Lumpectomy Lounge....let's talk!

Nash54

Night lumpies...sleep well. 😝

Sweetmamaj

Peggy, I am so sorry for your loss. I'm glad that you were with Chuck at the end; you did everything to help him rest in peace. My thoughts are always with you, even when I'm not on the board. Many, many hugs!

molliefish

I am surprised that cording isn't discussed more here, but then again I only read a few threads. Ax. web syndrome/cording was one of the first side effects I had. I searched online for treatment for it and discovered there is a procedure they do at physio called a nerve glide that helps resolve cording along with stretching and mild strength exercises. I found that the cording started within about 5 -7 days of my SNB and lumpectomy. By day 14 I was at physio being treated because I couldn't resolve it, I couldn't get my arm over my head, and I was getting a big seroma in my armpit. I found out that I was being too aggressive with my massaging and stretching. As soon as I backed off and let the PT work on it I got relief very quickly. I took 7 sessions of physio, 2 times a week for a month and I was pretty much back to normal. If you are able, I recommend trying physio. If not be sure when you are doing the exercises they show you in the information after lumpectomy, go easy and don't over do it.

Luck to all who suffer from it.

Sweetmamaj

Outrunning, yes! the AWS is what I described after talking to my new MO's nurse last week. She did not think I had it; I had asked for someone--maybe you? or Sloan? Anyhow, she said that it was not that common, but good to be aware of-as a possible problem.

All, I've been feeling pretty wiped out -I think from the radiation tx. Didn't expect fatigue this early on, but somethings been kicking my butt.

Anyhow, welcome to all the newbies!

molliefish

Peggy you don't know me at all, but I've been following your story since shortly after joining the boards. I have read every day your journey with your husband and family. As with all the others here, I offer my condolences with the passing of your husband, and wish you continued strength as you finalize your arrangements and move forward with your life. The reason I speak up now is when you discussed your plans for the distribution of the ashes. My Dad died three years ago this past September 4th. Neither of my parents wanted to be buried so he was cremated. When he was still able to get out and ride his scooter/tractor around the farm he would always stop on the bridge and spend some time listening to the creek bubbling and taking to him as it travelled over the rocks and under the bridge. It seemed only fitting then that My Mom decided that she would scatter his ashes in the creek. Sure enough she told the funeral home they also told her that they hadn't heard what she said, and that the county 'frowned' on such things.

Now if you ask my Mom where my Dad is she'll tell you 'He's down at the creek'.

And every now and then I stop by and listen to the creek talk to me.

ChicagoReader

Peggy, I'm so sorry to hear about your loss. Thank for sharing the photo and memories with us. I hope the support from this community has provided some comfort in this tough time.

Outrunning

molliefish and SMJ thanks! I see my trainer on Thursday morning. He has a full in degree in Kinesiology and does muscle activation techniques plus a bunch of other stuff. I sent him the article. Plus I see RO later in the day Thursday. And MO next Tuesday. Hopefully one of them will be able to help and/or direct me to help.

Since I'm seeing other docs do you think I should call BS? When I saw her last Thursday I hurt there but thought the pain in that area was from rubbing etc. It wasn't until other pain had subsided a bit and I can move more, that I could clearly identify the problem.

PoppyK

Outrunning, I would call the BS right away. The sooner you receive treatment for complications, the better. Don't hesitate to call your docs... as someone said here on the boards "they work for you"! :-)

PontiacPeggy

MollieFish, Good for your Mom! Do they think that sterilized ashes are going to contaminate the waters? Do dead fish? It's idiotic. Thank you for the lovely story. I will figure out a way to accomplish what I want to do and what I think Chuck would like. It WILL happen

HUGS!

Molly50

I still have my dad's ashes here waiting for the opportunity to spread them somewhere meaningful. Having my son and his health issues has left me with no time and my siblings aren't really interested.

MJS1266

Outrunning, This is common. I had cording too. Get a referral to a Physical Therapist from your BS. The PT will massage it away. Good Luck, MJ

mustlovepoodles

Molliefish & Outrunning--I have been seeing a physical therapist who specializes in lymphedema therapy. She has been very helpful to me. She taught me how to do some massage of the axilla and upper breast, and she has given me some exercises to do to strengthen my biceps and increase range of motion in my shoulder. Prior to seeing her, I had limited range of motion, but just in the last 2 weeks I've seen vast improvement. I highly recommend seeing a lymphedema specialist.

