Lumpectomy Lounge....let's talk!

annika12

Hi , Haven't been here in a while I did have 2 lumpectomies on the same breast. One at 6 oclock and one at 1 oclock. And then after chemo she went back in on both sites again with lymphnode removal of 30 !! I had a great surgeon and left me with minimal scarring ( actually my left is nicer looking then my other after nursing 3 kids, lol ) I didn't ice anything during chemo (I was busy puking ) a chemo nurse told me to get a good oil and massage my hands and feet , felt great and I had no nail loss (lifting but no loss) and no neoropothy !! Good luck to all of you starting this icky journey, life will return to a new normal sooner then you can imagine

PontiacPeggy

Annika, Good Morning! Sounds like you are doing just fine - good to hear. You certainly had a boat-load of nodes removed! What hormonal therapy are you on? Doing okay with it? Keep it up!

HUGS!

violethope

Thanks for the words of encouragement ladies! I will complete my profile over the next few days.

MLP3

As I head into my appt on Wednesday with bs, med onc and rad onc... I'm trying to get my ducks in order, questions ready and reactions in check to what they have to tell me. I'm a planner, in case you can't tell;)

Anyone out there with a similar diagnosis, what were you next steps? Things you wished were done differently. My gyn told me that a sentinel node biopsy will most likely be done, along with a lumpectomy. The cancer care liaison mentioned "more surgeries" and scans. And of course I'm feeling pain on my right breast and also a fuller feeling under my left dx arm and shoulder and radiating arm pain. But I've also had neck surgery 5 years ago with nerve damage... So hard to tell if it's that or not. But this flare up has th same timing as my initial lump finding and the pain wakes me up. Anyone experience that with node involvement from IDC? Will they check out my right breast now...After I tell them about the pain?

Any advice would be very much appreciated!

Molly50

Violet, Welcome to the lumpy lounge. Sorry you need to be here. Peggy is our chief cheerleader and go to for support. If you are determined to stick with lumpectomy, and I don't blame you, ask for a plastic surgeon consult as well. MLP, I knew my node was positive. It hurt like my tumor. I had two positive nodes and had level l/ll nodes removed during my Lx. Unfortunately between extensive LVI and dirty margins I ended up having a mx later.

MLP3

Sooo... Margin dx is only done via lumpectomy? Or can they tell from initial ultrasound/core biopsy?

CyndiNic

MLP3 - with the exception that I am HER2+ we look to have similar diagnosis. I did a lumpectomy with SNB and did need a re-excision to get clear margins. I had a port installed for chemo as well. The SNB was the most uncomfortable thing to recover from but I was back to normal activities within 4 days. I work full time and my kids are 10&13 so they keep me busy.

I was very comfortable that lumpectomy & radiation (vs MX) was the right choice for me and I don't regret going this route. The whole treatment plan has moved along at a pace that has allowed me to plan as best I can for the next step. I am already 1/3 of the way thru chemo and looking forward to putting that behind me.

Where in MA are you? I am on the north shore and elected to go to a local hospital instead of the city - the team of doctors I ended up with are wonderful and I was comfortable with them from the begining so I stayed with them.

Cyndi

LovesToFly

mlp:

I too felt a lot of achiness in my lump and my lymph node, and I was pretty convinced that it was in my node, which it was. That said, that doesn't mean that I actually knew anything, and it very easily could've been psychosomatic. At that time I also felt a lot of similar pains in my left (well behaved) breast that freaked me out, but her soon as I had my surgery, that went away so I know that was psychosomatic! Also my very first ultrasound showed something in the lymph node that looked suspicious, so of course it was already in my head. I did ask them to check my good brest as well, and although it did not have an ultrasound it did have a mammogram and physical exam from both my BS and MO.

Unfortunately, you will just have to wait-and-see. I do know that generally if they recommend a lumpectomy, it is because from biopsy and imaging they do think that that is the best surgery. Of Course some women do go on to have mastectomy, but if they really think that something you're going to need, hopefully discuss that will be discussed with you before your surgery and I would ask BS how likely they thinks that is.

