. I used to have a little sign on my bookshelf that read " I heard a little voice that said Cheer up, things could be worse.I cheered up, and sure enough , things got worse." Today was one of those days. lol

I am scared of chemo. I have only one kidney.I have heart valve issues . Ten years ago this month I had open heart surgery: mitral valve repair, bypass, and maze procedure to get rid of AFib. My last echo last month describes my left atrium as " seriously enlarged". I am almost 75. I am not sure if my body can take chemo, especially my heart. It is almost midnight and I am wide awake. I have to try to get some sleep. I have an appointment in the morning with my cardiologist.I called him as soon as this came up. Maybe he can calm down my fears. I know he tells it like he sees it so I'll get an honest opinion. And I value his opinion.

april25

Praline -- You will get tests and if your heart doesn't look as if it can take it, they won't go ahead with chemo. OR they might try it and cut it short if things look difficult. It really depends on what kind of chemo you will getting, too, as to how hard it is on the body... The docs may very well recommend you not get it. Just talk to them and voice your concerns and see. Of course, I wish you all the best!

Sloan -- It was so lovely seeing you. Glad you could come down with your DH to visit with your son and have a lovely camp-out at the beach! The weather has been pretty good for that, I think (only a bit on the damp side). The photo looks great!

Melclarity -- That long blonde wig looks amazing on you!

LovesToFly -- All your wigs are the coolest! (I wish I could be more playful with the whole wig thing... I just have one main wig which is pretty much my haircolor and style... only much nicer and thicker than my own hair. I have some cheap costume wigs, but have only worn them when actually in costume!)

Peggy -- You really do make this thread the best place to be. No wonder it is so busy!

--------

Yay, me! Got my port removed today! It was placed over a year ago and has served me well, but I'm being optimistic and hoping I'll never need one again. It's very liberating to have it gone.

Again, it felt like they hadn't given me anything at all to make me drowsy. I got the local anesthesia so there was no pain (aside from the stupid injections themselves which totally "pinched" as they say). A got another hunky Dr. McDreamy Radiology guy... He was tall and built and tanned with well-cut thick hair and he was talking about getting this poster of a surfing contest in Cabo San Lucas because the guy looked like him! It was hilarious! Serious, I bet he looked better than the pro-surfer on the poster. And he was talking about going skiing or snow-boarding at Jackson's Hole during the procedure. I told him I used to ski a lot and had spent a winter at Steamboat Springs, and he said he'd lived in Colorado for a while... It was all very chatty. I was awake for when I got my port placed, too, and that doctor was also a young good-looking guy! Seriously--both of them were the hottest doctors I've seen.

Anyway-- it was easier than I thought to get the port removed. They treated it like a regular surgery, though. And it was done at a hospital.

And they definitely were careful to put the bp cuff and the IV on my good arm (even though I only had 2 nodes taken). I didn't have to mention it, it was just their policy to do that.

Ate a nice dinner (my sister and BIL keep wanting to celebrate things, so she cooked and he brought home a cake). I haven't had to take anything for pain so far. Don't feel anything at all. So I have a feeling it will be easy healing. I think I didn't have problems when I got the port in... I had chemo like a day after it.

Melclarity

Thanks Everyone!! I rocked my long wig today, old colleagues were wonderful!! I had an awesome day back at work! Felt very loved!!! My goodness one day away and the thread explodes uuugh no hope to keep up. Im exhausted early night tonight!

Ayr - It's always been the case I think for most medical personnel to opt for the other arm and it was for good reasons...however...through my Chemo they used both my arms, and in fact said it doesn't matter...that they used to prefer the other arm, but is not a big deal anymore. Weird!

ChiSandy

Pennsygal, my B12 gummies are NatureMade and my multis and Cs are either VitaFusion or--when I can get them--Target’s Up & Up version.

Finally managed to get my Fitbit Surge out of the box--doing so involved the use of knives and scissors and the breaking of fingernails. My problem with it is that I keep forgetting to sync it with my phome & iPad, as well as never remembering to check my totals before the dang thing resets to zero at midnight. (As you can tell, I am definitely a night owl).

Woke up this morning with hand swelling (uh-oh), especially just below the wrist and in the space in my palm between index finger and thumb. My ring normally slips off effortlessly (in fact, when I don’t want it to), but this morning I had to twist to get it off. And just slipping my MedicAlert bracelet off (hard to work the lobster claw clasps) for my LE therapy session left marks. The therapist noticed the swelling right away. I won’t have my glove in time for my gig tomorrow night, as the shipment was delayed by Snowmageddon. And I can’t fingerpick with a gauntlet, since the fabric doesn’t cling to my palm and instead mutes the strings. So she rigged up some KinesioTape that’ll stay on through a few showers. After the MLD session, the swelling is almost gone. She says, though, that some of my thumb ROM restriction might be arthritis, due in turn to letrozole. (I’ve managed to keep most of the joint symptoms at bay by taking it at night with a couple of 8-hr Tylenol and then taking a 24-hr Celebrex in the morning). I will put the sleeve on before leaving for Madison (a 3-hr drive, 1-hr soundcheck and then the show), so I don’t have to strip off my blouse in the green room or duck into the loo.

