Lumpectomy Lounge....let's talk!

Jo6202

Peggy,

I have been on the road for five days so just now read about your husband. So glad you were able to be with him. Hope memories of happier times like the Tiger's games bring you comfort. As far as the ashes, I saw a locket that can be worn with a tiny bit of ashes so he can go where ever you go. Now how can we sneak a few ashes to Comerica Park? ⚾️ 😇

J

zinny

Hi Y'all. New here. Had my lumpectomies Sept 2, waiting on my oncotype to decide treatment. MO and team are suggesting no chemo, just induced menopause, estrogen blockade and of course radiation. Given my bilateral DCIS, once we've treated the nasty bits, I'll be having a bilateral mastectomy at the other side of treatment.

So, anyone else with lobular with pos nodes in the same position?

Second, friend of my mom's has sent me the 25 item list of what complementary things to be doing...anyone else have experience with Vit D, C, metformin, etc et?

Thanks for the support.

Speaking of support, why did I hear nothing about compression before my lumpectomies?!!

Moderators

Welcome zinny! Although we're sorry for the reason that has brought you here, we're glad you've found us, and hope you find the answers you're looking for.

Best wishes,

The Mods

PontiacPeggy

Welcome, Zinny, you've found the best place in the world! This group is warm, caring, comforting, a safe place to rage against the disease that brought us here in the first place, to cry when it becomes too much, and whine and bitch. We've all done everyone of those things. WE GET IT!! You certainly have had a double whammy. Hope your Oncotype comes back with no chemo. But if it doesn't, I'm sure you'll manage. My friends say it's no fun, but doable.

I found radiation to be more an inconvenience than anything. And my RO and techs were so supportive. DH was in the hospital, very very ill while I was getting my rads and they all asked about him every single day. It must be daunting to face a bmx but I can understand why you are planning it.

What compression are you talking about? Nothing like that was mentioned to me. Only wear a supportive, non-underwire bra after lx.

Regarding that list of 25 things to do, I'd be real careful about doing any of them without input from my oncs. I do take Vit D3, 3000 units daily. Somethings that seem harmless may not play well with therapies we are getting. Some of those may be Old Wives Tales, too. Read the various articles on this site to get more information. But primarily talk to your docs.

HUGS!!!

PontiacPeggy

Jo6202, Nice idea about taking DH's ashes to Comerica Park but doubt it would work. We mostly watched the games on TV - far too difficult for him to get to and sit through a game the last few years. Parkinson's sucks. Thank you for the kind thoughts. I do have a lifetime (50 years) of memories to make me smile.

HUGS!

keepwalking

Ringelle - So happy to hear good news for your friend! It seems reasonable that you were reliving your experience all over again through hers. Glad that this stress has been relieved. I hope all goes well with the aspiration and that the seroma resolves after this. Will be thinking of you.

Molly - Wow, a triple fill! Hope you found the right bra, and nice that you can get some semblance of normalcy back in your life!

Bobbi Jo - Positive thoughts and prayers for you for a good Oncotype score!

SweetMama - What a nightmare of a biopsy! I'm sure you don't want to be seeing any more youthful practitioner at this point! My last biopsy was by a "robust" matronly Russian woman. I had no doubt that she was skilled in what she did, but she put no premium on being gentle in any aspect of the ultrasound or biopsy. (She started out by kneading both breasts like a 200 lb. baker in a hurry to get the dough in the oven!) When the first core biopsy felt as though I had not been numbed at all, she said "we don't give enough anesthetic to numb the inside, just the skin". Gee thanks, could you have given me a bullet to bite on?

Welcome Zinny - Hoping that you get a good Oncotype score and that all goes according to plan for your treatment. Sorry to hear that you are headed for more surgery for BMx.

Some good news - our new grandson was born on Wednesday (Yom Kippur) ! Baby and mom are doing fine.

Prayers and HUGS to all.

octogirl

Mazel Tov, Rina! Here's to many, many years enjoying being Grandma to your Grandson! Hugs!

keepwalking

Thanks Octogirl! Congratulations on decreasing visits to the BS and good healing happening! A much deserved bit of good news.

Molly50

Rina Congratulations on the birth of your grandson! My little guy is the light of my life. Being a grandmother is the best job ever!

