Lumpectomy Lounge....let's talk!
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Hi Ladies... So much excitement... you are making me so jealous with your trips planned to meet each other.. Canadian Gals, we need to go out to dinner together...
Grazy --- Yeah!!!! Sandy, I have my fingers crossed for ya..
As for me, I am looking at my second Chemo session this Friday... So far so good, but some I have talked to said the SE's get worse as you progress.. Of course, that person did not have BC, so he would be taking something different. Any truth in this??? I know it will change after the 4th session, when the medications change.
Right now, I feel like a toxic waste dump. So many, don't do's or your DH will be exposed to the Chemo drugs... sigh! Doin' the laundry and have to wash all my stuff separate from his.
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Elizabeth, I have never heard of having to wash your laundry separately before but I didn't do chemo and my DIL who had colon cancer never mentioned that either. Maybe no one just bothered to mention it. Hope you don't find the SEs any worse!
HUGS!
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Hi all, and I echo the sentiments re infusions, dates, and insomnia.
I've been doing really well up until yesterday when I realized my hair loss was finally getting to me. I thought I was prepared for it, but sitting in my car running my hand through the back and having clumps come out made me realize it's not really the hair. I think we're all vain to a certain extent, but the worst part is that it's a constant visual reminder of what we're all dealing with. I'm waiting till Tuesday to have my head buzzed as I have a family birthday party for my granddaughter who turns two tomorrow. I wanted to look a little more normal, but today gave up and just put my wig on.
I also was SUPER BAD yesterday with diet. I normally am pretty upbeat, but to lift my spirits while I was out shopping, I stopped into this wonderful bakery and bought the biggest piece of chocolate mousse cake, sat at a little table and ate the whole thing! It was delicious. Then I came home and had a delicious peanut butter and jelly sandwich for dinner! It was a great day! Today I'm back to being smart, but I thought of you Grazy with your pineapple upside down cake with every bit of chocolate! Thanks for inspiring me!
Hope everyone has a nice Sunday. Can't believe how quickly the Olympics have gone and will be closing tonight. Take care and stay cool! Dara
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Dara, I'm quite sure you're right about the hair. Glad you threw on your wig. Assume you aren't quite ready to go bald yet. (Not sure I would but maybe the temperature outside might be a determinant). I wouldn't worry about being "bad." I think the lift your mood got from those two little things count for more!
HUGS!
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Elizabeth, unfortunately, yes, chemo effects, including SEs, are cumulative. I had dose dense AC (every 2 weeks instead of three), and my fourth infusion, I think I would have been done whether my mo was ready or not. The Taxol was a night and day difference. Fatigue did become an issue, but not as bad as AC was for me. My eyebrows and eyelashes continued to fall out, but the hair on my head started growing back while still on Taxol.
I wasn't told anything about not washing laundry together, but I hate doing laundry, so my husband and I each take care of our own anyway.
Prayers and hugs to all
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Thank you for the nice comments about my avatar. You are all so sweet!
Dara, {{hair hugs}}! I have become used to my hair. It's too hot for a wig around here. I go bald around the house and put on a hat when I go out. Give it a few weeks and it probably will seem like less of a big deal. Yes, the Olympics seemed to go by fast!
Elizabeth, I was never told to wash my clothes separately. It's amazing that we get such different advice depending on where we are treated. Some people are told no raw veggies, and some are told to wash them well before eating. I wish all the oncologists would get on the same page!
Peggy, I'm delighted that your date went so well! I enjoyed seeing the photo of you and Traci and her DH!
Poodles, I'm glad you arel finally seeing the neurologist. And I'm glad he thinks your numb area will eventually get better.
Sandy and Octogirl, thanks for the travel suggestions. We are going to see a lot of beautiful country!!
Sherry, thank you for taking the time to post during your extremely busy day. It's always great to hear from you. I wish you had more time to relax.
Italychick, I'm really happy to hear that you are starting to feel normal again!
HH, well darn. I was hoping to meet you in October.
Molly, thanks for posting even though you are tired. Sorry about your relative, may he rest in peace.
