Lumpectomy Lounge....let's talk!
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MaggieCat and Nash54, good to know my "stabbing pains" are just par for the course, thanks! Guess they'll eventually go away.
Peggy, I'm glad you found the Warner's bra and find it comfortable. These days comfort is my most important consideration. Well, maybe not quite the most important, since if that were the case I'd probably just go braless all the time. But I was happy to discover that it's possible to get a good fit and still be comfortable, with no underwire. No one but me would even notice the difference, I suppose (between my minuscule "blissful lift" and flat chested, no-bra look), but I feel better with that little bit of help! Guess before I stuffed Kleenex in there, I might try one of those removable pads like the Genie bras have?
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KayFry, I have tons of those little Genie pads around and they might do the trick. I'll try them. Thanks for the idea. Guess I just need a whole lot of padding in the bottom of the bra to fill out the top. I'll figure it out
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Thank you ladies! I have another question... the lx area has been filled with fluid since the surgery, which I know is normal but tonight it seems like the fluid has increased and more of the area is numb. When or does this go away? When should I be concerned? Lx was two weeks ago today.
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I know right, so small. Hard to wrap my head around the fact that something so tiny can change your life so completely.
Yesterday I got the rundown of my surgery day, it's going to be a long one. 7:30 check-in and 8am injection at one hospital. 10am check in at the Women's Hospital. 11:30 am wire localization. 1pm surgery. I feel like there is going to be a lot of waiting around freaking out time in-between procedures!!!
I should get the results of the BRAC any day now, my BS is checking online everyday for them, just had the test Friday and she said 6 days usually. Hoping for the call today so I can stop worrying.
Need to start thinking about how to talk to the kids about this before the surgery, they are only 11 and 9. We haven't told them anything yet. My oldest turns 12 the day after the surgery. I don't think we'll be doing too much for his birthday.
Heading to Kohls now...bra shopping.
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Upstate, At the age of your kids and where your area is so small, why give more than the basic facts? Mom has an area in her breast that is not like the rest of the breast (stage 1) that needs to come out. The doctors found it very early (<1 CM) . The doctors will test it to be sure it is no where else and I will have to take medication for a while and have some treatment to get rid of the parts (cells) that the doctor can't see to be sure they don't spread later. If the older one asks about cancer, I love the way my BS described the grades of cells. Grade 1 they look like normal cells, just a little bit angry. Grade 2 really mad etc. This may be a good context for your kids that won't scare them. Thank you for your surgery day description. Sounds like what I am in for as well.0 -
UpStateBe...my daughter was 16 at time of my dx. I told her the night before my surgery that they found a small area of concern and I was having it removed. Told her I'd need her help over the weekend while I recovered. I did not say "cancer' until after the fact. Then I let my husband tell her after my surgery....he told her it was very small and that they got it all. I didn't share the details of my radiation (I had internal)....just that I was having it done. Fortunately, teenagers are pretty self-absorbed so we got thru all of it pretty smoothly. She still had her "scary " moments but they were short-lived. I think she took her queue from me. I stayed positive and kept our schedule normal. Luckily my treatment plan was very doable for me.
Best of luck. (((hugs)))
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I am not sure if this is the best place to post this but since I had a lumpectomy and had the oncotype DX test ran I thought maybe it would be ok. I just got my score. I called the doctor's office and asked so the nurse gave me the number but told me the doctor would call to discuss the test with me. I had a score of 18. I have looked it up and saw that it is the first score of intermediate recurrence. I do not know what he will say. I do not know what I feel. I have been able to forget it for a while and now I am just scared of the unknown. I have heard from one woman that had a score of 13 and did not do radiation. She did a lot of research before she made her decision. I don't know if a score of 18 is low enough to make that choice.I know there are risks involved with radiation but I don't know much about it. I am wondering if any of you found yourself in this position and what you decided to do. I am 63. Is radiation riskier at that age? Is there a better place to post this?
