Lumpectomy Lounge....let's talk!
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I did things a bit different, I was going to be referred to a general surgeon so I requested to see an oncologist first at a cancer center. That got me into the center so he referred me the surgical oncologist . I didn't want to settle for whoever my insurance sent me to.
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I found my BS through my PCP. And when I told the breast center (NOT the cancer center I went to), they said she was the best. The BS then gave me several names for the MO and RO and I went with the ones she recommended - all at the cancer center. I never felt I was settling. My BS is a true breast surgeon. And she's great.
HUGS!
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I found my BS through the Breast Center. He came very highly recommended. His specialty is actually Gynecologic Oncology so he actually also removed my ovaries and tubes in May. My MO was recommended by his office. Both of their offices are in the Cancer Center along with the RO office. It makes it really convenient and I have been very happy with my care.
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When I first found the lump, I went to my primary care doc, a GP. It was also my first visit to her, as I had just changed insurance plans in January and the prior GP wasn't covered under my new plan (I had switched because I needed specialty care for an unrelated vision problem, and I was tired of fighting with the insurance company for the referrals; the new insurance was much more flexible albeit more expensive.) In any case, the new GP is the wife of a long time co-worker of mine who I hold in high regard, so while I'd never met her, I felt that I knew her and was comfortable with her.
GP turned out to be a real blessing, because she urged me to go to the bigger town 60 miles from home for the diagnostic mammogram, rather than having it done at the imaging facility in our small town, as she has been having a string of false negatives from the local mammo facility and was not happy about it. The radiologist who called me with the bad news after mammo, ultrasound and biopsy was the one who recommended my breast surgeon, also in the larger town. Went with his referral and I absolutely LOVE the BS (and it was clear at the hospital where I had the Lx that she was highly regarded). BS also referred me to the RO, who we have already met and like, and the MO. First apt with MO isn't until Monday so hopefully that first meeting will go well also, but since BS recommended MO, and RO also lit up and smiled when I told him which MO we were were seeing, it looks like a good choice too, at least in theory. We shall see.
Staying in my small town for surgery and for MO was never an option I was willing to consider. (Fortunately, RO just expanded his practice by purchasing a million dollar radiation machine for an office in my home town, two miles from my house, so when it comes time for the daily radiation I won't have to drive sixty miles for treatment! yay: I was prepared to do that but it would have been a drag) The one hospital in my small town does NOT have a good reputation and in fact we'd had a very bad experience in the ER there when hubby was quite ill a few years ago. With the insurance I have, I did have the option to go to a large and very well known (as in globally ranked and top NCI funded) University teaching hospital...but it is three hours drive away and I just didn't want to make that type of a drive if I didn't have to do so. We had gone the University hospital route for my vision issues, but that was after seeing a number of opthalmalagists closer to home who all shrugged and said that clearly something was wrong but couldn't give me a diagnosis. (That is the type of situation where I think a top research facility really shines. and yes, University hospital did eventually give me a diagnosis after every test you could think of, although as it turned out that my partial blindness in one eye is permanent and can't be treated or cured. However, it isn't at all life threatening and won't get worse either..nothing like cancer to put other health issues in perspective.)
But I digress (again. I am prone to that). I am so happy that we chose the intermediate bigger but not big city for oncologist and surgery, mostly because of the excellent experiences with both my bs and with the hospital, and I feel like I just lucked out getting the right referrals. Hope I continue to feel that way once I start the rest of my treatment! Being informed during the process is important, and sometimes it helps to also go with the flow...
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Good morning!
I received a tip today from my radiation techs that I wish I had thought of myself! I am swelling under my breast, and my bra bands are tight. When I mentioned it they sad "go buy bra extenders!"
Excellent suggestion! 14/33 rads down, so glad to get this advice!
~Midgie
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Octogirl--I just wanted to respond to your comments about exercise and overdoing it. After my surgery I did nothing for 5 days. I just moved from the bed to the couch and back to the bed again. Then I started going out for short, slow walks and gradually increased the length each day. I did the easy exercises the nurse navigator gave to me but I did nothing around the house for 2 weeks. My husband did all of the cooking, dishes, laundry and cleaning. I felt guilty about it but I also didn't want to do anything to impede healing. I agree that it is important to listen to your own body and that no one should tell you to do more. I would be happy to hold you to your promise to take it easy until you are able to do more!