Melclarity

Praline - My heart went out to you reading your post!!! Big Hugs!!! You are one tough cookie!!! You certainly dont have to agree with having Chemo at all...and good youre having your appt with your Cardiologist in the morning for an opinion. Good luck!!

April - Great news on getting the Port out!!! The Doctors sounded divine lol

ChiSandy

My BS told me my LE or cording risk was only 2-6% because I had “only" 4 nodes removed; and because they weren't w/in the radiation field I thought I was home free. Nonetheless, she insisted I wear compression for long flights, high altitudes, and upper body or vigorous exercise. But a couple of weeks past the end of rads I began noticing tightness in my forearm when stretching and rotating it, and I could palpate a knot and a sore spot, so I made an appt. with an LE specialist. When I flew, I wore the sleeve & gauntlet but had some finger swelling. Also had some squeezing sensation in my bicep when I was at 7200' above sea level in Sicily (which disappeared as the bus took us back down to sea level). By the time I saw him, my symptoms were gone and my measurements normal, so he said he doubted I had LE. He also said he never recommends compression for anyone who had only 4 nodes removed, but because I described symptoms he was diagnosing me at Stage 0 LE (so Medicare would cover therapy) and prescribed a glove rather than a gauntlet. For the past 3 weeks my therapist said she didn't notice any swelling except in my breast, but would consider me as having “subclinical" LE and administered and taught me MLD. Today was the first time she noticed visible swelling. She thinks that radiation to the tumor-cavity seroma may have contributed to the LE, and perhaps the rupture of my axillary seroma in Oct. may have put me at risk. So even though I had at most a 6% statistical risk, stats are meaningless--as Dr. Susan Love said, whatever happens to you is 100%.

As to the no-needle/BP precaution, all my providers take that seriously. I have terrible veins that tend to roll, but I’ve had good luck lately with phlebotomists. And my hospital has one of those infrared “VeinFinder” lamps. I’m worried about what’ll happen if I develop full-on trigger thumb on my right hand, but my LE therapist says there are ways to ensure I don’t get infected from a cortisone shot or even tendon-release surgery. I wear a Pandora-style MedicAlert bracelet, the ID plate of which is engraved with the LE precautions, all 3 antibiotic allergies, and my MedicAlert ID#. I also have a pink plastic LE warning band I can put on if I have to have any procedures and the staff doesn’t recognize the bracelet as MedicAlert.

I ordered a tat-patterned (“Music City") sleeve & glove from LympheDivas, but they were both too long. I was able to exchange the sleeve for a shorter one (it'll be here next week); but my fingers are so short that even on their smallest glove the fingers were way too long--and remained so even as I followed the customer service tech's instructions to pull the fingers and palm down as if pulling on pantyhose. She said it wasn't safe to fold the tips back, lest it create too much compression, and that trimming the tips would make the fabric unravel. So I had to return the glove for a refund. (My therapist says the Mediven glove is a different type of fabric, with much shorter fingers and should fit me fine--but I fear it'll be a different shade of beige from the “tattoo" sleeve). Meanwhile, I have a bunch of patterned sheer nylon overlays that look like tats--but I'll have to wash them first to get the printers'-ink/petrol distillate smell out of them. (Why do all synthetic knits made in China seem to reek of VOCs)?

PontiacPeggy

Praline, I'm so sorry about chemo likely being on the horizon. I wondered since from what I read here TN gals usually have chemo. And so glad you are seeing your cardiologist this morning. As mentioned, you don't HAVE to submit to any treatment. But if you decide to not have the recommended chemo, make sure you have all the facts in hand and don't reject it out of hand. Good luck today.

April, it is a huge step getting your port out! YIPPEE. How come you get all the hunky docs? That's really not at all fair. BTW, #2 son lived in Craig, CO, about an hour plus from Steamboat Springs - that was a long time ago.

ChiSandy, dang that the matching glove didn't work. It has to be frustrating. Hope the new one matches!

MelClarity, YES! Glad the first day went well and even with the wig.

HUGS!!