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SuzanneCarol, usually Oncotype scores are used to determine the advisability of chemo, not radiation. For most of us getting a lumpy, radiation is a given. Of course, you can always opt out, but most of us choose to get it. I'm 69 and had radiation, left side lumpy. My MO really thought I should have chemo with my score of 13. None of the rest of the board thought so, so I didn't have chemo. Does this help? HUGS!!!!
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There is another oncotype test given for DCIS. I believe it is called the oncotype DX. It is to determine if a paatient with pure DCIS should have radiation or the oral meds.
Here is one article
Oncotype DX DCIS Score Predicts Recurrence Risk for Women with DCIS
A DCIS Score generated by the Oncotype DX breast cancer test provides information about how likely it is that breast ductal carcinoma in situ (DCIS) will recur. This may help guide decisions about whether women with DCIS need radiation therapy after breast-conserving surgery. These results were presented at the 2011 CTRC-AACR San Antonio Breast Cancer Symposium.
Ductal carcinoma in situ refers to a condition in which abnormal cells are found within a breast duct but have not spread outside of the duct to other tissues in the breast. It is most commonly detected by screening mammography. If not treated, some cases of DCIS may progress to invasive breast cancer.
Treatment for DCIS may involve breast-conserving surgery (lumpectomy) or mastectomy. For DCIS patients who choose breast-conserving surgery, additional treatment with radiation therapy has been shown to reduce the risk of recurrence, but may not be necessary for all women. If the characteristics of the DCIS suggest that it is unlikely to recur, surgery alone (without radiation therapy) may be an option.
The Oncotype DX breast cancer test was originally developed to provide information about recurrence risk and need for chemotherapy to certain groups of women with early-stage, invasive breast cancer. The test has been added to US medical guidelines for this purpose.
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SuzanneCarol, that IS the full name of the test. Here is a quick blurb about it Oncotype DX from the company.
Here is the link to the information here on BreastCancer.org BCO OncotypeDX
I hope these clarify what the test actually covers. HUGS!
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Yes, I have read that article. This is one of the paragraphs from the link you sent me, a bit further down. I have discovered many women are not familiar with this yet. My BS is the one that told me about it. I have talked to a few women on here that do know about the oncotype test for DCIS. At my lasst visit with BS he said this test would determine whether or not I will have radiation and/or the oral pill.
DCIS is the most common form of non-invasive breast cancer. DCIS usually is treated by surgically removing the cancer (lumpectomy in most cases). After surgery, hormonal therapy may be recommended if the DCIS is hormone-receptor-positive. Radiation therapy may be recommended for some women. Doctors aren't always sure which women will benefit from radiation therapy.
If you've been diagnosed with DCIS, the Oncotype DX test can help you and your doctor make a more informed decision about whether or not you need radiation therapy.
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I hope that you will not need radiation and/or tamoxifen or an AI. That would be wonderful. But it isn't the end of the world if you need either one or both. When do you meet with your BS or MO? MORE HUGS!!!
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thank you Peggy. He is supposed to call me this afternoon. I don't know yet if he will discuss it over the phone or make me come in. Phone is fine with me. I keep hearing there are complications with radiation. Sometimes I think it causes more problems to read too much as I don;t know what to believe.
right now I just want to go eat a whole pan of something, brownies?? I know that is not good!!
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Suzanne, I can only tell you my experience with radiation. It was a snap. Had a teeny bit of redness and some fatigue. Period. Some women have more skin issues but not everyone. My RO told me that most of his patients do not experience problems or they are very mild and NOT to expect SEs. One thing that we all keep reminding our new members is that most women do not have SEs from any of the treatments. Those that do tend to post here most often - quite understandable since they want help with the problems they are experiencing. Go into any treatments you are prescribed with a positive attitude. I think that helps. It won't prevent SEs but it will help you cope if you do have SEs.
You have to believe in what your oncologist says. Ask tons of questions. And get answers. Keep asking until you completely understand what he is telling you and prescribing for you (if anything). Keep us posted.
HUGS!!!
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Hi, had a lumpectomy today for a 1.3 cm palpable IDC. This is my first time posting biut I've read a lot if this thread. I thank you all as I've found it very comforting and helped me know what to expect.