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thanks for the encouragement not to do too much, sailorbev! I think it is wise advice, and I am following your approach this week. I did walk again this am, a bit less than half a mile, and it does feel good, but I have promised myself NOT to do dishes, cook or laundry and to rest the rest of the day. If hubby doesn't feel like cooking tonight he can get us some take out! :-)
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How many of you went back to work soon after surgery? My BS told me some of her patients go back the following Monday but I am looking at 12 days post op for part-time and work my way up to full-time.
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Molly, I didn't go back to work since I'm retired. HOWEVER, I went back to fulltime caring for DH who has Parkinson's, needs help getting up out of a chair, going to the bathroom, getting in and out of bed, getting dressed. And he weighed about 200 lbs at the time. That was work. And it was stressful. The two week break I had recovering from my surgery was my first break in four years. AND the first uninterrupted sleep in at least that long. He's now in a nursing home.
I think you're wise to take off as much time as you can. Remember to not use your left arm for any lifting (that seems to be the rule forever BTW). Keep in mind that your body needs rest while it heals. And that doesn't happen in 2 weeks. Especially, do as little as possible your first week. Take walks if you feel like it. Don't cook. Read, sun, laze around and pamper yourself. You'll do just fine!
HUGS!!!
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Thank you, Peggy. I did mention to my DH that my lifting limits will be forever and I don't think I should help lift our DS anymore. I know that puts a lot of pressure on him but we may need to resurrect the Hoyer lift (which we all hate) so DH doesn't hurt his already injured back.
I will be sure to use the first week to do nothing but some walking.
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How will wire placement be? I'm going in tomorrow and am a bit nervous about this. They told me I will get a shot of lidocaine to numb the breast and they will give me Valium if I want it. I didn't feel s thing with the breast biopsy and didn't take Valium for it either. Will this be worse? The same? I will be sitting in a chair they told me but my arm may get sore from holding it up. They are very focused on pain management at the hospital.
Thank you! This time tomorrow I should be back home and resting and this part behind me
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CAMommy, definitely take the valium! If done properly it shouldn't be difficult at all. I had had a bad one done about 12-15 years ago. This one for my BC was much better. Lots of lidocaine and nothing hurts! With valium, you may not care. When are you having surgery? Tomorrow also? Whenever they offer you something, take it. They know what they are doing. I took the valium and the dramamine and I wasn't nauseous from the anesthetic. Also took the super-duper pain pill in recovery though I didn't need it. But it was comforting. Took Tylenol after that and not much of it. But each of us is different. Make sure you fill the pain pill prescription. Your pain should be controlled. You'll heal better.
Take care and good luck!!
HUGS!
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Welcome Lhary! The women in this Lounge are very wise and hopefully you feel more empowered from their suggestions. There is strength in knowledge, and wisdom from confidence, and peace from listening to our instincts knowing that we've made the best possible decision at the time, under the circumstances. It's all we can ask of ourselves.
Pontiac and Octo: regarding being a caregiver, it is similar to being given the cancer diagnosis---a jolt that no one told us what to do. Sometimes I think it is "worse" because there can be more intense feelings of guilt. At least that is true for me. You probably know what I'm talking about with the wide range of emotions and conflicts. What we are "suppose" to do, and "behave", and what our instincts tell us to do in order to preserve some little bit of self-care and sanity. I have yet to tell my 92 y/o demented mother that I have BC, although she has many moments of lucidity. Will she remember? Or will she forget and then will I have to repeatedly remind her? Will she feel bad and then helpless and then angry because I "put her" in assisted living and therefore cannot do anything to help me? For that matter, I have not yet told my 92 y/o slightly demented father who is blind from glaucoma and has renal dialysis 3x/week or my 70-something stepmother who cares for him despite her stage III BC and 2nd round of chemo. I know that some of my reasoning is because I am afraid, and maybe selfish, but it's been 20 days since my diagnosis and I'm still processing things. Anyhow, have you read The 36-Hour Day, A family guide to caring for people who have alzheimer's disease, Related dementias, and memory loss by Mace and Rabins? It's a good book and while your DH no longer lives with you Pontiac, I still find it helpful to thumb through to remind myself all the reasons why my mom no longer lives with us.