LG, I hope you find the answer to your sleeping problem soon. It's terrible to be that tired all the time.
I hope everyone is having the best possible weekend.
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Alice, you will see beautiful country. While I haven't seen a lot of the West Coast, it is very pretty and rugged here. That has surprised me. Very hilly. And it will be GREEN! You seemingly HAVE to water your lawn here. Doesn't matter that it's dry, water away. Very different from SoCal where you don't dare water. I don't get it but I'm watering away for the first time in 50 years
I'm glad you're feeling good!
HUGS!
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Elizabeth, my MO said the SEs shouldn't get any worse than the first round with the exception of fatigue. I guess you can let me know as I don't have my second one until the 29th, and I'm on TC as opposed to yours. I didn't hear anything about laundry either. They only stressed to close the lid on the toilet and then flush twice. Does make us feel a little toxic doesn't it? Good luck with the second infusion.
Alice, I'm envious of you and Sloan. I just love the whole coastline up to Oregon. And it's a perfect time of year in September.
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Dear ItalyChick: I am so glad that you were able to go shopping with your daughter. That is wonderful.
Dear Jo: I hope that you feel better. Being anemic is difficult and so is constant infusions. I'm glad that you are able to nap. I love napping.
Dear Grazy: I'm glad that you are enjoying the cake that you baked. It looked beautiful and delicious. I'm glad that the Zometa infusion went well and that you did not have any side effects.
Dear Molly: It seems that you have gone back to work very quickly after your surgery and the horrible ordeal after your surgery. Of course, I missed 3 weeks of posts and have not had the time to go back and read them (sorry everyone - I do plan to catch up) so I do not know the details. I wish you the best. Of course you are tired. Sorry for the loss of your cousin's husband. You have been through so many difficult situations in addition to your bc. You are a real inspiration.
Dear Loving Grouches: I am so sorry that you are going through a depression. I hope that you will finally be able to sleep. There is nothing wrong with taking medication. It helps and is necessary. Don't berate yourself for taking prescribed meds. You are not a "pill head".
Dear PlanB: I love laughing with this group. I don't always comment because my posts tend to be very long. However, I always laugh and love it. Thanks everyone.
Dear HH: I hope that you can visit with everyone the next time.
Dear Peggy: I am so happy for you. It is hard to move and to make new friends in a different state. I am glad that you are meeting people and "dating". Good for you.
Dear Sandy: You are always such a wealth of knowledge and I love your stories. I hope that your foot feels better and that your Zometa infusion goes well. I will have my bone scan in October. Hopefully the Anastrazole has not leeched the calcium from my bones. I started with Osteopenia at my baseline bone scan in October 2014, so I am keeping my fingers crossed that I am ok.
Dear Alice: I am glad that you are finished with chemo. You are such an inspiration because you have been able to continue to walk and exercise throughout your chemo.
Dear Dara and Elizabeth: I hope that both of you feel well throughout chemo. Sorry about your hair Dara. I did not have chemo so I cannot comment personally. However, a friend of mine who had chemo was told to close the toilet lid because she has cats. Her doctor did not want her cats to drink from the toilet as they may be exposed to chemo meds from drinking the water. I guess then, that if one has cats, one should always close the lid to stop the cats from drinking from the toilet, regardless of whether one is having chemo infusions. Dogs too, I guess. (However, I don't think that my dog drinks from the toilet.)
Dear Onestep: You give great advice.
Hello to everyone else.
A friend and I went for a walk at Riverbend - Battlefield park in Jupiter, FL today. We were walking along the path and we heard a growl. We continued walking. We heard a second growl. Without missing a beat, both of us turned around at the exact same time and walked in the other direction. We never saw the animal but it sounded like a bear (although we knew that it was not a bear). We asked a volunteer who said that it might have been a bobcat or a coyote. He seemed very surprised by our encounter and basically, he had no idea what kind of animal that we heard. He was just guessing. I love to walk in that park and I generally walk by myself for approximately 1 hour at a time. It is so peaceful to walk along the paths through the trees. This park has nothing in it but trees, nature, and history. It is one of my favorite places. However, today, I am glad that I was not alone. (This is a solitary park with miles and miles of trails, and if this animal attacked, no one would have been the wiser until someone discovered the abandoned car in the parking lot.) We were very lucky. Thank God!
