Lumpectomy Lounge....let's talk!
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My good surgeon took 2 nodes from the R and one from the Left. The R one developed a seroma that took forever to go away, but that and neither lymph area ever gave me any trouble. I appreciated her taking so few nodes when I see some with a similar dx profile having 8 or 10 nodes removed. I do wonder what justifies that?
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ThisIKnow, my surgeon aimed for 3 and an extra 2 came along. Makes a difference. After I moved to Spokane, I got a new MO and he said that I did not have a SLNB - I had Level 1 Axillary Excision. That's more serious. Doesn't matter what the surgeon intended - it's what actually was done. So not all of us who have more than a couple nodes removed were meant to have more. S**t happens.
HUGS!
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My OT, who is lymphodema-certified (forget the correct title), has a chart on her wall that shows the lymph nodes. She said reality isn't like those charts, those nodes aren't perfectly shaped so you can see them and say "OH! A lymph node!" nor are our systems the same.
I bet it's like thinning out a dafodil bed, you're trying to get the one bulb but they're clustered and not coming apart so then you have what PontiacPeggy described: five instead of three.
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Im someone who skipped just about everything the first time around but would never skip SN removal. You really want to know if it has spread etc .. You'll be fine in no time. I would NOT skip that very very important step. REALLY> Hoping for clean margins and clean path report for you.
Not at all sure WHY on earth your BS thinks you have such a low % of recurrence ? I mean no biopsy on nodes yet and no surgery path yet right ? Confused !
HUGS!
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I had 23 nodes removed and I really don’t know why so many. One was affected. My Lympedema PT suggested that maybe having so many removed will help me in the long run. That’s my hope.
I have lymphedema that I control with diet, exercise, stretches and compression garments. It’s well controlled at present so I’m thankful for that.
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thisiknow- my surgeon said she'd take around 3 nodes. She took 5, and explained they were all clustered together. Each of us are different, body sizes, etc...the surgeon does what is best for you.
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When we discussed options, BS stated since tumor was small/caught early, unlikely to have spread to any nodes & sentinel node would give me peace of mind on this. He was correct - nothing in the sentinel node. The incision for the sentinel node was more bothersome, as PontiacPeg described, but glad for the peace of mind.
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PontiacPeggy I am in Snohomish actually...5 hours away
Thank you for the kind words! I have found a lot of peace here with the boards, most certainly. In case anyone else is struggling with pain or sensitivit to fabrics after surgery. I’m finding my old breastfeeding nipple (gel) pads are heaven on this healing boob. So far, any fabric that touches my nipple is quite painful
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Abidu, Dang. Too far away from Spokane - especially in winter. BCO is a wonderful place and I'm glad you found us. Good going for figuring out what makes your poor boob feel better!
HUGS!
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Abidu, I lived in Seattle's U. Dist. for 7 years--practiced law in Bellevue for the last 3 of them. Had friends who lived in Lynnwood. One of my godsons got married and he & his wife now live in Edmonds (she's going to Antioch's Seattle campus for grad school and he's studying photography at Shoreline CC).
My surgeon had planned to take only 2 nodes, but 2 more were "hitchhikers." All 4 were negative. I had trouble with my axillary incision--the weight of my oversized breast pulled it open and its seroma "exploded." Had it sutured (it had just been glued & Steri-Stripped) and no more problems. Be patient--healing takes time, especially the axillary incision because it's located in a "fold" that often rubs against clothing & seams. But I wouldn't have dreamed of skipping SLNB, because there's no accurate way to "stage" your tumor unless you know its lymph node status. In a couple of years, I bet imaging may make SLNB obsolete, but they're not there yet.
My surgeon did such a great oncoplastic job that my R breast looks more normal--rounder & perkier--than the L, which looks like a beagle's ear in comparison. I've had to average the two to get a bra that fits. At diagnosis, I was a 38 I, radiation swelling it to 40 I or even J. Now (50 lbs. lighter) I'm still an I cup, but 36 (in some styles, 34 I or J). Still have to wear oversized button-down shirts (unless I use that "red carpet" fashion tape to keep the placket from gaping).