Molly, I was told my BS to take a week off from driving and no lifting over 10 lbs; she said I could return to work when I felt like it (I sit in a chair all day). My surgery was almost 2 hrs long. However I took off a week and will return to work tomorrow. I just returned from a 4-day trip to my son's state championship swim meet. It was exhausting (as most swim meets can be), sitting in the bleachers for hours and going back and forth to the hotel, but I survived. The hardest part was a weird muscular/skeletal pain in my back that may or may not be connected to my surgery. Anyhow, I am flying to to Purdue University on thurs with my son for a major swim meet. Yup, I'm smart like that
.For those of you moms with younger kids and teens, I just received a booklet from the National Cancer Institute: When Your Parent Has Cancer, A Guide for Teens. I just called and asked for it. It was free and I highly recommend it.
An update on my biomarkers: I heard from a friend who's on the inside of the hospital that my report came back today as er+/pr+ but Her2 equivocal. I have not heard from any of my docs and have not read the report to see if the equivocal result was followed up by CISH or FISH to force reflex testing with alternative testing platforms. I believe my er/pr were strongly positive. On a side note, I was on a very low dose (0.05mg) of an estrogen patch, along with a low-progesterone-releasing IUD to oppose the estrogen. I stopped the patch after the dx, and the BS and MO both said the IUD is localized so not a worry but I want that darn thing out of me. No one knows if I am post-menopausal as my estrodiol test and FSH were taken during my first appt when I still had the patch on, so the results were suggestive of non-menopause.
Assuming that they treat me as Her2 + as well, what are the likely hormone-suppressing options?
Thanks all!
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Molly I had my surgery in a Monday and went back on a Friday. It was way to soon and if I had it to do over again I would have waited til later the following week.
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Molly50, my surgery was July 16th and my first day back at work will be August 4th...so over two weeks. I would have made it August 3rd but that day is an apt with MO, and since MO is a sixty mile drive from me and told me to expect to be there a while since it was my first visit....I figured out might as well make that a sick day. After the doc apt if I feel up to it I can take advantage of being in the 'big' city to do a big of shopping. or not....
Since I've been getting bored, and was peeking at work email anyway, I asked my bs at my seven day post op visit last week what she thought about going back to work today...and she adamantly told me not to do it if I had the sick leave to stay out another week (which fortunately, I do). She said her concern wasn't so much the actual work work, since I have a desk job and mostly work seated at a computer, is was more that I'd be tempted to do too much and in my rush to get ready might forget about lifting restrictions, importance of resting and taking it slow, etc. Today I realize the total wisdom of her approach: I haven't yet done anything except play on the computer, take a short walk, read and nap. If I had been at work I would have already had to shower, find the right clothes to wear, comb my hair, drive to work, find parking, open and shut car door several times, sit at a desk instead of having option to nap when tired......move around stuff on my desk, and it is only noon here! you get the picture.....
I think the nothing but walking the first week is really a good plan.
By the way, I went on the books thread of this board and got some excellent suggestions for new reads, downloaded a few on my kindle, and wasn't bored all morning. The right book to read can make a HUGE difference.
Take it easy, all of us!
Octo
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Molly, DH has two things going on: Parkinson's - so gait and memory issues; a heart attack that messed with his short term memory. He isn't to the point of dementia but he does have very vivid dreams that are very real to him and he tells them to me as if he had done what he dreamed. I think what induces guilt the most when you place someone in nursing home care is the relief you feel at not having that responsibility anymore. Now you can sleep, do things or nothing. Once you get past that because you know you've made the right and best decision you feel much better.
I might be tempted to tell neither parent about your BC. I assume your step-mom knows. But that's my decision. Chuck was still living at home so he was told. There is not timetable for sharing that you have BC. Good grief, you have to absorb that awful fact yourself. It will get easier as time goes on but it is very scary at first, especially with all the decisions you have to make.
Nothing wrong with going to the swim meets. Just have the kids lug all the stuff around. Let them wait on you!
I don't know how the patch and IUD would influence your testing. Maybe someone else can speak to that. Sometimes tamoxifen (or AIs) are given as well as Herceptin for HER2 positive gals.
Let us know!
HUGS!
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Sweetmamaj, octogirl, Tresjolie2
thank you for encouraging me to just "be" the first week. It is tough to transition from do everything mom/grandma to do nothing but I will be a good patient.
