Lumpectomy Lounge....let's talk!
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I'm 44 and just diagnosed with IDC. I'm stage 1, grade 3. Here is my dilemma. The cancer is in the RIGHT breast. However, the MRI showed 3 spots in the LEFT breast they wanted to do biopsies on. I went in for US and they were unable to locate those 3 areas. So a MRI with biopsies was ordered( this was all being done by the hospital's women center and no doctor was making these decisions). I had an appointment with a breast surgeon 3 days before that MRI with biopsies was scheduled and she said not to worry about left breast it was "an overkill on their part". So I didn't go to that MRI appointment. I did the gene testing(BRCA1 & BRCA2) and it came back negative. The doc said if it was positive I would need a bilateral mastectomy but if negative the partial mastectomy(lumpectomy) would be sufficient. Therefore, if my chances of recurrence are the same with both surgeries why would a mastectomy be the preferred surgery if gene was positive? It must have a better outcome over lumpectomies. She feels a lumpectomy followed by radiation and Tamoxifen would be my cure. The medical oncologist agrees with her. I'm torn about just letting the left breast go and do the watch and wait route. My fear is because my aunt had breast cancer in 1992 at the age of 35 and then reoccurred in 2002 that spread to her bones and brain killing her at 45 years old. I am torn between what to do but I have to tell you I just spent a long time reading these posts and I'm feeling a little more comfortable with my surgeons recommendations. I was leaning towards bilateral mastectomy but now I'm thinking lumpectomy may be the way to go! How long is the recovery time? What are the restrictions such as washing hair and getting surgical site wet? Thank you to all of you who shared your experience, I cannot tell you how helpful it has been. My surgery is scheduled for May 5, 2017. I need to get prepared! I didn't even call a radiation oncologist because I thought I wouldn't go that route, when will radiation start after surgery?
Also, my surgeon calls it a "partial mastectomy" not a lumpectomy! I still need to learn the abbreviations!
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Sorry VelvetPoppy, I misread your info. Mixed up the diagnosis with surgery. And don't ask me how? Its plainly stated. Could be that glass of Baileys Irish Crème on the rocks I decided to enjoy after work today. : )
I thought the process of tests are a bit out of wack from what I'm experiencing but wow, I would hate to think the time being stretched out over the holidays.
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Moondust... Thank You.. my brother's passing was expected, but it's the finality.. have some good memories.
Robin, I pushed back my rads for a week til my insurance kicked in and they told me I lost mass... Now I have mutt and jeff, I found if I wear a sports bra, it does show the difference, if I wear one just plain, that doesn't 'separate' it hides it better
I never had an mri, both my knees are metal, so just had the biopsy, only saw the bs before surgery and her np after, it wasn't a good follow up and seeing the ro np was about the same... now all I see is my mo, and supposed to have my first mammo in june.. waiting for that to 'finalize' this part of bc.. don't know what I will do after, thinking about stopping the arimidex, but it's a couple of months yet and things can change..
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Welcome Susie 2017. I am new also. I have IDC in right breast as you do. And the size is less than 1cm. This forum is absolutely filled with so much info and you are right to read as much as you can. And it does give a feeling of validation in what your medical team suggests you should do. It has helped me calm the numerous doubts and questions I have. The ladies are all generous to share.
I am a firm believer the more you are informed the better your choices will be and more importantly the better questions you ask of your medical team. We have a patient advocate assigned to us to allow to question anything. But so far I have pretty much kept my questions to radiologist and surgeon. But if I had questions the advocate could not help I certainly would ask the appropriate doctor prior to surgery.
The recommended treatment for me was lumpectomy or partial (as your doctor described) and for me internal radiation. But for some reason an MRI was not ordered until after the surgeon laid out the suggested plan of attack and my MRI found another spot. I will have the biopsy for the second spot. And like you the MRI, the ultrasound and the mammogram did not agree there was something there. And I am aware that MRI's have a percentage of false negatives.
I can only speak for me on this. I would rather have the biopsy, just to give me that added knowledge. And so I have my biopsy scheduled this Wed. For me, its that thought if you are going to have surgery, then lets get it in one surgery if possible.