UpstateBee, I dreaded telling my kids after my diagnosis but my kids are older with my youngest just turning 17. I also emphasized the positive. I think kids are naturally optimistic and want to help.
My MO also told me to expect very few SEs with radiation with the most common one some fatigue
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Suzannecarol, I am 64 and was 64 at the time of my Dx last December. I had lumpectomy in mid-January, and the pathology confirmed it was pure DCIS. My BS is head of breast surgery at Johns Hopkins, and I have a lot of confidence in him. He seemed to play it pretty conservative, and I'm not sure if that is partly just based on hunches from his own experience, or what. But he did not feel I needed a sentinel node biopsy, and did not feel there was any need to get the Oncotype test either. The tissue removed at my surgery was more extensive than yours; after my original core biopsy, I was told the involved area was about 1 cm, but the Hopkins radiologists saw something and ordered another diagnostic mammogram, and that showed a second area near the first, so total tissue removed wound up being 2.4 cm. Even so, there was no invasive cancer found after surgery, which kind of vindicated my surgeon's instincts, I think. You have not posted the grade of your tumor, but mine was originally read as grade 3, the most malignant or abnormal (though downgraded later by the Hopkins pathologists to grade 2). Although I very much wanted to avoid radiation, it was on the basis of the grade 3 and associated necrosis that I knew, in my heart, I really needed to do the radiation. It reduces the risk of recurrence by as much as 50 or 60%, and if you do get a recurrence, half of those will recur as invasive cancers. I was strongly advised to do radiation by all of my doctors (both my original doctors locally and my Hopkins team.)
I would say my own experience with rads was about in the middle of the spectrum, from what I've heard here. I was able to do the hypo-fractionated protocol, so I had 19 total treatments, the last 4 of them boosts. It played out over most of the month of March. I had virtually no side effects for the first couple of weeks (other than the disruption of my life of having to drive about an hour and a half roundtrip 5 days a week, plus treatment time). When I did develop side effects, they were pretty mild or moderate. I got a little pink, and then more pink, in the treatment area, and developed a very itchy rash in a fairly localized area over my breastbone, which I was told is very common. Also more irritation under my breast, but my tumor was at 6 o'clock so that was probably kind of ground zero. The itchiness was really the worst, but OTC hydrocortisone cream helped. I used the recommended moisturizer frequently every day, and that helped. I'm still using it, almost 3 weeks past my last Tx. The itchy rash finally went away, maybe a week and a half or two weeks after my last treatment, and the pink is fading. The boost area around my nipple was the last to start improving. It was tender and sore, but not that bothersome. Getting better every day now. I did develop some fatigue toward the end of Tx, and then caught some kind of bug a week after I finished, which did kind of wallop me, but now I'm starting to get my energy back, a little better every day. The red is fading to light pink, and the brown is fading to light tan
I believe any more serious SEs of rads are quite rare. I hear that one can get some shrinkage of the breast down the line, or some change in texture. I would say that so far I have more swelling than shrinkage. I will deal with however my boob winds up looking down the line with plastic surgery, or not deal with it, very possibly. But so far it's not that terrible. My RO showed me my treatment plan on the computer, and assured me that my heart was really not being touched at all. If you do rads, the things you need to be concerned about are heart exposure and rib exposure. Your RO will develop a treatment plan that really minimizes this exposure. I was told that any SEs to my lung would be inconsequential, but I think every case and every woman is different, and it depends on your particular situation. So I would advise you to ask a lot of questions! You'll be okay. Since you're ER+, it's more than likely you will be advised to do some kind of hormonal therapy after rads, or instead of rads. I was negative so it's not an issue for me. But that's a whole other decision you may need to consider. Like everything else, there are risks vs. benefits.0 -
Thank you Kay, I was a grade 1. I thought I put that on my profile. I will try to add that. Most days I am fine. It is all still so new that some days I just sit in disbelief.
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SuzanneCarol, I think most of us are pretty stunned and in shock after our Dx and Lx or Mx. Hard to wrap your mind around it. We totally understand! HUGS!