Also, Sweetmamj my mass is Er+ 100% and PR+ 98% and Her2- At the time I was on .075 Vivelle dot and occasional Estrace vaginal cream. I stopped everything a week before I saw the MO (two weeks after diagnosis). I had my ovaries removed 3.5 years ago so I am in full surgical menopause.
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i was still on hormonal birth control when I got diagnosed. My doctor told me to stop them immediately. I wanted to explore an IUD but my MO just shook her head and said no way, the risk of infection is too great. I actually just made an appointment with my OB because apparently I can still get pregnant, but it would be,a disaster if I did, but I have no birth control options that I'm comfortable with. Frustrating for both dh and me...
Sweet mama if you are hormone positive you have to rid your body of estrogen. That can be done with tamoxifen or through ovarian suppression and an aromotase inhibitor. I don't know which I'm doing yet.
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Molly and Tresjoli, manythanks for your input! Molly I was on Vilelle (cut the strip in half to dose at 0.5 mg) but gyn also insisted on something to oppose the estrogen, hence the Murina iud x 5 yrs. since my BC dx, I discontinued the vivelle.
In 1990 I had one ovary removed, thanks to a (benign) ovarian tumor.
The pathologist emailed me and indicated the retesting for Her2 was ordered but results might take another week.
Tresjoli, was is the herceptin treatment like?
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Lharry, just also reaching out to say welcome to the "club", and sorry you too have joined. We're all here for you!
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I was really scared of the wire location but it was a lot quicker then I thought and no pain after first little poke to numb it up
Herceptin alone isn't that bad, drove myself drank some hot tea and chatted with the other ladies and nurses, every 3 weeks. Hardest part about herceptin for me were the heart checks/ muga scans and a very high copay!!!0 -
Thank you for the reassurance about the wire location. My Lx is on Wednesday.
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CAmommy: All standard disclaimers apply--there's a range of facilities, experiences, medical professionals, and so on.
But for what it's worth: I was completely flipped out about my wire insertion--the insertion was at facility A and the surgery was at facility B five miles away, and I had visions of having to be driven, topless with a ham radio aficionado's worth of AERIALS sticking out of my breast to the hospital. Think fever nightmares combined with the most ludicrous of Dr. Seuss's illustrations. But for me, it was only a little more involved/painful/upsetting than a mammogram, they taped down/over the wire insertion site and wished me a gruffly simple "Good luck, sorry things came to this!", i got dressed and on my way. (Your reactions will vary--don't be shy about asking for a Valium if you tend to work up a good head of nerves. Me, I tend to get worked up when the medical professionals are unduly comforting--is there something I'm missing?)
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I will refrain from sharing my wire story. Let's just say the doctor kept saying "I'm so sorry I'm so sorry I'm so sorry your breasts are just SOO dense." And I had to have three put in. Sigh...I have nightmares.
Herceptin is a breeze. Some people get a little flu like feeling or runny nose, but I have had no side effects from Herceptin that I know of. I'm not sure when I get another heart scan? I had one before I started. In general my regimen is very light. Some heartburn and bone pain but all manageable and I am working 4 days a week and taking care of two small kids. I had them all by myself today (no dh no nanny) and it's my hardest day of the week and I still pulled off the trampoline park and mcdonalds. I napped while my daughter napped and my son played wii. It can be done lol...
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CAmommy - I had the wire and lumpectomy last week. In my case, inserting the wires were much worse than my core biopsy. I cried elephant tears from the pain. If I had to do it again I would ask for more numbing for sure!
And just to update my situation, my doctor actually recommended a mastectomy. I was surprised he actually made a recommendation but oddly enough it has relieved me of much of my stress in weighing my options. It feels very strange to be okay with something so drastic. The good news with this though is no radiation or chemotherapy. He's recommending it because he has already removed a tumor that is 70mm and removing more margin plus lymph node and still leaving a 50/50 chance of having to go back in again would leave my breast extremely disfigured.
The gambit of emotions can be overwhelming for sure
Guess it's time for me to move over to a mastectomy board.
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Hugs, LHarry!