Italychick

I'm with you on the grandkids thing. I have three, and they are the joys of my life! Darling grandson (grand baby no. 1) told his mommy the other day he wanted to be a bird for Halloween so he could fly to grandmas house whenever he wants. Love that boy

pennsygal

Congratulations Rina! Wonderful timing for you with all you're going through.

Bobbi - thinking of you today and hoping for the best.

Theresa - what a sweet story!

Molly50

Theresa that's the sweetest story!

keepwalking

Thank you Molly and pennsygal! This is actually grandchild #2 for us. The first, also a boy, is 8 months old. They live in Calif, so I don't get to see him much other than in photos, videos, and video calls. They were with us for 2 weeks in July, before all this hit, and it was great!!!! I can certainly understand the sentiments about grandkids. I didn't want to ever let him go! Grandson #2 lives a few blocks from us, so I can't wait for the experience!

Theresa, what a statement to cherish from your #1! Melts the heart.

Outrunning

So much going on this morning!

Rina - Wonderful news! You have to grandparent like my step-mother does. One of her daughters is close by in Vermont. And my dad and she watched the kids regularly. Her other daughter is an ocean away in Scotland. And then we're here in DC but don't see them much more often than the ones from Scotland do. And we don't stay as long when we visit.

Met with the RO this morning. Nothing unexpected. Just annoyed I can't get in the schedule until I see them for set up next Friday. I want to know what time of day is going to be messed up for all of October. Only set up I could get was mid-day. Which really is really hard with me being on deadline. The RO gave me the referral to PT. She's talk to the NP in the morning. RO said the NP was new and hence being cautious about making sure they had time for me. So at least I didn't have to go to two offices today. Waiting on call back to schedule PT eval.

bjclaywell

Hi all! Just back from the MO - Oncotype DX score is 17!!! No chemo - I meet with the radiologist again on Monday to set my radiation schedule. Only bad news was they did find something in the bone scan at the base of my skull (here I was worried about the extra chest scan) - MO said it was unlikely that it was cancer, however. On a positive note, I will now get the CT scan, with and without contrast, that my insurance denied. My MO is hilarious - she decided that because I need the CT scan done on my head, she's doing my entire upper body anyway, because it's what she wanted in the first place (she isn't happy with my insurance company LOL). Her office is doing it on a STAT basis, so I will get in right away and get it over with. As I drove away from her office, I remembered that about 4 or 5 years ago, I was hit in the base of the skull with a baseball at the baseball park and had a nasty contusion/minor concussion - I wonder if there is scar tissue there from that. I'm betting that's what they saw...

Anyway - I'm so relieved - thank you all for the well wishes and hopeful thoughts - I felt all of them while I waited anxiously!

Rina - congratulations!!!

Molly - holy cow girl!! Way to go!!!

Ringelle - I'm glad for the good news for your friend. My poor mom is reliving all of her cancer issues with me, and sometimes I think she's more upset and stressed than I am...glad you can be such a good friend and be there for her regardless!!

SweetMama - ugh on the biopsy. When they did my first core needle biopsy, I wasn't completely numb and the doctor said that now I knew what it was like to be shot with a small caliber bullet. I was like - uh, okay? Not what I wanted to experience, but thanks so much for letting me know I can manage that pain...

Zinny - welcome - sorry you have to be here, but you couldn't be with a better group of women!!! Sending good thoughts for a good Oncotype score!!!

Outrunning - ugh on the scheduling. Hope you are able to schedule everything in the best way for you.

Everyone else - positive thoughts and prayers for whatever place you are in this crazy life we all are living.

octogirl

bj: Yay for the low octotype score and no chemo!!! very happy you won't be joining me for that, and I bet you are right about the scar tissue but in any case we are in your pocket till you know!

Octogirl

Nash54

So happy for you BJ on your Onco score!   

PontiacPeggy

BJ! FANTASTIC news!!!!!!!! I'm so happy for you. I'll bet your right at what they saw on the scan. Rads will be a piece of cake but a royal pain.

HUGS!!!!

Outrunning

Yay BJ Happy for you!

I see MO on Tuesday and until the RO mentioned it today, no one has seemed concerned with the Oncology type for me. Now I'm wondering if BS should have been.