They can only tell clear margins after your surgery, because they are checking all the edges of the peice they removed to make sure there are no signs of cancer, because of their signs of cancer in the edges there could still be some left in you, so they need to go back in and clean that up. My surgeon told me that she carefully checks before closing with a microscope, and although it is not as perfect as pathology she has a very low rate of unclean margins. I would ask your surgeon if she does any checking. I had actually heard of centers where they send the lump for pathology while you are still on the operating table, and do not close up until they got clear margins, but my center did not do that as they feel there is more risk of being left open on the table and under sedation longer than need be (or so BS said). My surgeon, who I felt very confident in, felt very good about her method. I did get clear margins so I guess it worked for me, but unfortunately there is just no guarantee.

brithael

MLP3 - I had a very similar dx, except I knew going in that I had node involvement as one of my nodes showed up enlarged on the screening mammogram, was biopsied, and came out positive. Chemotherapy was always in the picture for me.

I went for a second opinion, not so much that I worried whether or not it was cancer, but I wondered about different treatment options. The first place I went, (where I was diagnosed) wanted to go for neoadjuvant therapy, while my second opinion place (where I chose to be treated) felt surgery first was the better option. My tumor was only estimated at 1.5 cm (turned out to be 2,) so not sure why neoadjuvant from first place since that's usually used for larger tumors. I'm very pleased with my treatment so far from my second opinion place. My surgeon is incredible, and got clear margins first time, as well as doing reverse mapping on my lymph nodes to try to save me from lymphedema. I only have to have 4 chemo sessions of TC (25% through - yay!) Neoadjuvant would have been more sessions and more lethal drugs.

I never felt any pain from node or breast. My tumor was way down inside my breast and could not be felt by anyone. My regular screening mammogram caught it, thank goodness!

I did have a CT scan and a bone scan from my first place before I even went for my second opinion just to see if there was any metastasis. I don't know if my second opinion place would have done the same; however, it does feel good to know that both scans were clear.

Maybe other surgeries might be some sort of reconstruction on your good breast for symmetry? Ask them if you can.

MLP3

LovestoFly- Great info and I have added those questions to my list that I'm compiling.

Cyndi- I'm also in the Northshore! I had my mamm, us and core bx done at Salem Hospital Breast Center. This wed I'll be at MGH Danvers with Drs that float between Boston and Danvers. Dr McIntyre rad onc, Dr Younger(affiliated also with Dana Farber and Harvard) Med Onc and Dr Coopey bs.

PontiacPeggy

MLP3, my diagnosis is quite like yours. As LovesToFly said, margins pertain to the mass they actually remove. What they want is a certain space between your cancer and the edge, thus the margin. My BS was quite surprised when DCIS turned up in what she removed. She took quite a bit more than normal since I had hematomas from my biopsy (after 6 weeks!) and they couldn't exactly tell what was going on. My BS took 3 nodes and got 2 bonus ones that tagged along and all were clear. She did not check the margins during surgery, nor the nodes. But she called me 2 days later (at dinnertime no less) with the path report so I didn't have to wait over the weekend. I so appreciated that kindness.

If I didn't mention it before, you might get Dr Susan Love's Breast Book which is a comprehensive "bible" of breasts, breast cancers, treatments, SEs and more than you probably wanted to know. She pulls no punches. And while anything in print is out of date before it hits the shelves, it still have valuable information.

I was also told that generally cancer, in early stages anyway, doesn't hurt. However, I had gone to my PCP because my breast DID hurt. I had had a cyst removed 40 years earlier from that exact spot and was concerned. Well, they never did figure out why I was hurting but they found the cancer in a totally different spot (at 6 o'clock rather than the 3 o'clock where I hurt).

You're right on top of things having your questions ready. Be sure to write them down. I keep a word processing file with the doctor's name and appointment date in it and just keep adding questions as I think of them. Then I print it out. Works for me. Your MO can't determine a course of treatment yet since you haven't had surgery with the informative path report and most likely an Oncotype Test but he can tell you what is likely. Your RO will be able to tell you what they plan, just not when. You might inquire if you will have tattoos. There are quite a few varieties of radiation done - running from 5 days to 33 days (which is what I had).