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Wow - I am not sure where I have been...but apparently not visiting the board enough! It was nice catching up! Some of my responses may be old now - but started writing while reading - so here goes:
Houston2016- Recovery time for lumpectomy. I just had mine on Monday, 8/15, and only did pain killers the next day; switched to tylenol by Wednesday and was back to work and cheer practice (I am a coach). I think everyone is different with recovery times - especially if you are getting any form of reconstruction. I was originally supposed to get a reduction/lift at the same time, but then found out that if my BS had to go back to get more margins...that we would wind up having to do a MX instead (as the reduction and lift would move everything around - and she wouldn't know where the original site was). So I wound up canceling that portion of my surgery (the morning of!) and only did the double lumpectomy. Luckily - my BS only had to make one long incision to get both my lumps and my sentinel node biopsy. I am still icing it though - and trying to avoid overuse or lifting w/my right arm. Do you know the size of your mass/tumor?
Welcome Abra - I am new to all of this too. And this group has been amazing for me. I haven't been in on since before my surgery (on 8/15) - so trying to catch up. Are you doing chemo because of your 2/6 nodes? I have an interview tomorrow for a new job - and starting to worry I may also have to do chemo (but don't have my Sentinel results back yet to know for sure). It would be a great job too, but not sure I can start a new job and deal with cancer treatment at the same time.
Dara - sorry to hear about the hair, but I am sure the wig looks great! How are you feeling otherwise? Nausea or anything?
Sara179 - welcome. Curious what you wound up doing? Just rads? While I don't have my results back yet - I am trying to prepare myself that I will be doing chemo first, but hoping for just rads.
All newcomers - I got a slew of books out from the library shortly after I was done with the shock and tears. I got the Breast Book that was recommended and it was helpful...but overwhelming too, as it is a big book. I also found this book super helpful (& easier to get through): The new generation breast cancer book : how to navigate your diagnosis and treatment options--and remain optimistic--in an age of information overload by Elisa Port. I also will share that this board was more helpful than any book or consultations (and I had 3 of them). The folks on this board are so intelligent and caring (and fast with responses). Mentally, I feel I am in a much better place than I was a month ago when diagnosed...and I never thought I would get to this place either. I feel much more confident in battling this - and doing what needs to get done. Although - I will be taking my xanax tonight...as the waiting/anxiety (once again) is driving me nuts. Cancer is definitely not for the impatient due to all the waiting we have to do. ugh.
My lumpectomy went well, but I wasn't given any exercises or cord warnings - so while catching up on all these posts, I started streching and doing exercises for fear I will get this cord thing!? If my BS didn't do an additional incision for my sentinel, will that help my chance? Or it doesn't matter about the incision and it is based on the lymph nodes being gone?
The worst thing about the lx surgery was definitely the wire localization in my 2 spots. OMG - how uncomfortable was THAT!? yikes! I wish they could have knocked me out for that - but there is no way they could since they have to keep your tatas squished in the darn mammo things while inserting the needles.
When does the oncotype thing occur? Would they have tested during my lx? I know they did the sentinel, but not sure anyone said anything about the oncotype test?
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I had a radioactive seed implant rather than a wire location (didn’t even feel much of the lidocaine shot, and after the nuke-med team passed the Geiger counter over it and it crackled, the radiologist said “yup, she’s hot.” I immediately replied “thank you,” and they all cracked up. In retrospect I should have replied “that’s what he said.” The radioactive tracer injection for the SNB was much more painful--no blue dye though.
I think having only one incision for both lx & SNB means only one seroma, which probably won’t be an uncomfortable one. I don’t think it has any impact on your chances for cording or LE--that’s a crapshoot. Usually that depends on how many nodes are removed (regardless of whether negative or positive) and even that isn’t always predictive. I had only four (2 sentinels and 2 hangers-on) removed and got LE and cording; there are women here who had partial ALNDs with over a dozen nodes removed and didn’t develop either condition.