Also, RO was like "No one told you to stop taking your birth control?" Luckily next week will be an off week. So if MO tell me no more, which I assume she will, It will be an easy place to stop. Honestly only took it so I didn't have periods, not enough action are here to actually need the contraceptive aspects.

Keys-Plez

Zinny....I'm also ILC. I'm just discovering it does not behave like IDC and is not treated like IDC/DCIS. I've only begun my research but this is what I've found so far. ILC responds better to AIs than Tamoxifil. Therefore it is common to force menopause so AIs can be used. Big side effect of AIs is calcium loss. My MO has put me on 1200 units calcium and 5000 vit D daily. There are some threads here on ILC, but not much. We represent only 10% of BC, whereas DCIS/IDC represents 80%. Fortunately my nodes were clear. My MO didn't do an oncotype. He said I didn't need it. Don't exactly know why. Maybe it's the ILC, but I don't really know. I'm meeting with him next week and have a lot more questions. After what I've read, if he says he treats ILC the same as IDC. I'm gonna run in the other direction.

On the other hand, I have a friend than just told me she had LCIS 10 years ago. Her treatment was lx, rads and hormonal. She took herself off AIs last year. She's doing fine.

Sweetmamaj

Welcome Zinny! Sorry your have to be here, but glad your found us! I would run all Comp & Alt Txs by your docs. It seems that some are generally helpful, but--there are a lot of buts. For example, some vitamins and natural products like Flax Seed can mimic hormones such as estrogen. Generally, they are classified as Phytoestrogens and are typically considered helpful. But I see that you are like me, in that we are both estrogen-receptor positive. I keep to a vegetarian diet (soy is a big source of phytoestrogen) although I eat seafood on occasion, and while all my docs support my fairly balanced diet, my Mo advised against additional supplements that could possibly fuel those hormone receptors. Here is a link from Tulane Univ; I think if you play around with it, you can find a basic animation on the hormone pathways. (Yes, I'm a geek! I love science). http://e.hormone.tulane.edu/learning/phytoestrogen...

Also, it seems that the different treatments we undergo (rad, chemo, endocrines) may effect the other products differently. So while something may be great while undergoing radiation, it may not be helpful with one of the hormone therapies. Hope this makes sense.

Re the compression..are you referring to wearing a compression sleeve? I know that my BS did not think I would have problems with lymphodema, so she said not to buy one unless I needed it after Sx.

Rina, Congratulations on DGS#2! How wonderful! And I loved your description of the matronly woman kneading your breasts like a rushed baker! laughed out loud! I could just picture Cloris Leachman in that role in a Mel Brooks movie.

BJ, Yay on the no chemo!!! And ouch on the baseball story. Also, another funny, (but bizarre) bx story! A small caliber bullet. really? What are they thinking when they tell patients these things. Like, we are Duck Dynasty wannabes, or maybe it's a cool story to show our courage.

On a different note, I had a lot of problems with kidney stones when I was in college. Once I was hospitalized for 8 days, and during that time I was told by multiple docs that the pain I was experiencing was "worse than childbirth." It almost seemed as if they were taught to say that during their urology rotation in med school. Well, many years later, and after 31 hours of labor and right before delivery of my first child, I burst into tears and screamed: "THEY LIED!!!!" (of course, no one knew what I was talking about).

Outrunning, I found the "waiting room" to be one of the hardest periods. But I'm glad that I didn't start my rads too soon because I can see how it can really do a number on the healing incisions. Hope things work out.

Hugs and sending thoughts of hope and courage to us all.

Horsegirl

Outrunning - wonderful news!

Zinny - I take 4000 of Vit D.
Not familiar with you list of 25, but I have read the book "50 Things..."

Ringelle - so happy that your friend doesn't need to meet us
Prayers for that seroma. Hope tomorrow goes well.

bjclaywell

Outrunning - my BS isn't the one who ordered the Oncotype test - it was my MO. I had asked my BS about it, but he said he was leaving that up to the MO. When I saw her the first time, she said she wanted to do it.

SweetMama - Duck Dynasty wannabes. LMAO - I'm seriously dying over here...that was hilarious. I'm totally going to run with that in all my future stories...Bahahahahaha

And again, thank you everyone! I really couldn't have gotten through my wait this morning without reading and re-reading all the posts!!

