Lumpectomy Lounge....let's talk!

TennisPink

MLP3 - I am getting my care at BIDMC (I was going to ask you the same!)

ChiSandy - thank you for posting your surgery day experience, too! And your lumpectomy decision. I definitely think you got a pass for breaking your Yom Kippur fast that day! And so glad you had such a good outcome and low Oncotype score! Hope you have a good Passover this weekend (headed off to our family Seder on Friday night!)

NoUgoCa - thank you for sharing your story, too. My BS went over a few things other than Lymphedema that can happen after the lymph node removal, and I wonder if she was referring to your condition (she talked in general terms about certain pains/problems that can happen)

ChiSandy

I had been warned by my BS' NP that lymphedema was a possibility even with an SNB (the chances proportionate to the number of nodes removed), and also told about cording (axillary web syndrome), which she said was rarer. She said (and internet research agreed) that LW was more likely to occur in obese women, and that if thin women had complications it was usually cording instead. Well, I got both--and had only 4 nodes out. My LE originally manifested as some mild non-visible forearm cording (just a pulling sensation when extending & rotating my arm), which resolved on its own but still led me to see a specialist who diagnosed Stage 0 “subclinical" (no measurement discrepancy) LE and referred me for LE PT. After my second session, I lifted one heavy guitar case about 4 feet and scooped some hard ice cream....and began getting pitting in my forearm and tightness in my thumb & fingers. At my next session the therapist diagnosed my LE as Stage 1 and noticed visible cording running from my axilla to about 1/4 of the way down my inner upper arm. She was able to massage away the cording, and my ending measurements were either the same as when I started or smaller.

I suspect that what may have contributed to both the LE and the cording was that at 3 weeks post-op (a day after both my BS followup and RO consult) the SNB incision ruptured spontaneously and the tangerine-sized seroma beneath it exploded. The BS who sutured it said my breast was too big to let it heal on its own because the weight of it--which likely contributed to the incision pulling open--would keep the incision open and vulnerable to infection. (His NP had insisted I just keep packing it and changing the dressings a few times a day for several weeks to MONTHS!!!). So he sutured it, and the stitches held and were able to be removed. That seroma has since shrunk to smaller than a grape. (The one inside the tumor cavity is taking considerably longer, but keeping my breast from shrinking below its pre-op size).

All in all, I'm counting my blessings. I had very little pain (mostly soreness in my armpit) and no fatigue from surgery. The seroma incident was a pothole in the road. I made it through rads without irritation, fatigue or broken skin--just a bulge on the side of my breast, and it's slowly receding. I was able to skip chemo, and so I have all my hair and no neuropathy. And though I'm having some SE's from letrozole, they're milder than many women get: night sweats instead of hot flashes, mild joint pain & stiffness, and only modest weight gain despite increased appetite. A friend whose mom had BC (mx and chemo) told me when I was diagnosed that “you’ll have a really shitty year and then you’ll be fine.” I had only a somewhat sucky few months, and I pretty much feel fine again.

bobbin2

HuskerFan I showed up on here yesterday asking the same questions as you. I just turned 46, I'm scheduled for surgery 5/13. I was diagnosed in early march so I've been pondering this all for a while. I see the PS tomorrow. My surgeon wanted me to consult with a PS when I said I was worried about asymmetry. I am a 36D and wouldn't mind being smaller but would never consider elective surgery. But now that I'm faced with a LX I think I might prefer a reduction in the other breast to create some symmetry. My R which has the tumor is already smaller. My doc said it would be covered by insurance but they also want to do it all at the same time. The hardest part for me is trying to make the decision before I know if it will really be noticeable or not. Hopefully the PS will be able to give me some good info tomorrow. I will report back.

Bootscootin

Husker and Bobbin...I had a bilateral reduction at the same time as my lumpectomy. I was a 38G before diagnosis and a large C/small D now. Recovery was easy. I took a week off from work. I spent one night in the hospital and had a friend stay the day and night after I got out of the hospital. I went right back to taking care of myself including walking my dogs. My only regret is that I didn't do the reduction 20 years ago

Bootscootin

Husker and Bobbin...I had a bilateral reduction at the same time as my lumpectomy. I was a 38G before diagnosis and a large C/small D now. Recovery was easy. I took a week off from work. I spent one night in the hospital and had a friend stay the day and night after I got out of the hospital. I went right back to taking care of myself including walking my dogs. My only regret is that I didn't do the reduction 20 years ago

614

Dear Poodles:  I am sending both you and your husband hugs and prayers.  Good luck.