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Peggy-So thrilled you are free of the Anastrazole! I still have a year left and my doctor will let me stop taking it too. Increase in bone density has been so good with Prolia that I may be able to discontinue it as well
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Katzpjays: I'm glad to be done with my 5 years too. I took Fosamax and have stayed stable. My NP took me off it in November saying that there isn't any proven benefit beyond 5 years. I'm glad that Prolia has been so good for you! I'm just glad I didn't have any SEs that were bothersome.
HUGS!!!
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Hello fellow Arimidex users I have 16 days left on the "drug we love and hate". I will keep you all posted on how things are after I've stopped. I did quite well for the first four years; this year my BP has increased, lipids up a bit, insomnia worse and fatigue and mood a bit worse. All of which could be aging or generally menopausally related....but this gal's hoping to see improvement in 17 days. I'll let you know! 😍🙏
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Reader425 - Jealous! 3 years and 2 weeks to go. Still jealous, in a good way.
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Reader, it must be so nice to see the light at the end of the tunnel. Congrats!
I am 9 months in and so far I do feel just fine for the most part. Interesting you mention blood pressure and lipids. I have always had good blood pressure readings, usually around 112/68, but all of a sudden they have been around 128-136 for a top number and 84-86 for a lower number. My cholesterol numbers which were also always good recently came back with elevated LDL and a blood sugar reading that, while still within normal limits, is higher than usual and higher than it should have been based on my lifestyle. My MO says is is most likely the anastrazole, especially since I had lost some weight and was never really heavy to begin with. I am about 5'7 and weighed 130 at time of diagnosis and am now about 120 lbs. (The weight loss is mostly due to my giving up my nightly glass or two of wine since diagnosis. I still drink occasionally, just not nightly.) I am 52 years old and went through a natural menopause early, beginning around age 37. I have pretty much followed a healthy diet all along, knowing my risk of developing both breast cancer and heart disease due to family history, and I have been physically active my entire life. As a former triathlete, I still participate in both speed and endurance training in swimming and cycling. I felt so defeated when I got those blood test results because I expected they would have been even better than before just due to the weight loss.
Hopefully this is something that will level off for me because otherwise, I don't have any significant complaints about taking my AI and don't want to have to add blood pressure or cholesterol lowering medicines into the mix if following lifestyle recommendations isn't enough.
Now the relentless seroma at my lumpectomy site is another story. That has got to go lol!!
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I am having a lumpectomy for 1 ADH. I had no idea what questions to ask. I have no idea how big the lumpectomy will be or what it might look like. I don’t know what should be done before I leave the hospital or what I need while healing after. It is so hard to get in touch with my surgeon. I don’t even know how to ask for help.
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VeeHow - Welcome! Following are some questions to ask your surgeon as you plan for lumpectomy surgery:
- How many times have you performed lumpectomy?
- What are the risks of lumpectomy?
- How should I prepare for surgery? (Personal note: Nothing to eat/drink after a certain time of day, make sure you wear garments easy to get out/get into - a top that buttons or zips up is helpful - you may also need some type of post surgery bra usually more "compressive" than a regular bra.)
- How long will surgery take?
- How much tissue will be removed?
- How will you decide how wide the lumpectomy margins should be?
- Will you remove any underarm lymph nodes (axillary node dissection) along with the lump? (Personal note: I had 1 sentinel node taken & they inject dye prior to surgery to "find" the node - you will want to be prepared for that injection as it is usually unpleasant/hurts)
- Will I have anesthesia? If so, what kind?
- Will I need blood transfusions? Should I donate my own blood before surgery?
- How will my breast look after lumpectomy?
- Will I need to stay in the hospital after surgery? (Personal note: Believe most lumpectomy surgeries are outpatient, you spend time in recovery post surgery as you are coming out of anesthesia & then go to another "post recovery" area prior to being released.)