I'm very new to all of this also but feel very certain that breast cancer treatment has changed quit a bit since your aunt in 1992 had it. We have more preventive measures, the cancers have been better identified and treatment along with medications have improved.
With that said, certainly family history should be considered and I would be sure to share that concern with your surgeon.
Hopefully, others with more experience will post and give you their experience. I am still learning myself.
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~Gardennerd~
It's all good.
I wanted/needed it stretched out a bit because I was terrified and needed time to process it all. I'm glad I was able to have the holidays. It wasn't all rosy because I had to find a way to tell my brother & sister what was going on. The hardest was telling my son.
After the second biopsy & diagnosis, things moved fast. There were labs, x-rays, scans and consults. I also had to prepare my manager & co-workers for a lengthy absence. I was exhausted by surgery day and just kind of moved in a fog. All that was 15 months ago, and, while I still think about the cancer and my poor breast, I am grateful it was caught early and went relatively smoothly. I had some not so great days after surgery and during radiation, but for the most part I came through it all quite well. I have been on hormone therapy for 9 months. I just started having SEs [joint(fingers & knees) and muscle(right arm) pain, and brittle fingernails] about 4 months ago. My MO has me on supplements and sees me every three months. I try not to complain too much, but I do let him know when I hurt and he listens, so it's all manageable for now.
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Susie, the reason they mentioned bilateral mastectomy was in the event your genetic tests had come back positive for one of the known breast cancer mutations—especially the BRCA 1 & 2 ones, which not only raise the chance of breast cancer (or, if already diagnosed, an ipsilateral or contralateral—i.e., same or other breast—recurrence) to as much as 50% but also the chance that cancer would be more aggressive. It had nothing to do with its effectiveness vs. breast conservation surgery without those genetic mutations. Fortunately, you tested negative for those mutations, as did I. As to family history, your aunt was a second-degree relative, which is a lower risk than a first-degree relative (mother or sibling). Was she an aunt by blood or marriage? Even if by marriage, you should know that 85% of all breast cancer patients had NO prior family history, of whatever-degree relative. (Yup, me again).
One more thing about that “peace of mind:” if it’s metastases about which you’re worried, the extent of surgery (lumpectomy vs. mastectomy vs. bilateral mastectomy) is much less of a factor than the effectiveness of the indicated systemic adjuvant therapy (chemo, endocrine, targeted or some combination thereof). The micromets were probably beyond the lymph nodes even before initial surgery.
Make no mistake: if I do get a new tumor or a recurrence for which mastectomy is recommended, I would go ahead and have one, with a more modest reconstruction—and if it’s ipsilateral, have the other one reduced by as similar a degree as possible.
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susie_2017 I had my lumpectomy on 4/25 with a SNB. I was able to shower 24 hrs after my surgery and haven't been in too much pain. I only took pain pills when I got home and the following day. Now I'm just taking tylenol and ibuprofen. Finding a comfortable, soft, supportive bra is key. I ended up putting on an old sports bra today and had my husband cut the side a bit so that it didn't rub on my SNB incision. I met my RO before surgery and I'm scheduled to see her again 2 weeks after my surgery. I wont actually be starting radiation until end of May. This community has been a lifesaver. Good luck on your surgery!!
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I ordered the Leading Lady leisure bras in size 40F/G/H, knowing that even though the band was one size too big, the cups would work. And since I wasn’t planning on wearing them out of the house, I didn’t care whether they’d give me a nice profile. If you look up Leading Lady nursing bra, you’ll find it’s the same thing, only offered in more colors (I even have it in leopard print). Eventually, when my breast seroma swelled during radiation, I went up to a 42 band. I’m back in the 40s again. They’re pretty cheap, too.
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I'm chiming in here. I only put a bra on when I had to go out (to Dr mostly), other than that I was bra-less around the house. I was able to take a long medical leave, so I didn't have to worry about going to work after surgery and during radiation.
Bathing was 48 hrs. after surgery.