My experience is that you MUST have your doctor write in the report that a breast reduction and a breast lift is "medically necessary".  My PS recommended that I have a breast reduction and a breast lift because he said that I would have been "deformed" from the surgery if I did not choose this option.  I had 2 lumps that were not near each other.  My malignancy lump was at 11:00 and the 4cm "benign" palpable lump (which turned out to contain Invasive Tubular Carcinoma, Pleomorphic LCIS, and numerous types of atypias) was at 2:00.  My BS had to remove 12 cm of tissue in my surgery.   My PS told me that my nipples would not be even and my breasts would be different sizes if I did not have the oncoplasty.  I thought that it was a WONDERFUL idea.  My breasts are gorgeous now. 

The law states that cosmetic surgery will be covered by insurance for a breast cancer diagnosis if the surgery will cause a deformity.  Anything can be considered a deformity so insurance should cover any BC procedure.  I would highly recommend oncoplasty.  I recovered from my surgery immediately.  There are numerous scars to both breasts but it is not painful and you will be fine.  I took pain meds just in case but I did not need them at all. (I had just had knee surgery and I did not take the pain meds a few hours after surgery because I was not in pain. That night, the pain hit all at once without warning.  I was in excruciating pain.  I did not want this to happen after my BC surgery.)  I was totally fine the next day after my double lx/oncoplasty. The worst part for me was having to sleep on my back and of course, recovering from the SLNB surgery. 

Unfortunately, in my case, my insurance company denied my claim for the reduction/lift to my right breast.  They said that it was cosmetic surgery and that it would not be covered.  My insurance company paid for my left (BC) breast surgery and reconstruction.  I had to fight my insurance company to pay for my right breast surgery while fighting BC.  It was loads of fun!!! Not.  Ultimately, my insurance company paid for my entire surgery but it was a stressful and VERY long battle.  All that you have to do is to make sure that your doctor uses the terminology, "Medically Necessary" and your insurance company should cover your procedure.

As I stated, my pathology report indicated that I had invasive tubular carcinoma as a second primary breast cancer.  However, I was told that the lumpectomy was all that I needed for this type of cancer.  It is not aggressive.  I had radiation (the Canadian/UK radiation tx of 3 weeks plus one week of boosts -higher dose rads for less weeks consisting of the same total radiation given rather than the 6 week rad tx plan) and I am taking Arimidex/Anastrazole because I was diagnosed with pleomorphic invasive lobular carcinoma and bifocal pleomorphic lobular carcinoma in situ.  My pleomorphic lobular diagnosis terrifies me. My invasive tubular carcinoma dx does not worry me at all and it is not on my "radar".  Good luck with your tx plan and your next surgery.  I would ask for a SLNB surgery if I were you too just to be sure that you are ok.

My surgery was a little different.  I had the radioactive seed implantation the day prior to my surgery.  I did not have the wire localization.  I did not have the blue dye that people on this forum have spoken about because I did not pee blue. I had an injection of dye so that my BS could locate my sentinal lymph node. 

I arrived at 8:00am for my scheduled surgery.  My BS was backed up because the patient that was having surgery before me had complications.  My surgery was delayed.  I was called back at approximately 10:00am but it took some time before my operation started.  I do not know how long I was in surgery.  My surgery was a major procedure because I had a double lumpectomy which removed 12 cm of tissue and I had oncoplasty at the same time.  They did not get the margins so they had to go back in to remove additional tissue.  They knew this during my surgery.  Because they were able to check during surgery, my BS was able to get clean margins and I did not have to go back for a second surgery.  I was very lucky because it is often hard to get clean margins with invasive lobular carcinoma.  My surgery ended at approximately 6pm.  My BS decided to keep me in the hospital over night as a precaution but she said that I could have gone home. (No one expected me to remain in the hospital overnight. It was not planned.) Apparently, I put on a comedy routine for my BS and my mom.  They were laughing out loud.  I don't remember a thing.  I was totally incoherent from the anesthesia.  It was a good thing that I remained in the hospital.  I woke up the next morning feeling totally fine and I was sent home.  I was able to function right away and I did not have any pain aside from my SLNB surgery. I was given heated gowns too.

