Lumpectomy Lounge....let's talk!
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I tried to post my preliminary diagnosis of spiculated mass and then post biopsy pathology finding of ADH, but neither are options in posting. I meet with the surgeon on Monday and will be informed further on a lumpectomy and treatment. My diagnosis and treatment may likely change post lumpectomy, and I will continue to browse this site before and after surgery. This site has kept me informed and not so alone.
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A former coworker of mine doesn't have all the details yet but how common is it to need drain(s) after such a lumpectomies below? She has 2 small masses on one breast and one small one in the other. She is very overweight. They are doing double lumpectomy wire localized biopsy procedure.
Oh and also the procedure is this Wed and she's planning on flying 45 min a week later. Assuming no complications, does this sound doable?
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Drains are uncommon after lumpectomy, but not unheard of.
My MO told me that while oral bisphosphonates (Fosamax, Boniva, Actonel) don’t carry the risk of ONJ, they also are not protective against bone mets. Zometa & Prolia are protective against bone mets (in fact, larger and more frequent doses are given to Stage IV patients with bone mets to halt or slow progression). ONJ happens very rarely when Zometa or Prolia are given prophylactically to prevent osteopenia or keep it from becoming osteoporosis, more likely (but still rarely) when taken as Xgeva in bone-mets-treatment doses.
Medicare Part B guidelines now provide that in postmenopausal women on AIs, Prolia is covered (whether or not there has been a diagnosis of osteopenia or osteoporosis). That’s how likely AIs are to cause bone loss. But it sure beats "life loss.” Medicare (and insurance) will also pay for only one DEXA (bone density) scan every two years. So if an MO just does scans and does them often enough to monitor bone loss, the patient will be out of pocket a considerable sum…and if nothing is done in the interim between the first scan when starting AI therapy and the next one two years later, bone loss can progress dramatically. (And that doesn’t even address bone mets).
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I had one drain after my LX. It was in for 4 days total. I feel it could have come out the day after surgery. I can't remember the "fluid cc" amounts that were recorded right now but the first day it was full then after that not much at all. When I called to ask when the drain could come out the phone nurse asked for my total fluid drained and was told come to the office before 4 to have it removed. While I was there 3 other women who had LX the same day were there getting their drains removed. I assume the BS always puts atleast one drain. Interesting the some do not use drains. I almost feel like I didn't need one since so little fluid was actually drained off my breast.
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QMC, I had a drain after my lx but it was because of my axillary lymph node dissection. It was in for two weeks. I wouldn't fly so soon after surgery but it's between her and her doctor.
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Kaso - We are with you on Monday as you meet with your surgeon. You are right treatment plans may change post lumpectomy. Mine actually changed prior. I had surgery date lined up and they wanted an additional test prior with an MRI. And so surgery date was canceled as MRI found an additional lesion. So another wait for the biopsy and another for the results and then surgery.
You should have seen me when I got the call that they canceled my surgery. I asked why and they said that they needed to perform another test(biopsy). I remember being confused and telling the nurse on the phone, I have to have the surgery, there are no more tests!!!
Silly me. Yes there are. And in retrospect, they were right and being thorough. But oh how my mind wanted to have a plan with no twist and turns. Although the waits between results are hard, in the long run they will eventually lead you to a health plan just for you.
Aside, posting the personal info on your page is not easy when there is no options for it. You can type the info out on your "signature" section.
Look forward to hearing how your appt. goes Monday.
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Kaso- praying for a good appt with your surgeon tomorrow. Getting the plan in place is most definitely the hardest part! I had chemo before lumpectomy and that sorta threw me as most that I know had surgery first. I am learning that is more and more common though. As others have said, the internet is not your best friend during these times
.Mustlovepoodles - continued prayers! I hope you are home and getting some rest. Peggy is right - we do what is required of us and it becomes your normal.
Thrilled to say that I am now able to sleep on my left side again!! I always sleep on that side and had not been able to since I had the port placed back in December. Very happy to be deported!
Kim and Susie - how is chemo going? Thinking of you both!
Hope everyone has had a good weekend - it is HOT here in TN!