I would think that the stress of the situation is making things hurt. But do mention it to your BS when you see her. Always tell your oncs if something crops up that bothers you.

HUGS!!!

Sloan15

sally, lovestofly and molly - I sent you a Fitbit friend request. Let's see if it works! I'm not sure which email I used since I had a work and home email, but it will have "Sloan" in it somewhere!

Violethope - My case was different than Molly's, so here's a different perspective. I was going to have 2 lumpectomies or a mx, but the biopsy and PET showed only 1 cancer area, so the doc said radiation would shrink the other one. It did, and I can't even feel it now. The reason I went in for an early mammo was the one I could feel and psin under my clavicle/sternum, the but the incidental finding at 9 oclock was my cancer.

For those of you getting chemo, if you're "only" getting 4 rounds of TC, my doc said the nails will be fine. Isn't it weird how things become so relative after bc, like "only 4 rounds of chemo"?

MLP3

I did have leaking fluid from this breasts nipples a few years after breast feeding. Mamm was healthy. Wonder if this all started then?

Peggy... Tattoos for radiation??

Funny... I'm super conservative, more of a preppy type. I've found peace in the White Mts in NH at our ski housethrough all of this via hiking and skiing. I actually want a small tattoo of a pine tree on my wrist to remind me (throughout all of this) of the peace I have up there. My husband thinks I'm crazy, but understands😁

JerseyRenee01

Hi Ladies,

I was only able to catch up on the past couple pages! I missed alot! Happy 2016 Everyone!!!

While we discussing nodes, it looks like my MRI report was now interpreted by my 2nd place & see more info than 1st. Can anyone explain what is meant by:

There are also some prominent left axillary lymph nodes.

Cancer is in left breast but since I read that now fearing worst that spread into nodes & now been down since. The unknowns are just mentally & emotionally depressing me. 😞

My BS was away on vacation & cant get in to see him until 2 days before surgery to go over these last questions I have.

LovesToFly

Renee i'm not sure what that means, my ultrasound report said something similar, I googled it and drove myself crazy. I assume that when you have your surgery they will also do a sentinel node biopsy and you will find out for sure. I know how scary all this is, unfortunately there's really no way but through. Lymph nodes can be prominent or swollen for a variety of reasons, so please don't be too scared yet. I was told by BS that the smaller the tumor was, the less likely it would be to spread. Also yours at stage zero, which is not intrusive, so although I certainly cannot promise you it has not spread, try to stay positive. If it has, you will still get through this! It will just be a bit more work.

Want to let all of you know that I dictate all of my messages, so sorry for the awful typing. I try to edit but I'm not great at it!

LovesToFly

I did a bit more research on the cold cap this morning, turns out that I could still get one in time for Wednesday. In the end I decided to not do it. I know a lot of people, especially my friends, think I'm crazy! it's not a reflection on how upset I am to lose my hair, because I'm heartbroken.

1. I already have very thin fine hair ( hard to tell, because I wear it curly a lot of product), and it seems a lot of people that do this have a fair amount of shedding. With a full head of hair that might be cool, but I can put all my hair in an infant size ponytail holder. If I shed a lot, it won't be much better than losing my hair anyway.

2. As hard as it is, I have already gotten my head around losing my hair. I have probably spent $600 on wigs and other supplies, and of course none of that is returnable.

3. I called my Chemo Clinic, they were not very supportive. They said that that they have only had one patient ever use it, and she was not happy with it. I understand it takes a fair amount of assistance to put it on, and keep up the cold packs which have to be changed every 20 minutes. Even if I do get lifts to and from every chemo, I highly doubt that I will have someone sitting with me for the three hours every time (and I don't want that), and since the clinic seemed unsupportive, I'm not counting on them to help me with this. I will have an IV in one arm, and doubt I will be able to manage it myself.

I feel better now that I have looked into it a bit more thoroughly, and decided it's not for me. That said, a lot of people are very happy with it, and if my hair was thicker and fuller and I knew that I would have someone with me for all my infusions, or I was going to a clinic that was used to them and very helpful with them, maybe I would feel differently. I definitely think it's worth looking into for those of you going into chemo, if you can afford it and are interested. I looked at the penguin chemo ca, which is the most popular one, it is $700 a month to rent in Canada and they can ship it to you next day.