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ChiSandy, I thought I'd answer your questions on this page because I'm here more often than on the other page. The knee replacement has gone about according to plan. I let my pain medicine get ahead of me today because I felt so good and now I'm in a whole lot of pain. Oxycodone has not been a good friend to me. It makes me so sick. So I started just using IV Toradol which is an NSAID. It worked great yesterday and through the night but not working now. So I finally broke down and took the oxycodone and some zofran, so I'll probably be down the rest of the day.
The on call doctor came to see me. He does not seem to understand the situation. He's talking about me going home this afternoon. Haha. I got far as my hospital room door, got weak and shock-y, and had to be dragged back yo bed in a nearby chair. I reminded him that I have 11 steps to get up to my house and five more steps to get up to all my bathrooms. I HAVE to have steps under my belt before I leave this Hospital. I know it will come, but it won't come today. At any rate I'm not going home. I explained to the doctor that my goals today are to walk in the hall and find a pain treatment regimen that works well enough for me to be able to get out of the bed and do the PT. He offered to put me on tramadol and hydrocodone, which of he had bothered to read my chart he would know I have had severe reactions to both. I'm just really sensitive to narcotic medication, which is why I thought the Toradol would be such a grand plan
I did ask my surgeon about two weeks ago about rehab. He seemed to think that I would not need to go to a rehab facility. His plan is for me to leave from the hospital after I can master stairs and have in-home PT for 2 to 3 weeks, after which I will have PT at an out-patient facility for probably a couple of months..
So, here I sit thoroughly put out with myself and in a whole lot of pain. Foo
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Poodles, Damn. I'm glad the surgery went well but that's rotten you can't find anything oral for your pain that doesn't do you in. Where is that doctor's brain thinking you're ready to go home? What part of STEPS doesn't he get? Idiot. It's too bad the surgeon doesn't feel in-facility rehab is necessary - it sounds like it would be a good option for you. I hope you get it all sorted out.
HUGS!
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Hugs Poodles. I have trouble with narcotics too but have always been able to handle percocet. My dad was the same way. Are you getting IV Torodal?
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I was relying on Toredol since yesterday, but today I let the pain get away from me and now I'm really suffering. Though the oxycodone, plus 1000mg of Tylenol (generic Percocet ) has brought the pain from "a bear is chewing my leg off while I play the violin" to merely"hold my coke while I writhe for a couple minutes."
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i do find it interesting that my brother called me from the Outer Banks last evening and offered to drive 9-hrs through the night to come take care of me and DH. Considering that he is about as nurturing as a Billy goat, I found it touching. Two of my sisters and my mother have contacted me, all of whom live 450-2500 miles away. Yet my two adult children who live right here in Atlanta have not called me at all. I guess they're waiting for me to be discharged.
As usual, my Sunday School class has kicked in to drive and has offered to prepare meals. DH is real sick with a lung infection, so I'm worried about him. He has stage 4 lung & heart disease. There is enough food in the freezer for at least a week. I think I'm going to call in a housekeeper to take over the basic cleaning at least every 2 weeks, since DH cannot handle that stuff.
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ChiSandy, my aunt was my mothers sister. She had it twice once in 1992 and again in 2002 when she died. Thanks for all the replies to my comment. I would of liked to have the left breast biopsied before surgery as well to make it a "one and done deal" but there is no guarantee a MRI will be able to locate the 3 areas since the US was unable to. I guess we'll just cross that bridge when we get there. I was a little surprised to see one of you were unable to get a MRI because of metal in your knee. I have metal in my right wrist( a plate from an ice skating accident) and I was told as long as the metal wasn't some place such as a stent in a heart the only risk I was taking was the plate moving. The risk of that versus the benefits of the procedure were less so MRI can be done. Thanks for all the input, I will stock up on sports bras but go without at home. Are there certain vitamins I should be taking? What about lotions on the breast for radiation? Should I stock up? I'm finding mixed answers to my search but if I have radiation now and ten years down the road the cancer returns can I have implants? I do not have a patient advocate, how do I get one? Off for a bike ride and to enjoy this nice weather! Hope all of you are taking in the sun!