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ML209- Woohoo on the sleeping on the left side again. Funny . . . "deported". I sleep on my belly and could not wait until that day came. But then sleeping in the bed was probably my biggest accomplishment. I slept in DH's chair for 3 weeks. It is always nice to get some normal back.
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Gardennerd - same here ...... excited to make it back to the bed!!! I slept all propped up for abt 4 weeks. Going for CT scan and mapping for radiation on Tuesday. Any advice?
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ML - I found the most difficult thing about my CT scan and mapping was holding my arms above my head for about 45 minutes. In fact, I couldn't move them when it was over - one of the techs had to help me bring them down. The CT machine is open so there's no claustrophobia and there's only a whirring noise.
It took my oncology center just under a week to complete my plan. Then I went in for my simulation on the linear accelerator. They invited my DH in so he could see the room and the machine. You don't get a treatment during simulation but they check all the positioning.
Each of my treatments takes about 15 minutes, including getting into a gown. The techs take great care in lining you up properly, rolling you a bit this way or that. The science behind these treatments is amazing - I don't understand it at all but am in awe. Who knew there was such a thing as a medical physicist?
I've completed 24 of my 33 treatments. I'm now a little red and have an itchy rash. My two incisions (lumpectomy and SNB) are red and sore. But it's all tolerable. I've been experiencing great fatigue since week 2 - that's the worst SE. I don't like not feeling like myself.
Best of luck with your mapping on Tuesday.
MJ
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Gardennerd - same here ...... excited to make it back to the bed!!! I slept all propped up for abt 4 weeks. Going for CT scan and mapping for radiation on Tuesday. Any advice?
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Thanks ladies. She was stunned when I told her she may need a drain. Not a word about it from her doc. I think even if there's a slim chance, it should be discussed ahead of time- esp on such matters where you don't know for sure until at the procedure.
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I have been advised not to have hormone therapy.
When my details are entered into the NHS Predict program, survival rates are not greatly increased. RO says side effects likely and nasty, therefore not warranted. When I enter details from people on this thread into Predict, the results are similar to mine but everyone is taking hormones.
What am I missing?
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Gobsmacked, your RO told you no Tamoxifen or AIs? Usually it is a medical oncologist (MO) who makes the call. That's his/her specialty. Did you have an Oncotype test done? On the face of it, without your detailed path reports or Oncotype, I am surprised too. Not everyone has SEs from Arimidex or others in its class. Some do. I've been lucky and had no trouble. I recommend you speak with your MO and do tell him what the RO said.
HUGS!
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Hi Peggy
I don't have an MO. Each case is discussed in group meeting - MOs, ROs, surgeons etc. As recommendation was no hormones, I wasn't passed on to MO. My RO is well-versed in hormonal therapy - discussed side effects and ways they compensate for them.
No Oncotype or Ki-67 done on public health system. Costs $4000+ for me to have it done privately. Feeling down-under is Oncotype is not very helpful for predictions. Ki-67 is preferred.
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Ah, I hadn't picked up you are in Australia. I tend to notice less when I'm on my tablet. $4000 is a lot of money. It sounds like a thorough discussions was done on what would be your best course of teatment. When you like and trust all your docs, then it makes sense to follow their recommendations. You have to do what YOU think is best for you, not for anyone else.
HUGS!!
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gobsmacked, same here in France, the public health system does not pay for Oncotype or similar tests, they do not feel that it is clinically useful in most cases and a waste of money. Ki67 was done, though. Having a recurrence score does actually not help that much for treatment decisions in cases, where clinical/pathology features speak against chemo anyway. I also do not have an MO, since I did not have any chemo, and case are discussed in group meetings and I am followed by my BS.
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I have a quick question on Oncotype test. I am premenopausal, although I have had perimenopause symptoms the past 2 years or so (skipping periods, hot flashes) and once again have not had my period for 3 months. Think from the schock of diagnosis. I am high ER + (strong over 91%) PR + (moderate 51-60%) and HER2-. 2 tumors in right breast, largest is 2.3 cm and smaller is 8mms, 1 lymph node is positive (9mm). Left breast is clear. I see my MO tomorrow and wondering if he will continue to go ahead and do my Oncotype test with the positive node. At this point I know I will most likely have chemo but hould I push for it if he is not going to? What else can this test tell us besides the benefit of chemo? Am I correct in assuming with the positive node, chemo is a given? My breast surgeon told me last week that I will now have radiation to armpit as well as breast and that he believed chemo would be advised with the positive node.