JerseyRenee01

Thank you LovesToFly!

A SNB is going to be done. He said take 1-2 nodes. As I understand that being done as a 2nd area next to my calcifications showed on MRI AFTER Biopsy was done. This area didnt show on my 3D mammo with calcifications so hoping it scar tissue, result from biopsy. An ultrasound was done Dec 22 & it still couldnt determine that 2nd area. The 2 areas will be wired together to be removed.

PontiacPeggy

MLP3, yes, tattoos for radiation. They are tiny and hard to see by now. Sometimes they are done in a rectangle around your breast. Mine were done on a straight line from rib cage left to rib cage right to one in the middle, all below the bra line. My oldest son has several tattoos so I felt I could brag on mine. And they don't hurt. Not every center does tats. Some use magic markers or other ways to mark the area being zapped. I absolutely do not have the guts to get a real tattoo.

JerseyRenee, LovesToFly is right. Don't your lymph nodes in your neck swell when you have an infection? That could be what's going on. I would definitely ask about it but try not to obsess (easy to say, hard to do). Couldn't you call your BS, leave your question as a message and have him return your call? BTW, my actual tumor was 9mm, so very teeny. That being said, since she wanted to make sure that everything was clear, she took a 5.5 x 3.5 x 2.5 cm chunk out. You can't tell since it was on the bottom and she made it so the top of my breast is quite full appearing (hard to do when you're an A cup).

HUGS!

JerseyRenee01

PontiacPeggy:

I was trying to avoid being more a pain in the A**! Remember I personally emailed him on his vaca asking bout being tested HER2 & the reply was come back in as I clearly am not settled!??

Oh I am an A as well. He doing a lift on both , filling tissue at top. I said good luck working with the little bit you have.

PontiacPeggy

JerseyRenee, I remember you posting that about not being "settled." That wouldn't win him brownie points in my book. In fact, I'd have been quite pissed off. Tough sh*t if he doesn't like questions - he'd get them anyway. HER2 is pretty standard. IIRC mine came with my biopsy report. Doesn't mean it can't change since they have more to play with when they are removing the tumor. I'm very interested in hearing how you do with your lift. I decided early on, no more surgery. And I don't need it cosmetically so it's not an issue.

You are settled and smart. He is the one "un-settled."

HUGS!

Sloan15

Yeah, what she ^ said!

JerseyRenee01

PontiacPeggy:

I was upset by that reply! At this point & itbeing second opinion BS that I chose, I dont want to stir things up with the man doing my surgery! Ugh!!!

Trust me I have a mouth & not afraid to use it. I will be speaking to him on the 12th. That reply had me & still has me very upset.

JerseyRenee01

sloan15:

Ha!

LoveMyVizsla

I was having pain in my breast and that is how my tumor was found, I found it. I went in for a mammo the next week and it could not be seen by the machine.

What about getting a white tattoo of the pine tree? It would be less visible, but still there. I think the white ones are pretty.

PontiacPeggy

LMV, white tattoos? Something new to me (not surprising since I know nothing ).

JerseyRenee, I gotcha. I guess my mouth would stay shut even if I had to sew it shut but it sure would be hard. If he's not a total ass otherwise, I suppose you could cut him some slack, especially since you said you called him on vacation iirc. Argh. What we tolerate!

HUGS!!

MJS1266

Re Icing for Taxol: It is primarily to prevent or lessen Neuropathy but also is for nails. I participated in a study and the center did everything for it. I did develop Neuropathy but according to the research staff the majority of the women in the study did not have any neuropathy. I did keep my nails although they got thick and discolored particularly my toes. Some months after chemo stopped, I had worse neuropathy which concerned the MO because that is not the normal pattern. She did some tests and it turned out that I had boderline B 12 deficiency which can also cause neuropathy. Since I started on B 12 supplements it has improved. While it is annoying and I would just as soon not have to deal with it, it is not painful and has not limited my activity. They say severity of SE's has nothing to do with effectiveness of Chemo but I did get a complete pathologic response which is not that common with ER+/PR+ BC.