- How long will it take to recover? (Personal note: Breast Surgeon only wrote me off work for 7 days for FMLA - I took more. Lumpectomy incision felt ok, but sentinel node was more difficult.)
- Are there any precautions I should take as I recover? Will you give me written instructions to follow?
- Are there exercises I need to do after surgery?
- When can I return to my normal routine and activities?
- Will I be at risk for lymphedema after surgery? (Note: If they take even 1 node, you are at risk for lymphedema.)
Please try going into your profile and entering whatever info you have about your diagnosis/planned treatment & make this info public. That way it will appear here (as mine does below) & we may be able to better help you with your questions. If you do not want to go "public", please PM (private message) me & we can "talk" more discreetly. Will send another message with some other topics you may wish to refer to. Lots to take in - one step at a time. Hope you have some support people in your corner.0 -
Hi VeeHow,
If you use the Search feature and type in ADH, you will find posts where others have discussed this topic. Thinking of you and sending much positive energy for you and your medical team!
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Thank You. I’m going to see if I can e-mail my surgeon for more info. I’ll add my info right away.
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Thank you, will do.
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Sandy, just a few comments on your postings on other forums. One on SLNB. Neither the cute BS or second opinion Northwestern surgeon recommended SNLB for me, entirely, I think, due to my age, BC is the one place being really old is an advantage. So, just imaging and clinical exam of SN. This is from NEJM some years back, a case study on an 85 year old woman. The doctor, part of a panel from Dana Farber writes:
"Taking into account this patient's expected survival, the small likelihood of her having four or more positive nodes, the rarity of axillary recurrence in older patients with hormone-receptor–positive tumors, and the fact that finding positive nodes is not likely to have a dramatic effect on either her care or survival, I would not recommend biopsy of the sentinel lymph node."
Nevertheless, given that I had some focal LVI, I sort of wish I had the certainty that LN were clear.
On a much lighter note we've seen Audra MacDonald several times, the last being at Steppenwolf a few years ago, where during intermission she nursed her baby. She is so great. Also, I went to Dominican U, formerly Rosary College, for Library School. Was a librarian for several years, before going to Loyola for my MSW.
Off to Palm Springs tomorrow for a redo week. Last February I was diagnosed and had a scheduled week long trip tonPalm Springs where I was in total meltdown, a quivering wreck, trying to figure out which hospital, surgeon, terrified of the AI. This year I-will appreciate feeling healthy and calm and grateful.
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Celebrating my one year anniversary of lumpectomy and axillary node (12) surgery. I’ve had one good mammogram and have another plus MRI in two weeks. I’m back to normal but aware, still feeling bruised and some numbness and the new lumps keep me wondering sometimes. I have full rom but feel it when I stretch. I don’t baby my arm and have escaped the predicted ( by both surgeon and radiation onc) lymphadema. Of course I hope it’s over and I am happy to be doing so well. I am working on not condemning myself for not acting earlier. I’ve really been helped by this web site. You know who you are
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Benji69, Congrats on 1 year!! Post-surgery 5-1/2 years, I had physical therapy on my bad side. The muscles felt like they had been re-arranged and pulled funny. Chest, side, arm on my left side all were affected. Luckily not all at the same time usually. Now I wonder why I waited so long! It was my NP (who is my PCP) who suggested the PT. I went to a therapist specializing in BC patients. It was wonderful. Now I have virtually no aches at all. I suggest that you ask for a referral to a BC PT. I had 6 sessions which was more than enough. I am one happy camper!
HUGS!
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Benji - Echoing the congrats. I also got a PT Referral for exercises w/a lymphadema specialist & "baseline" measurements. Helped a lot with rom. Just over 3 years post surgery, however, still have some ouchy moments during certain exercises that seem to pull on the sentinel node incision. During Pilates classes, cannot do anything where lying face down, as surgery breast hurts when pushing into mat. My understanding from BS is that this is due to scar tissue related to radiation. All the best to you as you continue to "recover".