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B"H
The oncotype test is for ER\PR positive + up to 3 positive nodes. From my understanding today the focus is more on the tumor itself and less on possible limited nodes that have been effected. The oncotype will tell you how effective chemo would be for the "characteristics" of your pathology up to 3 positive nodes, also referring to the risk factor if you will be on anti-hormonal meds.
all the best to you and all the women here!
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Tappermom - thank you! I have been following along on the June thread that you are on
. I appreciate all the great tips and encouragement! Runnermum - I believe all drs feel differently on the Oncotype testing. My BSO does it on all of his ER+ patients and feels very strongly that it is very worthwhile. He told me it changes the treatment plan in about 30% of patients. He does not focus on staging - the focus is on the specific tumor type, etc. I know it is all so hard because when this all hits us, we don't even know what questions we need to be asking!
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Hi all - first time poster here. I've relied on many of you for information, advice & inspiration during my months in the WWC. Now I'm hoping someone can answer some questions for me ...
I developed some cording after completing radiation & saw an LE physical therapist who helped resolve most of it. However, my PT has ended & I still have one stubborn cord under my arm. It doesn't hurt or limit my range-of-motion & I am only aware of it during certain exercise movements. (I continue to do 30 minutes of PT exercises daily.) Anyone had a cord that eventually went away on its own?
Additionally, I have a seroma in my lumpectomy cavity that has been drained twice (about a cup of fluid each time) but always refills. It occasionally aches a little bit but there's no real discomfort. I'm wearing compression sports bras 24/7 to encourage reabsorption but so far, no luck. I understand that it can take up to a year for the fluid to be absorbed; is there any risk in waiting for this to happen? My BS is happy to drain it but my RO doesn't think that's a good idea. Does wearing a sports bra all the time make a difference?
Thanks again to all of you who have so generously shared your stories. I can't imagine dealing with all of this without you!
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Thanks, ML. This has been such a whirlwind. Everything was moving along so slowly - from my screening mammo in October to diagnostic mammo and US in November, my MRI in December, then my visit with the surgeon in January and finally my biopsy at the beginning of March. From there it sped up. I found this site right at the beginning and started reading like a crazy woman. So many women here have helped me - too many to name as I'd surely leave someoneout and I don't want to hurt any feelings. But I'm thinking of a couple in particular. Their advice and words of encouragement buoyed me up. This site has truly been my lifeline through this unasked-for adventure.
I just want to pay forward some of that encouragement. This is all so new and terrifying. "Talking" to someone who has walked in your shoes is such a big help!
Hope you are doing well, ML. Isn't it amazing how connected we can feel to one another?
MJ
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ML, I have felt pretty well normal all weekend and today. Appetite has returned to full, and I have no real SEs at this point. Of course round 2 is Friday, so I will be anxious if I will have the blah days next Mon/Tues. One day at a time! (Hair is still here on day 11...I'm getting anxious, because I know it shall be leaving me soon.)
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JKL, I too developed a cord a week after my last radiation treatment, but it popped on its own. (You can tell when a cord pops because suddenly the tight feeling is gone and there’s a tiny bruise in its place). I had a mammoth tumor-cavity seroma (and a smaller one the size of a tangerine at the site of the SNB incision). The latter ruptured (and gushed disgustingly noisily) when the glue in the incision failed due to the weight of my breast; the surgeon’s partner expressed the remaining fluid and sutured the incision closed. (The NP wanted me to walk around for weeks packing the stupid thing several times a day so it could “heal on its own from the inside out.” No way José, and the surgeons agreed with me). It filled back up to the size of a large grape before it resorbed and disappeared.