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Suzannecarol, I totally get that. It does feel very surreal to me, too, though I've kind of gotten used to it in the 4 months since this shock came into my life. I found out it's not the end of the world, but it does change you. Well, pure DCIS, less than 1 cm, no nodes, and grade 1 is about the best bad news you can get. With your diagnosis, it's not crazy to weigh the risks vs. benefits of rads. It's very controversial when your diagnosis is in that area. They really don't know the answer: will your DCIS ever progress to anything more serious? No one knows. There is the VanNuys prognostication scale that not everyone agrees with, but I think you fit most of the criteria for possibly not doing rads. Those include the size and grade of your DCIS, and your age at Dx, which for once is better if you're older. Not crazy to discuss this with your team.
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Thank you Peggy and Kay, I was a little stressed this afternoon. I had read about DCIS and I guess that is why I thought my score would be low, very low so when it was an 18, the first number of the intermediate group I did not know what to think. Still don't. Doctor did not call. We stayed home from eating out with some friends as I did not want to get the call during our time with them. I have questions and I want time to be able to ask them. Thanks a lot. You have helped me have a better weekend.
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SuzanneCarol, Just try to relax (huge glass of wine is a good start). I know it's hard to do. I tend to be rather fatalistic at times. All my worrying isn't go to change anything, so why waste all that energy and feeling lousy when it doesn't help? Usually that works for me. Plus I stay positive most of the time.
Bummer that your doctor didn't call. Like you, I wouldn't have wanted to discuss anything in public like that.
Take care!
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Suzanne, My Onco test score was an 18 also. I had to oncologists tell me that I didn't need chemo. I had a lumpectomy and had brachytherapy which is internal radiation. 5 days twice a day and I was done. Seems each place is different it what it does or recommends. Not knowing is the hardest and doctors not calling just makes me grrrrrr. Good luck and if you need anything just know we are all here for you. 0 -
A bit bummed tonight. I had a mammo two weeks ago- blood, boobs,. blood pressure and bones were all good.After the mammo I noticed the bad girl was hurting a lil, and I thought I was just still tender. I slept on her one night and thought wow that mammo must have bruised me internally or something as I am still sore. Last night it was more than sore so I did a breast exam and discovered where the cancer had been and the fat grafting was done I now have a lump. Its round and actually rounding out of my skin. I saw it and said What the HECK and told my husband LOOK AT THIS!!! So today back to the doctor I went. The past 8 appointment two weeks ago I guess wasn't enough, and my joy was short lived as now he is sending me for an ultrasound on Thur( 2 hours away) stay the night with my daughter and see the plastic surgeon on Friday who will either drain it or send me to have a biopsy. grrrrrrrrrr.....
My GP thinks it couple possibly be a cyst, since I just had a mammo, or even a hematoma. He said he can not rule out the mammo doing this. What the heck? grrrrrrr.... UFFF!! I think having my ovaries out and lack or horemones are not helping me at all dealing with this at this time!! I am soooo tired of doc appointments, I am gonna die and still owe the clinic!! GRRRR
Sorry for the vent. but just bummed!!
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hi my Oncotype was 19 and I chose to do radiation. They did tell me I could either do some chemo. Or rads. . A type where u don't lose hair or get nauseous. But left if up to me. The statistics were almost the same and mentally couldn't take the thought of chemo
I start next week with the rads
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ndgrrl, that just sucks, I'm sorry you're having to go through yet another round of doctors! Very odd that this would show up so soon after a clean bill of health from all the various docs! Will you be seeing the same plastic surgeon who did your fat grafting, and do you think it could have anything to do with that? Or, as mentioned, an actual injury from the last mammo?? Since it's painful, I would think it's probably not anything really scary, but of course you have to find out. Will be thinking about you.
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hang in there, ndgrrl. It is too bad you have to go through yet another thing. But at least they are able to get you in this week for both appts. so you won't have too long to wait to find out.
I know what you mean about having so many doctor appts. Between my oncology appts., my chronic pain issues, my gyno issues (ovarian cysts and fibroma, uterine fibroids, etc.) I feel like I practically live at the doctors office! Thursday I am scheduled for a chest/abdomen/pelvis CT scan.
We are here for you, so vent away!
