Lumpectomy Lounge....let's talk!
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Just need to vent. Had a follow up mammogram Tuesday. I opted to pay for the 3-D since the insurance refused to. Ended up getting multiple scans as the radiologist kept telling the tech she needed more including closeups of the area that was in question in my MRI in May. So now I'm back in the 'stressing while waiting for results' phase again. If they would just give me the MRI they had said I would get in September, I would feel like I was being taken care of properly. I still don't know - seven months after my lumpectomy - if all the cancer was removed.
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Tappermom,I went to the Doc that will be doing my radiation.He seemed puzzled when I asked what type radiation I would have. He then said,"external beam" for 4 weeks.(Guess that means 20 treatments) The nurse said "you must not miss a day" (yet they are closed Thanksgiving & day after) Looks like my journey to be cancer-free continues.
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Chips - Very odd that your RO did not give you better info. I had a similar size/grade tumor, also on the left. 20 rads, 16 "regular" and 4 boost to the tumor bed. Did the RO discuss the whole process of mapping, test run, & then rads start? With rads on the left, they should discuss "deep inspirational breath hold" to protect organs? How about creams to use, or other care instructions? PLEASE, PLEASE PM me if you did not get good info about rads. I put a lengthy post out on one of the "monthly" rads threads that I can share with you. (Believe Tapper will also recollect that posting.)
Re: Timing of Mammograms - Seems all over the place. Lumpectomy was 12/21/16, rads ended 3/21/17 and 1st mammo is not scheduled until 1/17/17!
Ellyn - Cannot believe a mammo was done 2 weeks post surgery - I would have screamed the place down in pain! Hope things get better for you.
Tapper - Great news about the Zumba - have fun!
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Chips, my brain doesn't always remember the words I'm looking for these days. I had external beam radiation - 33 treatments (and I couldn't think of the word "boost" the other day - I had 25 regular treatments and eight boosts). It was brachytherapy I couldn't think of the other day - it's a shorter treatment. And I had to miss Memorial Day and Fourth of July as the center was closed. Did they schedule your mapping yet? Best of luck to you!
MJ
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I had a lumpectomy last Thursday, I had a 5cm tumor which they still don't know if it is benign or not as waiting for the pathology report to come back, I'm nervous as hell I'm not eating, the scar is healing well bur a little infected so I'm no anti biotics now for that, my head is in such turmoil I have rang the breast clinic which I'm sure they are sick of hearing me to be honest, when I was washing the other day I felt that the lump was still there a lot of people have told me that it's just fluid collecting in the hole where the tumor was but I can't stop thinking what if they didn't take it out what if it's been left in? I don't want to keep ringing them cause I don't want them to think that I am going mad, I. Just don't know what to think or do at the moment
Has anyone got any advice
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SJI - have you talked to your BS? Maybe write down any questions you have and call for an appointment? I am sure they must have gotten all the cancer or you would have heard something by now. Did you not have a follow up with your BS after the lumpectomy? Where I live they don't do MRI's unless your cancer comes back as fast spreading, I have to have faith in my doctors that all is ok. Good luck, Cheryl
Carly - I had my lumpectomy October 18th and last night spent 3.5 hours at the emergency room due to swelling and pain. The doctor said that it's blood pooling in the space left from the SNB and that eventually my body will absorb it, but to watch because it could turn into an infection. I wonder if this lump you are feeling is the same thing, blood filling in the empty space from where the tumor was? I wouldn't feel bad about contacting the breast clinic with your questions, this is a scary time for us and most nurses will understand. It's their job to answer or point us in the right direction. When do you see your BS next? I see mine on Monday for my post surgery follow up, write down any questions you have for him/her. Until then try to find something to keep your mind focused, a craft, reading, go for a walk, etc. Take care, Cheryl.
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hi Cheryl
Thank you so much for your kind response, I am waiting for my results but on my letter from the hospital it says I don't have a follow up I am in the UK and not sure if this is normal practice here, I rang the breast clinic yesterday they told me to go to the gp and see if it''s early infection which it is so he's given me a 7 day course of anti biotics so I rang the nurse back to tell her how I got on as she asked me to and to call me back but it's 13.34 and still no phone call, I would feel more comfortable to go back to the breast clinic and get the consultant to just check it for me then I'd feel much more at ease, am I allowed to do that? Request an appointment? She is in about 3 days a week and the rest I's a private consultant, I wasnt sure if I can ask to see her as I know she will be booked up with other patients, I just don't want her to think I'm mad and just creating problems if you know what I mean
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Celia,The RO did explain that mapping & a test run would take place with breath -holding & regular breathing.Should I ask hat the radiation be done while holding breath? Is it safer ?