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Poodles, this is the time to call in every favor you’ve amassed and accept all the help available to you. What part of ELEVEN stairsteps to your house does your surgeon not understand? As long as you’re on an IV, you have to remain in the hospital. And one thing you MUST do is stay ahead of the pain: it is much easier to keep your pain at a level of 3 or 4 than to bring it down from 6 or higher (on the 0-10 scale). In hospital I was on a PCA pump of morphine until I was discharged (and the first day after surgery, a lidocaine drip directly to the surgical site); then on 10mg. of Opana (long-acting hydromorphone) BID until discharge from rehab, then 5 days of one a day before d.c.ing it. I was also on 2x Norco 10/325 q.4-6 hrs, tapering to q. 6 hr., then weaning off gradually once discharged to home (dose eventually reduced to 7.5s, then 5s, then a single pill at ever longer intervals. On Tramadol and Neurontin until I’d been home for a week—the Tramadol and then the Neurontin were tapered to zero for the next week.
There is no dishonor in relying on whatever pain meds you need. (Plus as many prunes & Colace as it takes to keep you “on the move”). You will not become an addict if you legitimately need these drugs, which I can fully attest you DO.
At rehab we spent the first 3 days of PT on range of motion (flexion & extension—NOT fun) plus walking, first with a walker & then a cane (regular, not 4-point). Crutches were unnecessary, and inadvisable for anyone at risk of LE anyway. Stair work began on Day 4, then outdoor walking (eventually up to 1/4 mi. ea. way) towards the end of week 2. Discharged to home after the sutures were out (Day 10 the first time, in the shitty rehab center, Day 14 in the “hotel with drugs”). Then a visiting nurse to draw INRs and give a Lovenox shot every other day for 2 weeks (was on warfarin for 4 weeks), and a visiting PT every other day for 2 weeks the first time and 3 weeks the second. After that, I went to outpatient PT 3x/wk. (First time, the clinic sent a van for me, with a stepstool to get in except when I got to ride shotgun; second time, I was able to drive since it was my L knee).
Ice and elevation! They should send you home with some sort of ice-circulating machine that pumps icewater to & from a pad wrapped around your knee. (Polar-something-or-other). Frozen peas. Homemade slush pack recipe (50/50 isopropyl alc. & water, double-or-triple Ziploc bags and frozen till a gel). And get a special wedge to keep your leg fully supported (pillows don’t cut it) and straight as you elevate, as close to “toes above nose” as you can get, or at least higher than your heart. You’ll know it’s time to elevate again when your toes start to look like short chubby cocktail franks.
Hoping your DH’s lung infection can clear up. If you can’t go to rehab, perhaps stay with someone (or in a suite motel) where everything is on one level, with no stairs to get inside (ramp is okay). Can you rent a portable ramp for the front of your house?
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~susie~
I was taken off all my vitamins and supplements and cholesterol med three weeks before my surgery. I was only allowed to take my BP and thyroid meds. During radiation I was allowed to take everything except cholesterol meds, & fish oil. Hormone therapy: I am back on all meds, vitamins and supplements (plus a few added by MO). I would talk to your surgeon and oncologist(s) about vitamins, etc.
I was told to apply Aquaphor to my breast to keep it moist after the second treatment. The RO's nurse gave me a couple of samples and I bought the 14 oz. jar at a local drug store. It has lasted me a long time. I am still using the original jar (not for my breast anymore, but it works great softening heels!). I applied it every day (whole breast) right after treatment and again each night. I showered it off every morning because you can't have anything on the breast during rads.
I had a patient advocate, but she wasn't helpful. She was impatient and sarcastic, not great in the people-skills department. I talked to the nurses or the doctors when I needed information or advice.
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Poodles, that is rather shocking about your brother offering to come and help. I agree with Sandy - take any help offered and ask for it if you need it! I'm sorry DH is sick. That is very worrisome. Please take care and I hope you go to rehab rather than home though It is always nicer to be home.
HUGS!