Re Adriamycin: Icing your mouth during Adriamycin is recommended to prevent mouth sores. I iced religiously for the whole 20 minutes alternating between crushed ice and fruit popsicles. I only once got a mouth sore, so I think it helped.

JerseyRenee01

PontiacPeggy:

It so hard!!! My feelings were hurt. Dont get me wrong he answers every question at my appointments & explains. I think it his personality! Like my sis n law said, I dont want to be buddies with him, what important is his knowledge & skills.

He did forward my email to his secretary to get me that appt made.

Ohh my surgery is Thursday, Jan 14. EEEK next week! Will husband need to take off next day to be with me? Not sure what I am in for, also getting the SNB.

PontiacPeggy

JerseyRenee, I hear ya. As long as you trust him professionally, that's what counts right now. Hopefully you'll have a better relationship with your MO and RO. I'll bet it's nice to have a surgery date. Now you have something concrete to plan on. I think it would be very helpful if DH took the day off to be with you (he'll be with you for the surgery?). You probably will feel okay but it will be nice to have someone wait on you for a few days so you don't overdo it.

SNB is the annoying thing. Do exactly what they recommend for exercises. My BS and staff didn't recommend anything but I had read tons here and knew I had to "walk" my hand up a wall to stretch it out. I had full range of motion not long after my surgery. It didn't actually hurt, as in real pain, but geez everything bothered it. Bras, t-shirts, blouses. Sweatshirts were my friend! Tight armholes were not. Ice was very good. DH had a urinary tract infection a week after my surgery and at 10PM #1 son and I took him to the ER. I had helped keep him from falling (at 200 lbs) and had really overdone it with my bad arm to keep him off the floor (and my 225 lb son was helping too - one of us on each side of DH). One kind ER nurse got me Tylenol. It was a nightmare. I don't recommend it.

Let us know if you have more questions!

HUGS!

JerseyRenee01

PontiacPeggy:

Wow, I am sorry you went through that with your DH! That must have been so hard & right after your surgery!

My husband is taking me to surgery & my 21 yr old daughter is hoping to get off work & go too.

I have 3 little dogs that are umbillically attached to me so it will be a challenge with them.

Thank you for your help!

I do have Ativan to take & never have taken before! I get nervous taking stuff! They said take before the MRI before surgery. Any idea how long that will take? Placing the wires?

I did go through the Stereotactic biopsy & MRI with no meds.

HappyHammer

LovetoFly- Think the others have given great advice abt chemo and getting there and all. My DH took me and stayed at every session and sister was there a lot as well. My treatments took about 5-6 hours each and involved lots of pre-meds and benedryl so I talked with them until the Ben kicked in and then slept awhile and was really groggy for the rest of the afternoon. We took snacks (for them), drank LOTS of water, played scrabble and had Pandora on headphones. Found days 3 or 4 thru 5 or 6 were the hardest. The last 2 were abit harder and I was extremely tired. I really got on a schedule...bed by 9pm, kept saltines/water and nausea meds by the bed and usually ate a cracker or two at bedtime and right when I got up- really seemed to quell any nausea along with the meds. I was overweight and lost about 35 lbs or so during chemo, Have kept all but 5 pounds off and am working to get more off- the holidays didn't help since food tasted so good and bad stuff was readily available.

I really try to not eat processed foods, use cage free/antibiotic free eggs/ rarely eat red meat and when we do- it's as anti-biotic free as possible/ same with chicken...costs more than the other stuff so have gone back to meal planning even though it's just DH and me at home. Increased vitamin intake especially D...Fitbit is helping me keep track of steps- 2 weeks of rain kept me from goal of 10,000 a day but sun is back out so should be able to get it done.

There have been lots of "silver linings" on this journey for which I am grateful.

Peggy- yo ARE a wonderful voice on the other end of the computer and so full of positive ways to deal with things.

ItalyChick- Good gravy, girl- you rock! Still biking after 5 stitches...wow!

Sloan- YES, I want to do the FitBit friend thing...y'all please tell me how.

NoraNurse- thinking of you as you await the path..one of the hardest parts.