(PS - I splurged on a new haircut and am coloring my hair as we speak. If there are spelling errors, I apologize - I don't have my glasses on.)

Molly50

Great news, bjclaywell!

keepwalking

BJ - yay!!! doing the happy dance for you! No chemo! Praying that your CT scans find nothing. I hope you don't have to wait long for them or for the results.

SweetMama - Laughed out loud at the "THEY LIED" line. I thought they just told that story to men with kidney stones so that they could feel they were as tough as their wives :-) And what a picture of Cloris Leachman in the role of my biopsy radiologist in a Mel Brooks movie :-) Does that date us?

LivingThis

Congrats on the healing octogril! I had a biopsy a few weeks ago and have a lumpectomy scheduled for next week. I am feeling wierd sensations in my breast and armpit on the side of the biopsy and last night I was sweaty and felt hot flashes (and I am 6 years postmenopausal so this is not common). No flahses this morning. Are these just healing sensations or could something else be going on?

PontiacPeggy

090815, It's possible, I suppose, that some nerves were disturbed during your biopsy. Was it done on both your breast and armpit? I can't see how your hot flashes would be related to your biopsy. Were you taking HRT when your BC was diagnosed? I would assume that you are not taking (or going to take) Arimidex or Tamoxifen since you are triple negative. Answering your question, if you have more hot flashes/night sweats, I would consult your BS/MO or PCP. Also ask them about your strange sensations.

HUGS!!

octogirl

090815, I had some pain in my breast before surgery which I think might have been the tumor rubbing up against nerve endings...haven't had hot flashes in a long time though. Might be worth mentioning to your doc.

sweet, I laughed outloud at the 'they LIED' comment. Of course, I am betting the 'they' involved here were mostly men? Maybe they say that so they can pretend that there is something as painful as childbirth that a man will experience? Just sayin' :-)

Hope all have a great day!

Octogirl

april25

Peggy, dear, you are so invaluable here, on one of the friendliest and most helpful threads around! So many hugs and love and wishes being sent to you! It was so lovely seeing that photo of you and your big strapping sons and your DH when he was still able to be up and about. It's so good to be reminded of better times.

The stories and comments on the spreading of ashes have been marvelous and touching and funny.

Love the crazy mix of worries and questions and talk about bras and inexperienced doctors and techs and stress and arguments and ghost cats and grand-kids and labor vs passing stones... and good to see the mx-ers still joining in, too.

--

I had a friend who was dx'd with bc around the same time I was, but she was DC with spots around 1 or 2mm, while I got chemo/lx/rt/etc. for my 3+cm HER+ Grade3 IDC tumor. Some people called what she had barely cancer, but it still stopped her life for a while and whacked her for a loop just getting that dx. It's still a huge thing to get your head around. Anyone who brushes up against cancer, even the SOs and family members, joins a club no one wants to belong to (even though there are also many positives along the way). So there's really no cancer posers around no matter how much or little treatment you have to have, I think. We all know how this stuff affects us and feel a camaraderie. I know I felt a sisterhood with my friend, and she was just the sweetest thing to me, sending me lotions and creams for RT, since she'd gone through it before I did. And she crocheted and sewed me a bunch of caps. It was just so nice to have her there pulling for me, and having an idea herself, of what was going on.

--

Thanks to those who commented on my hard-lumps-in-tumor-bed-4-months-post-lx-concerns! I guess I won't worry about it. I'll wait until I next see my BS, a while from now, since it doesn't seem to be anything that has alarmed anyone. I was mostly just curious about it.

I ran out of bras and am back in my old underwire bra today, and it feels OK. Things are more and more back to normal.

Although the short fuzz for hair will be around for way too long to remind me of things... along with the scars. guh.

Nash54

Horsegirl....what did you think of 50 Things.......I almost bought the book and then thought ah just another BC book of stuff I won't follow. Curious what you thought.

090815.....welcome to the lounge! I know you are ready to get that LX over and done!!!! Best of luck next week.

Outrunning...my BS did not seem to be concerned with the Onco Score for me either...but I asked about it and so he ordered it. Didn't change my treatment plan even though mine came by in the intermediate.

TGIF !!!!!