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Dear KdTheatre: Wow. I guess that I was extremely lucky that I had clear margins. I had my double lx plus reduction/lift and SLNB all at one time. No one mentioned that I would have to have a mastectomy if I did not have clean margins. In fact, no one mentioned the possibility of not having clear margins prior to my surgery. I know about this now but I did not know about it then. I was really fortunate. I was dx with lobular carcinoma so there is a tendency for ILC to form "tentacles". I guess that I was told about the possibility but I don't remember. I was overwhelmed at the time. I'm glad because I did not worry. What I do know is that every time that I have a scan, the radiologist mentions that my my breast tissue is distorted from the reduction/lift and that my "architecture" is not in the correct spot.
Thanks for the information regarding the book suggestion. That is helpful. I hope that you will not have to have chemo. The oncotype test is given to early stage bc patients to see whether chemotherapy is necessary. If a person is Grade 3, has an aggressive bc, is tripple negative, is her 2+, PR-, has lymph node invasion, or has an advanced stage bc then the Oncotype test will generally not be ordered as chemo would generally be warranted. The Oncotype test is expensive. Your MO or your BS should speak with you regarding whether you want to order/have the Oncotype test performed. You have to request that your doctor order it. Generally, your doctor will bring up the Oncotype test to you, explain it to you, and ask you whether you want to have the test. It takes time to get the results since it is a genetic test. Lots of waiting.
Good luck. I am glad that you feel well.Dear Houston, Abra, and Sara: I missed 18 pages of posts. Sorry that I did not welcome you but I am welcoming you now and wishing you well. I am sending you hugs and prayers.
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Dear Sandy: Yes, your are hot! (You are beautiful in the pictures that I have seen of you.) Thanks for making me laugh.
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614, Sandy IS hot - I've met her in person and a personality to match!
HUGS!
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Did you all watch the Olympics? A couple days ago there was an interview with one of the American runners who is a breast cancer survivor. It was a really honest and encouraging interview. She's four years out from her diagnosis. She ran in the 2012 Olympics knowing she had cancer. She waited until after to have treatment.
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I missed that. I haven't watched much of the Olympics. Quite the inspirational story.
HUGS!
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Peggy, 614, I’m blushing!
One little correction to the OncotypeDX info: they will now order it for patients with up to three positive nodes (a recent development). But the tumor has to have been either Stage IA, IB or IIA, under 3 cm (most MOs say 2), and be ER+/PR+ and HER2-. Some Grade 3 tumors qualify, though they’re not likely to score 17 or below. And the patient has to be willing to take anti-hormonals. A tumor that is only weakly PR+ or is PR- is also unlikely to score low or low-intermediate, but sometimes it does. And if the tumor is stage IA, ER+/PR+/HER2-. Grade 1 or 2 and smaller than 1 cm the test is rarely ordered unless the patient is younger or seriously considering chemo, because chemo is very rarely recommended in such instances. OncotypeDX’s value, acc. to my BS’ NP, is in the case of “gray areas” such as size between 1-2 cm, Grade 2 or 3 and 1-3 nodes involved (or lymphovascular invasion even if node-negative). I asked about it before surgery and she replied I shouldn’t get ahead of myself--besides, there usually isn’t enough tissue left over from a core needle biopsy to send off as a representative portion of the tumor. Mine was IA with no LVI, Grade 2 with a mitotic rate of only 1, highly ER+/very highly PR+/HER2-, but it was 1.3 cm--so I was the poster child for “gray area.” Fortunately, my score came back 16, still considered “low-risk,” especially at age 64.
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Hi to everyone. Thinking of you all and sending hugs! Can't believe another week is about to start and I have so much to still do before I can get to bed. Rads fatigue is setting in. My mom has been extra confused and needy on top of everything. Almost daily bathroom accidents that make me feel ill. Not her fault I know but just too much to deal with at once. Sometimes I just want to cry and hide. Trying to keep my patience but having a hard time. I'll just sit down and she needs something. If I take a nap she's trying to open my door within 10 mins. Been trying to get her some more help for six months but everything moves in snail speed when you are low income and dependent on county and state programs. Have a couple of things in works but one can take up to six months. The other requires me to interview people to care for her. Just spread too thin to do it all.