I had previously had 3 other lumpectomy surgerys - one of these surgeries was also a double lumpectomy.  I recovered from all of these surgeries immediately.  They were all outpatient and I went back to work the next day. (I did not have SLNB surgery for any of these lx's. These were excisional biopsies years ago and they were all benign.)   My BC surgery was different because I had the SLNB and because I was on summer break.   I am a high school Guidance Counselor.  I was extremely fortunate because I was diagnosed in June and I had my surgery on July 22.  I was off from work at the time, although I was working P/T summer school.   I went back to work at the beginning of August.  School starts earlier in Florida then in the North East (I'm from NY) and Guidance Counselors have to go back to work at my school earlier than teachers. 

My daughter had a lumpectomy to remove a 4cm X 3cm benign fibroadenoma and she recovered immediately too.  She did not have plastic surgery and she looks absolutely fine. There is no noticeable difference to the size of her breasts.  I guess that because she had her surgery when she was 17 years old and her breasts were still developing that the tissue just filled in on its own.  She felt fine the next day too.  

Good luck and I hope that some questions were answered from my story.  Good luck to all of you getting results and for those of you having/recovering from surgery.

 

 

614

When I was diagnosed, I was told that the survival rate was the same whether a person opted for a mastectomy or a lumpectomy plus radiation.  I went for more than one opinion.  I was led to believe that I should have a mastectomy.  However, when I went to M.D. Anderson Cancer Center, I was told that a mastectomy was not necessary.  When I found out that I could have a double lumpectomy with a breast reduction/breast lift, I was thrilled.  It was a "no brainer" for me and I chose lx.  However, the first radiologist whom I met with in Florida told me that I absolutely needed to have a double mastectomy or my cancer would return.  I had just completed my lx surgery.  I was floored.  This RO could not have possibly said that my cancer would definitely return but that is what I heard.  I was so upset.  I contacted my BS, my RO from Texas, and my MO and they all reassured me that I did not have to have a double mastectomy and that I would be fine.  The lx, the rads, the ovary suppression and ultimately my oophorectomy, and the Arimidex/Anastrazole should prevent a recurrence.  I am glad that I had the double lx rather than a double mastectomy.  I am ok with constant imaging surveillance.  I am glad that I still have my breasts.  I can always opt for a double mastectomy in the future but the other way around is final and there are no "do overs".  The decision is a personal one but the lx was the best choice for me.  I am happy.  Good luck with your decision.

Katzpjays

My experience on surgery day was almost a mirror of ChiSandy's, except for my BS injecting the blue dye after I was anesthetized. Made me pee blue like a smurf for ~ 24 hours. Just waiting for the Oncotype score to rule out chemo...fingers crossed

Katzpjays

Poodles - sending up prayers for you and your DH. Hugs to you both

mustlovepoodles

Damn, tbalding! I hate that the BS couldn't get clean margins. It sucks to have to go back to surgery. I had that happen, too, and it wasn't a cake walk. I agree with you getting a SNB, especially since you now have a bit of IDC and not just DCIS. Hopefully, they'll get it all on the second go.

Moondust

Katzpjays, I am keeping my fingers crossed for your low Oncoscore!!!

tbalding, I'm really sorry you will have to go back to surgery to fix the margins. I'll keep my fingers crossed for you too!

Poodles, I haven't run out of fingers yet, so I'll keep the rest of them crossed for your DH to have a clean scan.

Peggy, thanks for the hug

I'm too tired for more comments - maybe tomorrow

ORknitter

Poodles, I'm sending good thoughts your way. My husband had a radical prostatectomy 20 years ago and is still here today. I have forgotten his Gleason score but I do remember it was extremely high. Let us know how things go please

chipsy83

Just jumping in to say Hi. I have refused social media in any form for a little over a week and spent much needed time with my babies. Them boys are just so sweet.....