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Dear kayfry,
Thank YOU so much for sharing yr experience with me.. I am so glad for yr that this part of yr ttreatment is/will be by this date?
My surgery went better than I thought thank you. My SO did a wonderful job. I cancelled my consent for axillary clearance just b4 I went under general anesthesia. She took out the tumor with margins (5cm) that came back clear, and 1 sentinel node (came back negative on Apr 2nd). Her colleague, who is an Onco-plastic surgeon (OPS) whom she brought in just to do my reconstructive surgery immedistely thereafter. She too did a beautiful job too. My right breast is healing quite nicely albeit slowly. it is only just slightly smaller than my left (36D versus 39D), and looked firmer too. But the location where the tumor was seemed hard to the touch. I was told to start massaging it every day so it will gradually become softer.
Do you need to do chemo too? MY i ask How much how long and what drugs?
My MO wanted me to do a 12 month chemo first to start next week but I declined. I opted to go with the FInHER 9 weeks combined therapy concurrent with docetaxel + herceptin instead. Though he was disappointed, he respected my wishes. I will start chemo On April 27th . Thereafter I will hv 6-8 weeks daily radiation, I think . I've bought emu oil to apply when the time comes. I heard it stops the sunburning sensation and keep the breast moisturized.
I am sstill trying to wrap my mind around chemo and for my head to go commando...
I wish you all the very very BEST too.
Update: May 15, 2015 (Friday) - Hello Ladies, reporting back:
It's 7 weeks since my lumpectomy and breast reconstructive surgery using the ROUNB-BLOCK TECHNIQUE. Right breast healing wonderfully. My OPS checked it yesterday at noon and said it is settling in nicely. I agree. Now, applying moisturizer every night before bed. Also apply the Mederma Scar Cream to fade scars (it works on my gf left hands. She had 3rd degree burn and after 3 months of daily application, her scars totally healed, and her skin back to normal without the watch patches! Isn't it terrific. I am so happy for her).
The 4 inch scar from sentinel lymph node dissection healed nicely too, so applying Mederma Cream there as well. Started chemo #3 three weeks ago, going for #4 Tuesday. Started hair loss Tuesday night during shower, May 13. Went for crew cut Wed. Best decision ever. Was told very Sinead O'Conner-ish. Haha. May 14, fatigue just started seeping from today. Needing more sleep than usual...Continue to take supplements to boost my immune system (agricus blazei), and OPG3 (red wine extract/grape seeds extract). They seem to work as all blood test prior to each chemo are still within normal range. Still drinking 4-5 liters of water/soup/juice combo daily. Seems to reduce side effects from chemo drugs. Going to enroll for gym class to counter fatigue.That's it.
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florida2015...I think you will find the rads very doable....just time consuming. I was lucky and did the internal rads that only took 1 week (twice a day). So glad when it was finished. I'm with you on dreading Chemo...I had a 24 and BS didn't recommend it for me. I was so relieved. Best of luck.
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Nat_ SG..... I'm also Her2/neu positive... Please look at the type of BC each of us is dealing with as you make choices. My chemo will take 12 months. I am not aware of any Her2 positive treatments that are less than 12 months... just saying...
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NAT SG, I'm glad everything came back negative, and also that you have a plan! Great that you already had successful reconstruction, too.
My situation is different from yours, in that I had pure DCIS, no invasive cancer found. Since that means that the cancer, by definition, had not spread outside of the duct, I do not need chemo. Since I was also ER & PR negative, I also don't need hormone therapy. I actually never had a Herceptin test that I know of—again, probably because it was pure DCIS. So I really know nothing about chemo (and hope I never have to learn, but I realize there are no guarantees). I did do 4 weeks of 5-day-a-week radiation, which I finished on March 30. I got through it with my skin intact, though it was red, tender, itchy, and in other places, tanned. The colors are fading and I'm starting to get some energy back, day by day. My RO recommended a lotion called Miaderm, so that was was I used exclusively and am still using (I bought plenty and was advised to finish whatever I had, before switching to another moisturizer).
I wish you the very best. I know it's hard to come to terms with.
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