Sweetmamaj

Peggy, I also think it's idiotic. Ashes to ashes, dust to dust. I'm glad you are finding some peace and joy again in your life ((HUGS))! Do you still feel all the love sent your way? Maybe via the cosmic/mystic airwaves.

Molly, I'm sure your dad would be proud of how you've prioritized the many, many difficult tasks and choices in your life. Sometimes I think we worry about not letting go, or needing to spread the ashes in a timely (whatever that means) manner, or-this is especially true with me: trying to find the "perfect" location or idea. Maybe, for the time being, your dad's ashes are right where they need to be: close by you, concealed, but not forgotten. FWIW, I have some of my dad's ashes, and although it's "only" been 5 weeks since he passed, I know that someday I'll figure it out. Many gentle Hugs to you!

Outrunning, i agree with Poppy that our providers work for us, and we should not hesitate to call them with our concerns. It also sounds like your trainer is a great person to see; his degree in kinesiology will no doubt add to a good treatment plan for manual therapy and stretching. Likewise, your RO and MO could weight in on your SE and tell you if it's AWS or something else.

From my brief discussion with my MO's RN, she has not seen AWS treated surgically, although she did say something about dermatologists using lasers to help with some types of cording. I asked her about wearing a compression sleeve while exercising-- she chuckled and indicted that I don't need to worry about lymphedema, but it can't hurt if it makes me feel better (mentally). Of course, now that I've started radiation, wearing a sleeve does not sound at all appealing. ha!

Molly50

sweetmamaj, thank you for your kind words. I really appreciate your understanding. My dad was always proud of the way I took care of my DS. I miss him so much. I will post more later. I go for my first of two double fills on my TE this morning and then pick up DGS from preschool.

Outrunning

Thanks again ladies. Called the BS. And talked with their nurse practitioner. I'm going to go by to she her tomorrow after my appointment with the RO.

On the ashes. (Typed this up last night on my phone and then lost it. Trying again.)

My Mom is all over. Thankfully she was a generously size woman and there was a lot of her to go around. Some of her ashes are in a urn, buried in the family cemetery between her parents. I also have a tiny keep sake urn in my bedroom.

Then we handed out little bits of her ashes to friends and family in film canisters. (She was an avid photographer.) She's in Lake Ontario, Cape May Zoo near the red pandas and a friend's private pond. My aunt never told me where she actually spread them. (Dad's sister but Mom and she were friends before Mom ever met Dad. And when my parents divorced Aunt stayed closer to my mom than she did her own brother.) She had said she was probably going to leave them in the family cemetery for that side of the family. Because Mom was close to many of them.

As for me, I left mom in the National Zoo panda enclosure. (I'm really sure they don't want to know that.) She was an Asia Trail volunteer. We released them from the walkway above where her memorial bench is. And also the glen at Glen Echo Park were we all swing dance, and where I met my husband, and where he proposed.

Last but not least Mom is in China. She and a friend were organizing a group trip to China when she died. In fact the surgery was because she was going to China. She had a hernia from an ostomy a few years before. Didn't want it to strangulate while in China. She died of a post op infection. Her friends took a photo of "her" at the Great Wall. Then left her ashes in Bei Fen Xia Panda Base, in Sichuan.

She died 8 years ago this coming Friday.

PontiacPeggy

Outrunning, what a good idea of various places to scatter ashes. I may do that too. Chuck loved the Spokane Indians baseball team and southern California so might work out something there. I like that she "went" to China. Thank you for sharing.

HUGS!

Sweetmamaj

Ringelle, this is a delayed comment re your friend's doc recommending a BS to do her stereotactic bx over a radiologist. Maybe the location(s) were in an area that required more finesse in surgical technique? Maybe it was a personality difference between her doc and the local radiologist? When I had my stereotactic bx, I initially chuckled because the diagnostic radiologist looked about 15 years old!. Of course, after she said, "Oops, I'm sorry, I have to make another incision...new scalpel please" I was less enamored with the youngster.

When she told me that the clip "had migrated from the tumor site" right after she placed it, it was time for me to go into my happy place and just focus on breathing. During the wire placement on the morning of my LX, the interventional radiologists saw the 2 incisions, hematomas, and migrated clip placement and casually asked me who did the bx. When I told them, they said nothing but looked at each other, with that look. I'm sure you know the one. So maybe with your friend, it had to do with location, finesse, reputation, or something else. But I would follow up and ask my doc if I wanted to know.