I am officially 4 weeks smoke free today. And next Monday will be 4 weeks since my lumpectomy. Its very sore but very numb at the same time. Sure is the strangest feeling.

Y'all have a good day.

PontiacPeggy

Chipsy83, Way to go on being 4 weeks smoke-free! Keep it up. I'm rather surprised that you are still sore. You don't show what your surgery was (or it isn't made public in your profile - please do that to help us help you). Is it your breast that's sore or your underarm? My SLNB site was numb for a year and then full feeling came back. My breast wasn't sore after a couple weeks. At least not in normal living. Are you wearing a good supportive bra? No underwires?

HUGS!

Grazy

Chipsy, you must feel so much better being smoke-free for four weeks - good for you! I'm still very numb close to the SLNB area, but feeling is creeping back in toward the outer surrounding area that was also numb initially. Still waiting to fully feel the razor on that half of my underarm Several people have mentioned that it takes a good year to get the sensation back completely.

Poodles, I'm sending warm thoughts and strength to you and your husband.

Katzpjs, it's stressful waiting for that Oncotype score (I went through that myself very recently!). I got several opinions on my pathology and score and feel completely content in my decision.

I hope MLP and LovesToFly are hanging in there now that it's a few days post-final chemo treatment.

It's hard to keep up with this thread, but sending good thoughts to everyone who has posted. I go for my radiation planning session tomorrow and I'm very glad to just get going on that treatment and put it behind me by summertime. I'm also very glad that we typically do shorter sessions here in Canada (as they also do in the UK) so hopefully that means I won't have the same skin issues that so many talk about - will be interesting to see how it plays out. I was initially told I'd do 16 'fractions' plus 4 boosts for a total of four weeks, but I'll hear tomorrow what my RO has in store for me. Someone a while back on another thread asked what this "Canadian protocol" is all about, so if anyone here is curious, this link explains. https://newsatjama.jama.com/2013/09/20/study-confi...

Have a good day, everyone!

MLP3

grazy- my ro is recommending the "new black" in radiation treatments based on the uk and Canadian studies. Initially my mo said 6 weeks(5 weeks whole breast with a one week boost). Now I'm doing 4 weeks total(3 weeks whole breast with one boost week). It's called hyerfraction radiation... I think if I remembered it correctly. If it has the same results, I'm all for shorter treatments and travel time heading into summer

Grazy

MLP - that's great! I love it - "the new black" in radiation treatment! When will you begin your treatments? It really should take less of a toll on us, the shorter timeframe.

always have to edit for missed words post-pressing send!

LovesToFly

I have my consult with my RO next week, I have saved that study to discussif he recommends a longer course of radiation. If it's just as effective I too would like to do the shorter one and be done with this by summer!

Taxotore has hit me like clockwork, after 2 good days am now feeling crappy. Achy all over, weak and tired, and everything is buzzing. Hopefully I will get through the worst of it today. Planning to binge watch Kimmy Schmidt.

PontiacPeggy

Jill, Damn. I'm sure it helps (sort of) that the SEs are so predictable - at least you know how long they are likely to last. Doesn't make you feel one bit better though. Hope they pass quickly. It would be nice you could have the "short course" of radiation. My center was 10 minutes away (when at home) and 2 minutes when DH was in the hospital (for 3 weeks of them) so it wasn't a hardship going through 6 weeks.

HUGS!

Grazy

LovesToFly - I would imagine the shorter course would be automatic for you, being Canadian as well, as they've been doing it that way here for years and years -- unless there is something unique to your case that warrants a different course, which I'm sure does happen with patients. Will be interesting to see what your RO says and compare notes. When I had my initial RO consult, it was with the head of the radiation dept at my cancer center who told me the 3 weeks plus 1, but I'm seeing my own RO tomorrow - her opinion may differ once she's reviewed my file. I'll report in late tomorrow afternoon once I get home if I have a chance - I'll be flying home from the hospital and heading to Kingston immediately afterward though to move my older daughter home from uni for the summer. Rush, rush, rush - it's been that kind of week - . I'm either flying up the 404 to tend to my elderly mom, or back down the 401 for my own life here. Hope you feel better very soon! So glad you've had your last chemo treatment.