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Just received my 5 year BCI results and looks like I’m doing another 5 years of AI. My recurrence rate was 8.6% with a high benefit of continuing. I’m being referred to rheumatologist for my osteoporosis. Ugh not looking forward to any more meds. Other than that...things are good
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Nash54 - UGH... Getting the additional 5 yrs is a kick in the pants. I'd probably be angry, but end up resigned to it.
I've not hit a full 2 years yet on Anastrozole and I have osteopenia in my hip. I was sent to an endocrinologist, and now I take generic Fosamax 1x a week which is doable. But come May I think I'm asking for Prolia infusion. I think w osteopenia I can get 1 shot yearly. I'll know more in May.
Best of luck on the next step. You've made it 5 years, you can do 5 more. We have to do what's best for us, until we can't.
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Wish I could figure out how to tag and thank several people for input and answers at once, esp. since I tend not to get here for weeks at a time.
LovesToFly, edj3, PontiacPeggy, and CindyNY -- thanks for the longer views! I'm 4+ months out of surgery, 6 weeks out of rad. The whole wound tenderness/sensitivity thing has dropped a good bit, now that the skin damage has mostly healed from rad damage... Had the dreaded first post-surgery mammogram today, and it wasn't NEARLY as bad as I'd feared! My tech's super gentle. The worst part honestly was peeling all the damned stickers off my nips and scar lines, OUCH, esp. that dratted SNB scar! My armpit is still hurty/cranky.
All my bras' Righty cups still pucker in a north/south line. All the inserts I see are thin foam designed to mask nipples, or silicone (DO NOT WANT, hot climate), or push-up things and I can't have just Righty pushed up while Lefty sags! I don't wanna buy new bras with pockets just to keep an insert in place -- and I need an insert thick enough to add maybe a half-cup size to Righty. Lefty's still a DDD. So the search continues. My "best" bras for this now are STILL ancient fugly Caciques with too-small cups because a smaller cup keeps the whole bra away from the armpit.
Rolling over in bed wakes me up, too (but the internal discomfort from movement/swaying/shifting is def better). Still sleeping in bras because I don't want the front scar rubbing against anything -- there are still tiny pieces of scab in place, unbelievably. But bras don't FIT at night if you side-sleep; the top boob falls inward and the bra cup's top inner edge winds up riiiight on the wound, gaaah! I've actually stuck rolled-up crew socks in my cleavage to prevent that! There's gotta be a better way. I thought of tube tops, but too much potential to creep up and hurt the armpit. Sleep bras are horrible now for the same reason; they all settle too close to the 'pit.
My husband's thing turned out to be a FIBROID. Benign but painful. Our surgeon removed it in her office with lidocaine. My surgery was on Righty -- his was on Lefty. Precisely behind his nipple, same location as mine. Our chests are mirror-images now, surgically anyway. Doc laughed and said Husbo just wanted a scar to match mine. And we have perfected the art of the Sideways Hug. While healing, he got those same pain-zaps that WE get. It. Was. Weird.
Hope y'all are doing okay. Several of you are on aromatase inhibitors. I'm supposed to be taking anastrozole, but the hot flashes at night are turning me into a zombie. Discussing with onc on Monday.
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Hi all
Just had lumpectomy ( 2nd go round as I skipped rads almost 8 yrs ago) just this past TUES.
Went to MGH - BS out of town.
All went okay I guess and up until this AM I was alright with things .
Then I saw a big bruise when I woke this AM (SAT) ( it was coming on 3 days ago) to the left <1 inch ?> of my incision. I touched it because it seemed tender.
Pea sized lump under there- not afraid it is cancer.
My cancer was only 5 mm and non palpable,
This happened as a result of the tagging mammo or actual procedure or .. , but it is 'important' or what is it ?Not guessing scar tissue would come that soon.
Anyone have a similar experience right after surgery?