Anyway, I hope you are recovering well. Don't worry about the tears! We all need to shed emotions, even if they seem to come out of the blue--I think they're there for a reason! Hugs to you!!!

Sweetmamaj

Outrunning, what a lovely story! Thanks for sharing it, and I will be thinking about you on 25th.

Molly, good luck with your TE fills. I didn't realize that you have a DGS! Please take it slow and easy and remember to honor your own needs as well.

Molly50

I survived not a double but a triple fill! I get to wear a bra again! Who was it that found a soft bra at target?

bjclaywell

Hi all. Tomorrow is a big day for me. I'm meeting with the MO to find out my Oncotype DX score, and get the results of my bone scan back (not bone density, but the radiation one). I'm concerned because I just don't have a good feeling about the whole thing. Plus, they were only supposed to do a full body, both hips, both ribs and a skull scan, but after it was all done they asked me to do another rib scan from the front, not the sides. So now I'm worried.

If I don't have to do chemo, I meet with the radiologist on Monday to plan out my radiation schedule. If I do have to do chemo, radiation will, of course, be put off until after that it done.

On a positive note, the MO's office did call today to confirm and ask me where my pharmacy was and what their number was. Maybe that means I get to skip chemo and go straight to Tamoxifen? Who knows - I'm guessing - pulling strings out of a hat here...

Patience. I just need patience. Mom is going with to the MO's office.

Sorry for the ramble...

PontiacPeggy

Bobbi, you're entitled to ramble. You have a lot riding on tomorrow's MO visit. I can see why you're concerned about the extra scan. I intend to be bouncing around in your pocket tomorrow (please don't wear those tight jeans - so hard for me to move in them). Glad Mom is going with you. Fingers, toes, eyes, legs, arms crossed for you. And loads of HUGS!!!

Molly50

Bobbi, I am praying for good results tomorrow!!

MJS1266

Bobbi, I totally get it. The Bone Scan was the test that had me the most anxious too. The technician and radiologist were so blank faced. I thought for sure there was a problem. The only things they found were some degenerative damage probably from an injury. Fingers crossed for the meeting with the MO. Good Luck, MJ

Sweetmamaj

BJ, I'll be thinking about you tomorrow and sending positive thoughts! It is worrisome when they want to repeat a scan or test, or do something extra. But at least they are looking out for you and someone there has your back! The good news about Tamoxifen is that it should not cause bone loss, and I've heard that it could potentially help with some types of osteopenia/ osteoporosis.

Hoping you have good news from your MO and can skip chemo.

Sweetmamaj

Molly, Yay! on the triple fills today! Hope you are taking it easy and found the right bras.

Ringelle

I'm so happy to report that my friend got her results back today and she won't be joining us here! Here results were benign. I feel so relieved - for her - and me! I'm surprised how much her situation affected me personally. I'm still not exactly sure what role the surgeon had in this whole thing. IMO - I would have stuck with the radiologist! She said they didn't go far enough the first time and had to go in a second time and deeper to get the right spot! She has been swollen and sore for two days. I know everyone's experience is different but it sounds like she's another case of someone who went through unnecessary pains for a biopsy!

I finally contacted my BS about my seroma coming back. I'm so thankful he's reassuring that my little seroma isn't an insignificant and silly concern. He's going to work me in tomorrow for an ultrasound and another aspiration! Even if it comes back - atleast I'll have relief for a few days!

Molly50

Ringelle, I am relieved for your friend. I hope you get permanent relief from your seroma.

octogirl

bobbi: will be thinking of you tomorrow...will hope for great results and please keep us posted!!

Molly: a triple, woohoo!

and yay for your friend, Ringelle, and hoping that your seroma relief lasts!

Hugs to all!!!

Octogirl

Sweetmamaj

Ringelle, so perhaps your last crying episodes where not "out of the blue," but because you were so affected by your friend's journey? Glad she won't be joining us as a lumpie! And yay! that your BS is reassuring and helpful!

plumster1

Ringelle- congratulations to your friend and sorry that Seroma is bugging you. Sounds lie you have a good BS that is trying to take care of you.

bJ- I will be thinking good thoughts for you tomorrow. Hopefully an all clear and low score!