LovesToFly

thanks! I hope you're right. I don't even know what radiation the people I know that have gone through this have done, except my mother-in-law who said she did it once a week for five weeks which makes absolutely zero sense.

Hope everything goes well for you tomorrow! Lovely that your daughter is coming home for the summer

mustlovepoodles

Jill, I had the same experience with C/T, like clockwork. 2 days of great, then a day of not great, tnen about 7 days of yuck, followed by 5 days of meh. And finally 8 days of pretty good. Hopefully, it will soon be behind you.

Chipsy. 4 weeks non-smoking is quite the feat! Here's hoping you can continue to heal and play with your babies.

Thank yiu, everyone, for your positive energy. We haven't heard anything yet. We're trying to not think about it too much.

ChiSandy

My surgeon’s NP had said to expect either 4 or 6 weeks, but at my initial RO consult the RO told me that he’d just finished participating in a study showing an even shorter version (16 sessions, period, all higher-dose, to just the tumor bed and a smallish margin) of the Canadian protocol yielded recurrence results identical to the usual 33-session protocol in women >60 y.o. with stage IA Luminal A tumors. He gave me a choice, so I went with the 16-session protocol (in retrospect, they were probably all boosts) and am satisfied with it. Perhaps the 33-session full Monty might not have enlarged my breast seroma, but I am sure I’d have had skin issues and fatigue--neither of which I had (other than pinkness & tanning) with the shorter protocol.

LovesToFly

I am 42, so I suppose that wouldn't be an option for me. I'm not sure what impact age will have yet!

ChiSandy

You never know. The trial my RO helped conduct was based on the Canadian protocol (which as I understand it is universal in Canada regardless of age). You will probably get some boosts (no doubt because you were stage IIA), but your treatment will be shorter than the standard US protocol of 33 sessions.

Sloan15

Hi there. Just finished re-landscaping my front yard to drought tolerant plants, so I've been offline for a while. We cut out 1000 sq ft of sod out of the front yard. Instead of hauling it to the green waste site, I put it on Craigs List for free and people actually hauled it away for us! Moral of the story: Put anything on those sites and people take it! I even sae a "free couch, missing one seat cushion." Haha!

Welcome new people. Here's to low Oncotest scores for you!

I'm leaving tomorrow for France for 5 weeks. Yay. So you ladies will be in my heart and not forgotten while I'm gone. Your support is so wonderful.

Peggy- You'll be all moved in when I get back! We'll see how Moondust is doing, and Molly, Moondust, Octogirl and I are still t talking about a camping road trip up to see you.

Moondust - Hugs to you sister. See you when I get back.

Molly - if I can get to downtown soon, I'll text you. We're at my DH eye doc at UCLA. He has RP, but got a good report!

Sherylb3733

I am just wondering if there is any help for the cost of all the procedures I will need. This has caused me so much stress I feel like I could sleep all day.

Moondust

Sloan, Bon Voyage!! Have a great time and eat some good French food for me (especially pastries )

MLP, hooray for getting a shorter rads course of tx! LTF, I hope you get it too!

Chipsy, BIG congrats on being 4 weeks smoke-free! Keep it up and get support if you need it!!!

Heathet, still waiting for you to check in!

I had my baseline dexascan this morning. One of the easier tests. The tech wouldn't tell me what she thought of my scan - I'll have to wait for the doctor to tell me. My shoulder is feeling much better now that I'm 2.5 weeks post-rads. I think all ROs claim that such symptoms cannot possibly be related to rads, but I don't believe it for a minute!

PontiacPeggy

Sloan, my son is envious. He loves France. Do have a wonderful time. 'Fraid I don't move until June 17th (oh, please hurry; get the house sold too). I cannot wait. You have proved that someone always wants something. Although sod is quite expensive so not surprised. The couch? Well, that's something else

HUGS!

123JustMe

Sheryl,

You may want to check with your local cancer society or United Way. They may be able to point you in the right direction or may have a social worker who can help you find some resources. A hospital social worker may be able to help you also