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PontiacPegg - Even the radiologist seemed surprised I was getting a mammogram less than 2 weeks after radiation. I could tell by her questioning me, so I told her to go ask to make sure. Next thing I know I'm getting a mammogram. I'm in Illinois and went to the hospital I did for the lumpectomy because this surgeon is supposedly very well known. My steri-strips are still on and he told me to just leave them on until they fall off. He said that the longer they stay on, the better the chance the scar will look better, even unnoticeable.
tlfrank - Yes, we'll have to keep in touch. I have an appt with RO the second week of November and the MO the first week. I was concerned that I'm starting so late here but the surgeon said no problem. I hate that I'll be doing this over the holidays. We usually host Christmas day but I may be rethinking that. I'll see how radiation goes.
carly597 - After my lumpectomy they told me 7-10 days for the pathology report. Don't worry about calling them, I'm sure they understand. I'm still very sore and it feels kinds firm around the nipple. The surgeon said it's healing.
Tappermom38 - Zumba sounds fun. The hospital I'm going to for radiation (different than where I went for surgery) has a very nice program for cancer patients/survivors and I'm looking forward to some of the exercise classes. Right now I can't even imagine bouncing around though!! I'm currently signed up for a meal prep class and a menu planning class.
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Chips530 - The rad techs I had were wonderful at instructing on the breath technique and will guide you through it - they can tell if you are breathing deep enough to protect your organs, and will not "beam you" if it is not right. Hope this helps. Rads was something I felt very anxious about, but it worked out OK overall. Please ask your questions, as many of us have been where you are. Healing thoughts being sent out to all who need them.
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Carly, I'm confused. You had a lumpectomy before getting a biopsy and still don't know if you even had cancer? Did you discover a lump or did it show up instead on a screening mammo (like mine did), and did you have followup imaging to determine the need to do anything about it? Or did they just cut first & ask questions later? Here, they never do surgery if they don't know whether it's malignant or benign, and what kind of tumor they're dealing with. (IDC/ILC/DCIS vs. ADH, LCIS or fibrocysts). Sounds like the post-op "lump" is a seroma (fluid pooling in the cavity where the tumor had been--nature abhors a vacuum and tries to fill it in) or hematoma (blood instead of fluid).
My radiation was 16 daily (M-F) high-dose external-beam sessions (basically, the equivalent of boosts) aimed only at the tumor cavity. Very mild side effects--no pain, itching or broken skin. Just swelling due to enlargement of the seroma (my LE PT also had me wear those "Swell Spot" pads in my bra, and sleep in a "leisure" stretch bra for about 9 mos.), pinkness fading to a light tan, and painless thickening of nipple & areola. The seroma shrank down to <10cm, and that's as small as it'll get--fine by me. My cancer breast now looks "normal"--round & perky albeit still big; my "healthy" one is, by comparison, large & droopy. I used to call 'em Thelma & Louise, but now they're more like "Mutt & Jeff" or "Abbott & Costello." Can't tell the diff. once they're in a bra.
My hospital didn't have a bc boutique, but there were several in the Chicago area. I went to one called Second Act for my compression sleeve & gauntlet (which I wear for workouts & long flights). As to bras, Medicare (and by fed. law, all insurance) will pay for 2 a year even if you only had a lumpectomy--but the cup size I need (underwire, 40F or G, dep. on brand) is way too large & expensive and as such Medicare won't cover them (Empreinte, Prima Donna, Elomi, Goddess, Third Love, Wacoal). Nobody makes mastectomy bras any larger than DD or even D, nor do they make forms that big. The only covered bras are by the mastectomy-bra makers. But insurance doesn't have to cover compression wear or any LE treatment equipment. So few do, and Medicare doesn't.
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Thanks Celia,I'll remember to ask the techs for help in deep breathing
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ChiSandy,you said in your post that "Medicare will pay for 2 bras a year even if you've had a lumpectomy" What is the link that you go to for ordering them? Thanks. P.S. I am not large on top,but really like front closure.
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ShockedAt48 - I see a NP that is with my breast surgeon oncologist. I will see them every 3 months as well as my medical oncologist. I will have my first mammogram 6 months out from radiation - that will be in February. I think having that will bring more comfort than a breast exam. I would take comfort in knowing your oncotype score is low. Mine was pretty high, so chemo was needed. My BSO relies heavily on that to determine if chemo is needed. It is hard not worry though and wonder if we are doing what we need to do. Especially since we all seem to be doing something different when it comes to treatment. I hit the big 50 in January - yikes!!!!
Ellyn - my goodness, I am still pretty tender even after 5 months! Can't imagine having a mammo that soon. I am so sorry!!
Carly597 - do you have any "swooshing" noises? When I had the fluid, I would hear that when walking or bending over. It was crazy and a bit creapy - thankfully my BSO had warned me about that . Always call your dr if worried though - that is what they are there for!
ChiSandy - I have to laugh because I think of you often because just as you said - the radiated breast is nice and firm and then there is saggy baggy. All is well though once the bra is on ha! A little smaller, but not too bad. Thankfully, my insurance is covering my compression sleeve. Do you replace yours every 6 months?
Prayers and hugs all around!
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hi I m new here
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Welcome, Farisha! We hope you find this to be a supportive place, please let us know if you need assistance with anything. We look forward tp seeing you on the boards!