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We shall see how tomorrow goes. I finally got the pain down to 5/10, but it quickly shot back up to 6/10 when I walked 120ft. I have finished weak and diaphoretic after both attempts at walking. I've been so swiped out by pain today that I couldn't even tolerate a short bathe-up at the sink. I barely got me teeth brushed! I do have this crazy cool ice water circulating machine that does me a world of good when I'm in bed. I am determined to stay on top of the pain meds tonight and tomorrow morning. Tomorow its do or die, on the step climbing.
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Hi Susie welcome to this forum the girls are amazing and they know alot. My experience is this. I am 46 i had lumpectomy with Sentinel biopsy. I felt good with 1 tylenol extra strength and 1 advil too. I took 4 days off and after that i went back to work. The next week i had a seroma so it was very uncomfortable, the doctor said it will be absorb by the body in one month. So i went back working like normal the next following weeks, i don't take nothing since 2 weeks and the seroma is getting better i feel pretty much normal. Next week i have the 2 appointments one with the Radiation Dr. And the other with the Oncologist to see which treatment is for me. I decided that whatever is that treatment Radiation or Chemo i will continue working taking 3 days off every 3 weeks if it is chemo. My work will keep me busy, distracted and less depressed. I wish the treatment would be Radiation instead of chemo but the girls said that depens on the oncotype test, i hope they do it and with that i would know for sure what is the best treatment for me. I hope this helps you with your becoming surgery.
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Poodles, you now need to be your own advocate as a patient, because as a nurse yourself, you know that they are too busy to anticipate your needs. Make use of that call button. The better you can manage your pain, the more you can work to recover.
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hey ladies.... is there any info on best fillers to use in your bra after your treatments leave you with one much smaller boob? There are so many out there. I am betting one of the topics on here covers that, but I haven't found it.
I finally get to stuff my bra. But I don't know how! Assuming it should be something under my breast to push it up?
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Poodles, Glad your surgery went well... when I had my knees done, they wouldn't let me go home alone, I moved in with my brother and nephew and had PT at home at first, They made sure I could walk and get in and out of bed and did steps too.. you're in my prayers... healing is the hardest and codiene.. I was allergic, had to take benedryl to stop the itching..
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Robin, I got some really lightweight foam inserts at a lingerie shop. I'm under-endowed so they can help fill me out. They were no silicone - I've had those and they are heavy and sticky if you get warm. I think you probably can get them everywhere. I can't find mine - maybe they didn't make the move to Spokane or I've hidden them so can't tell you the brand.
HUGS!
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Susie 2017, before my lumpectomy I had an MRI which showed that my cancer was multi focal - it showed five spots. Only one spot had appeared in the ultrasound. The type of bc I have is invasive lobular and it's a lot harder to see. To mark the area for the surgeon, the techs used the stereodactic mammogram to triangulate and inserted metal markers.if that hadn't worked it would have meant using a MRI to guide the process.
I imagine the metal in your wrist is titanium and that's why it was OK to have the MRI. I have a metal plate and several screws in my leg. They are made out of titanium.
Best of luck with your surgery.
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Poodles ...glad your surgery went well. I can't take any good pain meds either ...Percocet was the only thing I could take when my radiated boob burnt and split in my armpit area. Hope they get that under control for you.
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So with my TE in I complained about what looked like might be cording but the PT said was just from the TE pressing under my arm. Well now that I have my squishies in I can tell you for certain that I have cording on my left (cancer side) breast. Who do I see about that?
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Molly, that's a bummer. Is your PT an LE specialist? If not, then that's who you need to see I'd think. But I truly don't know. Good luck. BTW, do you like your squishies?
HUGS!
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Peggy, my PT (I haven't seen her in over a year) was not an LE specialist. I need to see one because I am traveling by plane in June and don't have a sleeve. The cording is really in my breast and partially in my axilla. I am growing to like my squishies. I have a lot of scars on the right that I hope fade well and my left is still weirdly shaped due to radiation and having a TE for 1.5 years. They are softening up so that's good.
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~Robin~
I wear a breast form that I got free from www.awesomebreastforms.org
They are either knitted or crocheted. If you are interested, go to the web site and find the link to the order form. They will do regular and swim forms. It takes a few weeks for them to come in because they are all hand made. This is mine. It's very plain, but they can do all colors.
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