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Hi All - I have been absent from the boards for a couple of weeks now. I was in a really bad head space and was getting myself really worked up. I can't even remember what I posted last. Anyway - I had a LX on 6/26 followed by almost 2 weeks of insanity waiting on the results. The results came back with positive margins and my BS said we would do a re-excision and if that didn't work I'd have to have a mastectomy. Once I worked through all that news, my head got in a better place. I had my re-excision on 7/24 (last Friday). Thankfully, my mind is at peace and I'm not driving myself nuts waiting on the results this time. Unfortunately, this time I've developed a seroma and my boob sounds like a mini waterbed when I walk. It's just disturbing.
Molly . . . my first surgery was on a Friday and I returned to work on Wednesday for 4 hours, then 5 hours Thursday and 6 hours Friday. Other than Doctor appointments, I've been working my normal 8 hour schedule since. My re-excision was again on Friday and I was thinking of returning to work tomorrow but my DH and DD have convinced me to give it one more day. I'm a preschool/daycare director so my job isn't physically demanding but it can be mentally draining. I just paced myself and did what I could. When I was tired, I went home. My BS really down plays breast surgery. He gave me no lifting limitations or restrictions. He just said not to do anything excessive. (he doesn't know me - he should have given me restrictions) The Tuesday after my LX I tore up carpet in my hallway - there is more to that story - it was a necessity really. I felt sore afterward but then rested. I think the thing to remember is - everyone is different. You really can't compare yourself to anyone else. I think where your incision is makes a difference as well. From day one after both surgeries I was able to use my arm in full motion with no pain (my incision is at the top middle breast)
Octogirl . . . no matter what anyone says, you have to follow your body's lead. If your body says take it easy . . . take it easy! It sounds like you are trying to get/keep yourself moving and I think that's all you can do. I felt pretty bad this morning but a friend came and took me to lunch and we did a little shopping. I was worn out but when I got home and rested - I felt so much better!
LHarry . . . welcome to the group - I'm sorry I couldn't be any help before your surgery. I hope you are doing well with everything! Wrapping your head around all this new info is so challenging. Waiting on results has got to be the worst! I have had to forbid myself from researching information online! I was staying up late researching everything because I wanted to understand it all! I had to get to a place where I placed more trust in the expertise of my doctors to lead me in the right direction. Now I feel like I understand but I'm not driving myself crazy
For those of you who are Christian believers I highly recommend John Piper's "Don't Waste Your Cancer". It is a short pamphlet book. I got it on my Kindle for .99. It was a quick read but I constantly go back to it. It has given me a much different perspective and has helped me to get my mind(and research) in the right place.
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Curious - during your "waiting on results" times . . . what did you do to take your mind off of things? I have taken up painting and coloring. Now my painting is not good by any streatch! I am not an artist. I signed up for a couple of those "Paint Nites" and learned that I get really focused on the paint and what the brush does. I bought some canvas, cheap brushes and acrylic paint and when I'm having one of those "days" I just start painting. I can usually pass a couple of hours listening to music and focusing on the painting and realize I haven't thought about BC stuff at all. What works for you?
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I've read a couple of ladies say that after surgery the BS said everything looked good (clean margins, lymph nodes) but that the proof would be in the pathology report. Do the BS really have any idea or any way of knowing about the margins at the time or surgery? I was under the impression that the naked eye couldn't tell and it all was based on pathology. It would be hopeful to know that they have some idea at the time!
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Hello Ringelle; Right after surgery bs talked to hubby (I was still out of it at that point) and told him that she felt confident about the margins but that final results would need to wait for pathology report. He told me that his impression was that she was happy, and she has been at it for thirty years...but still we had to wait. However, we only had to wait 24 hours: she didn't wait until the post op visit (a week after), but called me the next day to tell me that the pathology report had come back and that there was no lymph node involvement and that margins were clean. And then gave me a copy of the pathology report at the 7 day post op. The only surprise was that I thought she said when she called that tumor was 1.8 cm, but in fact, it was 2.1 cm....which was what was also in the pathology report. So, one of us was confused in that initial post-op phone call, and most likely, given that I was still blurry from pain meds the day after surgery, it was me.
Some of the tests (oncotype, for example) take longer but while it is true that the bs has to wait for the path report to know if margins and lymph nodes are clean, it isn't necessarily a long wait. I suppose the length of time may depend on particular lab the bs uses, and I wouldn't be surprised if some docs just don't want to give news (good or bad) over the phone (possibly exactly because it is harder to know if patient understands the results when talking over the phone? Just speculating.). Was happy that mine did, however.
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