The Mods
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no hun I had a untrasound then a core biopsy and they said they can't tell from the biopsy wether or not it was a phylloides tumor and cause they grow rapidly they wanted to remove it, which I did last Thursday, the results came back as being a fibroadenoma and it's harmless and I don't need any follow up or anything, I was just worried as where the lump was is a haRd and feels exactly the same as the lump did, I wasn't advised this would happen so I panicked, I'm sure they are sick of me ringing them lol saying that I've only called twice, I suppose it's only natural to worry etc I just was worrying incase they didn't take it out, just waiting for the written report now
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Chips530 - my hospital has a boutique called Pretty In Pink. You can go there to get your bras. Check with your surgeons office or MO and see if they can tell you where a boutique is located. My BS is the one who told me about it.
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I haven't tried to buy any Medicare-eligible bras yet (have yet to see any in my size at the breast cancer boutiques), but you can Google "mastectomy supplies" and the various online stores should have Medicare & insurance reimbursement links. I sincerely doubt that Rigby & Peller takes any insurance (certainly not for a $130 Prima Donna or a $200 Empreinte)--and HerRoom & Bare Necessities don't. Pretty sure that only surgical & mastectomy bras (even if we don't need to put forms in them) are covered. And if you see an underwire one in 40F or G please let me know!
My sleeve & gauntlet wasn't covered by my insurance (wasn't on Medicare yet) because the boutique took only BCBS, not United (and I needed it quickly because of a long int'l flight coming up).. And Medicare won't cover compression--not even pumps & night garments for advanced lymphedema. I have yet to replace mine, because I have a wardrobe of cool patterned ones from LympheDivas (some on clearance). I don't wear them every day; and when I wear them it's for no longer than it takes me to work out (about an hr. incl. cardio) or a 4+hr flight plus 1 hr before & after. So they don't see much use individually, and I wash & dry them to keep the elastic good & tight. I'm lucky my LE is so mild that wearing compression is just for prevention.
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Hi Farisha, sorry that you are here but glad that you found us. Can you tell us where you are in your journey that no one wants to take? Maybe a little about yourself? The ladies here are a wealth of information. We discuss just about everything. Some cancer related and some just day to day in our lives. Welcome.
Jo
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I had a lumpectomy with a reduction and lift on October 3rd. Everything was fine until about a week ago. I had some pain underneath my breast and I couldn't figure out what it was. I went to see my radiation oncologist who noticed a small opening where the cut was made. It's small, but I was wondering if anyone has had a similar issue with their surgery. I went to see my plastic surgeon's nurse, and she said it should close, but my question is how long will it take? The nurse said she see's about aid 65% of cases like mine and they are mostly big breasted women. I see my plastic surgeon Monday, but I'm concerned. it's been a long year. I've done chemo, breast surgery and about to start radiation. I just want this to be over with. Any comments are appreciated. Thanks.
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cobrasmom, it took my lumpectomy incision on one side nearly 5 weeks to fully scab over. Until then, it was a little open and wet on one end. The radiologist (who saw me for a consultation) was concerned, but my surgeon wasn't. He said I'm just a slow healer.
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Welcome, Farisha and any other newbies.
Chips530 - Hopefully you will not need to ask the rad techs about breath holding. If they are like mine, it is all part of the treatment and they just launched right in. They were very caring.
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Probably a question that has been asked before, but I'm two weeks out of my lumpectomy and now I feel a lump that was similar to the original in the exact same spot but the incision. Though it seems like it must be larger as even has my boob look misshaped. Is this normal? He just (oncologist) examined me on Wednesday last week. I can't imagine a "tumor" has grown more than 3 cm in 3 days? Can it?
Thank you for your help ladies.
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Hi Karentwriter! I believe what you're feeling is the healing ridge. According to the Komen Foundation, "You may feel a firm ridge below the scar while it heals (called a healing ridge)." And the website Surgeonsblog says, "As much as feeling the healing ridge can alarm the unexpecting, it's a sign of health, the indication that help is on the way, that work is going on to effect healing."
I definitely have this, too!
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vampeyes The BS told me he wasn't sure he got it all at a followup appt in May. He was looking at the MRI taken in May. That's when he told me we'd get another one in September after all the swelling had gone away. I had a seroma at the time. He said if he hadn't got it all it would just require a small surgery to get the rest.
I have an appointment in December to see him and go over the mammogram results.
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Today I seen my BS ass found out, " Margins not clear", back I go in a couple weeks for another lumpectomy. Thankfully a positive is no lymph node involvement. Yay.
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Today I seen my BS and found out, " Margins not clear", back I go in a couple weeks for another lumpectomy. Thankfully a positive is no lymph node involvement. Yay.
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Sorry to hear that vampeyes. Fingers crossed for clean margins on the second go round.
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Thank you tlfrank. Pretty sure after all tests are said and done I will be going for a mastectomy. Time to reseach my pro's and con's.....
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