Hugs and happy week to all.
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Meant to ask you ladies who have gone thru rads already if you had pain in your nipple? Skin is doing ok so far but nipple is a little swollen, sore and very sensitive. Just touching material hurts.
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I didn’t have an overly sensitive nipple during the course of treatment, but I’ll feel a little “zap” in the areola every now & then. Seeing as how my SNB tracer injections were given straight into the areola (and hurt like a futhermucker), it’s possible there was some nerve damage that is only now repairing itself, with pathways being reestablished.
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Ouch! Injections in arreola sound painful! My LX incision is just outside of my arreola and I feel the zapping pain on occasion as well. This pain Is very similar to early breastfeeding pain with over stimulation and just rubbing against it hurts like heck!
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Have you tried what helped me during breastfeeding--viscous xylocaine and Aquaphor? Or soft cloth nipple shields/nursing pads? (Wash them till they’re really, really soft).
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Beebazboob, I had the same issue with my nipple during rads. It was swollen & very sensitive. But it never became unbearable. Say something to your techs to see what they recommend. Sorry you're having to deal with your Mom & govt red tape on top of all this. Hugs!
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Beebazboob, I feel so sorry for you. I totally understand how exhausted you are from caring for your mother on top of everything that comes with BC. It is never ending and sleep seems to be non-existent. When I needed to get DH into a nursing (which I couldn't afford), I went to an elder law attorney, paid $5,000 and he whipped our finances and powers of attorney into shape and, painfully, got DH on Medicaid. I could not have done it myself. You might investigate an elder law attorney. If they could speed the process along, it might be worth it. Of course you don't have time to interview caregivers and, like most of us, we don't know what to look for. We can't vet them.
I had no issues with my nipple during rads. And my dye injection was not painful. I don't believe it was in my nipple. the surgeon did it and used Lidocaine first. I gather I was very lucky.
Good luck coping with all the issues you have going on. Wish I could help you.
HUGS!
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Beeb- SO sorry you are having to do all of this- but especially during rads- which in my opinion- was very difficult. Is there any kind of adult day care or respite care in your area? Maybe once a week or so that could give you a bit of a break while awaiting other things to come through? And, yes, my nipple gave me a lot of trouble during and after rads and is still very sensitive. Sending extra hugs and prayers your way!
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Dara- SO glad you took a "day off" from diet and just had what you wanted. Doing that every once in awhile can be a fun way to let yourself enjoy what you like while fighting the cancer. All things in moderation. Hair is a different thing- you are right, not having it is a constant reminder of treatment. I'm with Moondust, though. I bought a wig- wore it once- too hot and very itchy. Usually went bald around the house and always wore a hat when out. Never could get scarves to work and look right but I like the look on others. Once my hair started growing in and covered the skin- I went with it and never looked back. Will be in your pocket for your "buzz". Though no hair is hard- it felt better not to have it falling out every time I touched it. Hoping you feel that way, too.
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Beezaboob-I did have nipple pain that increased over the course of therapy. I have protruding nipples that were protected by tape during each treatment, but clearly the radiation took a toll. My nipple turned black, was highly sensitive to any touch or pressure. Once it peeled it quickly returned to normal. Took about 8-10 days post treatment
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Hi All!
I've opened an Etsy store that benefits Breastcancer.org that I wanted to let you know about.
(Scroll down to see the About section)
$10 from the sale of earrings and $10 of sales from other items will be donated. I just sent the first donation of $236.00 from last weeks sales in today. Come check out my stuff and see if there's anything you like to add a little bling to your day and help out BCO at the same time.
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Dear Beezaboob: I am so sorry that you have to care for your mom at the same time that you are going through breast cancer treatment. That is very difficult. It is so hard when finances are tight. I can totally relate. My nipples were not sore during my rads so I cannot give you any advice. I wish you well and I am sending you hugs. Please speak with your RO to see whether your doctor can give you advice. Good luck.
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