MANY THANKS!
Laurie
edj3 Probably LANA certified ?
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Cynthia : RE: Can someone have a lumpectomy with uncontrolled high blood pressure?
I just did but I trust the hospital very very much- MASSGENERAL Boston. I was at 195/85 when I went in last TUES.Good Luck- we are all different.
My normal BP is 90-60 AND I cannot have it taken in the arms due to biltareal lymphedema. Makes it a real challenge.
Hopefully they can monitor you. Nobody wants to give me meds because meds could make me bottom out if I get to the 'normal' 90-60 again :>0(
Your case may not be as complicated. I sure hope not.Good Luck- we are all different.
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Welcome, new "lumpies!" I'm at 4 years, 6 months post-surgery (4 years, 2 months on letrozole). Had my 6-mo. MO checkup today--my MO said that she'd like me to finish 5 years, and that my risk is about 5%. She'd prefer I go 7, which she considers the "sweet spot," but concedes that at my age, most of the benefit is conferred in the first 5 years. I was diagnosed osteopenic between my lumpectomy and first radiation treatment (two months before starting letrozole). I have GERD, so oral bisphosphonates are out; and I had a horrible experience with a Zometa infusion (took 5 tries to hit a usable vein, it burned with every pulse of the pump, and gave me fever and body aches for days). Fortunately, Medicare came to its senses and decided to cover Prolia under Part B. (I had to do Zometa because at the time, Medicare classified Prolia as a drug because it was injected, but my Part D carrier refused to pay for it).
Prolia must be given twice a year regardless of whether the patient has osteopenia or osteoporosis. Unlike bisphosphonates, which remain in the bones, Prolia's effects wear off after 6 months. The usual protocol is 6 shots over 3 years--but the new thinking is that with osteoporosis one must remain on it for life. I get my third Dexascan next week (Fri. the 13th!). My second one, in 2017, showed improvement (one area even "normal"); if I've gone back to "square one," I have to restart it at least through the end of my 5 years on letrozole.
Letrozole has also slowed my metabolism to the point where I gained >20 lbs. So I was put on a near-keto diet and have lost >50 lbs., but it hasn't been easy. The joint pains are pretty much gone, as are the night sweats. (I think the later your menopause, the milder the side effects of either it or AIs). But two sobering facts are that letrozole raised my "bad" cholesterol and lowered my HDL to the point where I had to go on a statin--which in turn keeps my glucose above 100 even though my a1c went down from a high of 6.2 to 5.4, where it is now. And the other is that the risk of osteoporotic fractures rises dramatically after 5 years on an AI. (I had two "shoe malfunction" falls back in 2018 that caused three arm/hand fractures--2 hairlines at either end of my R radius and 1 of my L scaphoid, a L wrist cartilage tear and a resulting ulnar-shortening ortho surgery--the surgeon says I probably would have had no more than bruises were I not on an AI). So there's that.
After my weight loss, I am still wearing 36I or 34J--to accommodate "lefty" (aka "Thelma;" the operated R one's "Louise"). I had some cording & subclinical LE in the first three months post-op, but my arm is normal now. Nevertheless, I still wear a MedicAlert bracelet (also lists my drug allergies & emergency contact's #) on my R wrist and don't allow blood pressure cuffs or needle sticks on m R arm. The exceptions are cortisone shots when I had a R trigger-thumb, and when I needed that orthopedic surgery on the L, my LE specialist gave the OK so long as the tourniquet came off as soon as the anesthesiologist hit the vein for the IV. I still wear compression for any flights >3 hrs., and in the gym. (Now that I lost weight, and have had my sleeves & gauntlets for >4 yrs., I'd better get new ones).
Peggy, bet you feel relieved to be on the "dry side of the mountains," as the WA COVID-19 cases are west of the Cascades. One of my godsons lives in Edmonds and goes to Shoreline CC, so I'm pretty worried. His wife's at Antioch's Seattle campus, so I'm nervous about her too.
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