The tumor cavity seroma was deep and didn’t really bother me—the breast was so large that I couldn’t hear or feel any sloshing—until after the second radiation treatment (hypofractionated, i.e., high-dose) when it enlarged so much that my breast bulged on the outer side. I went up more than a cup size (and that breast had previously been—and is once again—the smaller one), and there was some fibrosis, or tissue thickening, surrounding it. Draining it was out of the question, because it’d only have refilled. After my LE specialist (whom I’d consulted about the cording and assigned me a PT) said it wasn’t LE, the PT gave me a couple of "Swell Spot” pads to put in my sleep bra (yes, I slept in a stretch cotton front-close leisure bra for about a year). Slowly it began to resorb. It was 10 cm at first (the size of the cavity), swelled to 14 cm, then back down to 10. It’s now about 6, just big enough to make my operated breast actually look normal rather than deflated (it’s round & perky and a cup size smaller than the left one, which is long, limp & floppy). My surgeon says this is probably as small as it’ll get unless I get a reduction (she’s on the fence about it but gave me an oncoplastics referral should I decide to have a bilateral reduction not just for symmetry but also for upper back pain).
There is no danger in waiting for it to resorb, unless you consider frustration over the wait to be a “danger.” As long as it was drained under sterile circumstances, it shouldn’t get infected. But know that each time it gets lanced & drained the risk of infection and/or a hematoma increases.
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Tappermom - yes, so thankful for the wisdom of those who have walked before me and I believe we should pay it forward. It is a wild roller coaster ride. Things did seem slow at first, but once the the dx came and the specific test results came in the process picked up. I found mine the end of September, right before my son was to have surgery. My dr told me to take care of him and get thru that and then she would get me in the next week for a mammo and U/S. Had that, then waited 3 weeks to get into BSO. He scheduled me for bx the next week. I am very appreciative of my BSO and he is not your typical surgeon. He takes so much time with his patients and explains everything. He told me up front that he does not give any results over the phone .... only face to face. He also gives a cell number and says to text him any time with questions. I only used it two times, but such a comfort to know he was available. Incredibly grateful and yes .... thankful for this family here.
Kim - so glad you are doing well. It does stink that you start feeling well in between chemo and then time to go again. But one down .... moving forward!!! My hair started shedding abt day 14. The day after my second round of chemo I had my husband shave it ----- just wanted to be done with it and not worrying abt it anymore. I had long, thick hair so was leaving a trail everywhere I went. A friend came over as well so we tried to make the best of it. She had been thru this with her sister. Very upsetting for my daughter but my boys kept the jokes coming
. It is coming back in thick, but too much gray. I have colored it forever so no idea what color it was before . Hugs all around!
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Thanks, ChiSandy. Your seroma situation was way worse than mine; I am so sorry you had to go through that. My inclination was to leave both the cord & the seroma to resolve on their own & your experience makes me more comfortable with that choice. BTW, DH & I spent a week in Chicago with friends (a pre-Anastrozole gift to me) in May. What a beautiful city!
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The painter is about halfway finished and today I started culling our stuff. So much stuff! 22 bags went to theift todsy and 5 bags to trash plus a mattress set, 2 sinks, and 2 countertops. Sheesh.
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Poodles, wow! you have gotten tons done. That's a lot of stuff you've removed. And the painting half done? Fantastic. Keep at it. Hopefully you can sell the house soon.
HUGS!
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ML My first Chemo went well. I did have nausea later in the day. Constipation hit pretty quickly as well. Day 2 and 3 were tolerable but food was unappealing. Just the thought of eating makes me gag. I force myself to do it. I did go to work yesterday but left early. I was exhausted came home and slept from 3p.m. til 5 a.m. this morning. I managed to work today and actually felt a little better. I do have the dry mouth. And my emotions are a roller coaster. I didn't think it was going to be this hard. Praying tomorrow gets better!
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Susie, glad you got the first chemo under your belt. Be sure to tell staff what your issues are so they can help you cope with them. I think there's a special rinse/mouthwash for the dry mouth. And I'm pretty sure there are meds for the nausea. Take everything they offer you. That might make it a bit more tolerable. Hope tomorrow is lots better!
HUGS!
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