MLP3

614- no sex post lx... Yet;) I was just dreaming about it😊 That's such a nice story about how you got your dog! I have my oldest home in grad school, middle is a junior in college(won't come home until May as she plays lacrosse in college) and my son is 17... I know how you just want to be with them through this but at the same time, let them live their lives. Enjoy your time with your daughter and family😊

Praline- you will have every test possible to make sure your vital organs can take it. And there are other options. Hopefully today is a better day for you. Be strong, stay strong😘

Chisandy- sorry about your le. My friend had it pretty bad after bmx and she finally convinced her ins to get her the machine/pump to use at home.

April- congrats on being port-fee!! That must feel liberating on all levels.

Mel- see....??!! Going back to work was a good thing😉

Sloane- always a big, radiant smile😀

Peggy- happy that your testing is back and all is well. You are a rockstar in this group😘

Sorry if I missed anyone!!

MLP3

question... On lx side, I'm developing numbness around my aerola and tingling on nipple that's borderline itchy. My tumor was at the 9 o'clock position and then I have the snb at the exact opposite side.

This started last night and I'm wondering if I overdid it with my walk? Is this part of healing?

PontiacPeggy

MLP3, Itchiness seems to go with healing. HOWEVER, if it concerns you, please do call your BS, there's always an outside chance that it is something that needs attention.

I haven't gotten my test results yet - Friday is my day for that. More packing boxes, tossing out junk, getting stuff ready to donate. Sorting through a whole slew of loose photos with no dates or people names on them. I'm good now about that but wasn't so much at times when I was younger. My grandmother was perfect (the gene must have been diluted when it got to me).

HUGS!

Peachy2

Melclarity, I am certain that you made the school just as delightful as you do this group. Of course they were happy to see you back!

Sloan, you and your big earrings are both beautiful!

Peggy, hoping for good test results for you!

Praline, I wish I could give you a big hug. I had a similar experience when, after being told by both surgeons with whom I consulted that I was stage 1 and there was only 10-15% chance of lymph node involvement, there was cancer in my sentinel node. I had it in my head that I'd have surgery then radiation and be done, and it felt like the rug had been pulled out from under me. My sister in law had a similar experience in '11 when her tiny stage 1 tumor turned out to be triple negative. As my medical oncologist said, triple negative is treated very effectively with chemo. Though I had eight chemo infusions two weeks apart, my sister in law had just three that were spaced three weeks apart. (She was told not to google "triple negative" and is glad she didn't.) Sending you good thoughts as you head down this path that is a detour.

Brutersmom

Praline as others have said. TN cancers are usually treated with chemo. Please go over your history with the docs and get a 2nd opinion if you are able. Insurance should pay for it. It will help make sure that you get the best possible treatment.

HappyHammer

1step- we did a daily step challenge yesterday and are doing one today. Will PM my email to you so we can be on FitBit too.

Anyone else want to join? SO far, Sloan, Sally (22), Jill (LTFly), Lisa, and Rona.

Reader- Glad to hear from you! We have surely gotten a lot of mileage out of the "porn position" error- that helped open up conversation about sex and intimacy and that has been so helpful for many of us to be able to talk about here. Have a great week!

Praline- so sorry about the chemo stuff. Sounds like your plan to talk with your cardiologist is a great place to start teasing out the best plan of action for you. Please keep us posted. Hugs!

April- how funny about the hunky docs...no wonder you didn't feel a lot of pain- sounds like it took your mind right off of the port and on to more fun thoughts! You and I seem to have a very similar dx/treatment. You are blazing the trail- not too far behind you. You ROCK!

Sloan- yep, when the toothbrush hits the public toilet- time to head on home Your photo is great- you look like this has been a god time for you and yours. SO glad the weather cooperated!

Mel- so glad you had a good first day back....bet they were SO glad to see you! Hope today with the kids goes just as well!

MLP3

Peggy- not overly concerned yet;) no bleeding or oozing or crazy swelling. Hopefully the numbness and itchy sensations are just side affects of the surgery and will go away. Just feels strange.

I did 7854 steps yesterday... Pretty good considering only 4 days post op. I'd love to get in on the fit bit group! I'm going to lay low today in case I over did it in the bouncy boob dept yesterday. I think my biggest problem was not enough support in the post op bras. When I was fitted at Dana Farber they said not tight, but loose and comfortable. Maybe I'll double up on them when I head out for a walk again.

This whole journey is really about getting over hurdles... Isn't it? You think that when you're just about to be happy with getting over one, you can't wait to get over the next. From feeling the lump, to imaging, to biopsy, to result, to surgery, to pathology, to treatments... And hurry up and wait all in between.

If the world was ruled by BC patients and survivors... What a strong and wonderful world it would be

blamoms

mlp3 that is normal. I have the same issue. I had my lumpectomy dec 30 and it still gets itchy sometimes