Lumpectomy Lounge....let's talk!
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BarbMac, I hope your procedure went well and that you're on your way to recovery. I had lumpectomy and SNB too and like you, I was told that the next step would be radiation. My BS told me there would be another pathology report to discuss when I came back in a week for follow up.
In hindsight, I clung too tightly to his prediction that radiation would come next. My pathology changed from my pre-surgery needle biopsy to the SNB and I found myself on an 18-week chemotherapy program. My last full round is tomorrow, but I can still remember feeling quite whipsawed when my BS came back with the new pathology and Mammaprint results that were unequivocal: more aggressive tumor pathology, so corresponding chemotherapy plan. I start radiation next month.
You are a warrior and it's not fair that any of us are in this situation. I'm sure your thoughts are flying every which way; just keep breathing and guarding your heart. I have learned from these boards that things can change in a heartbeat, but the most resilient, adaptable women I've ever known are here and together we can face anything.
Sending you tons of positive energy and prayers.
Mindy
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ReadyAbout--you might also try some silicone nipple shields inside your bra to pad them. (Not the adhesive paper nipple covers). I forget who makes them, but they're part of an end-cap display at CVS or Ulta along with fashion tape, bra strap slip-through strap clasps, jean waistband strap clips, etc.
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Hi. I had my lumpectomy on 3/15 and won't have my first MO appointment until 4/13. This is because the doctor cancelled my appointment scheduled for today (an hour before the appointment time) and the soonest appointment I can get is 4/13. I'm kind of freaking out because I'm scared to wait so long to start radiation (I probably won't need chemo: my onco score is 18 ). Does anybody know how long is too long to wait to start radiation? Has anybody out there waited more than a month? I'm sorry if this is already dealt with on this site - I'm such a wreck I can't read through the whole thing to find out.
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I waited over five weeks before starting radiation--6 is the recommended max. interval to allow for healing from surgery and possible complications. A month may be too soon. With an ODX of 18 you're "on the borderline" between low and intermediate risk; a couple of points higher--or if you're younger--and a MammaPrint or Prosigna test might be ordered to narrow it down to high vs. low risk. But surprised you had to wait till today for that initial MO appt. (which got pulled out from under you). My MO appt. was a week after surgery, but that was when my MO ordered ODX for me. Maybe you can get an RO appt. first, at least to get mapped.
Where are you located? And what kind of facilit(ies) is directing your care? Much easier & more advisable to be at a centralized hospital, for one-stop-shopping. I'm lucky enough to have a major health network's flagship teaching hospital 20 minutes away (40 min. by public transit), with both a Breast Health and regional cancer center onsite.
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ClareCo, Welcome! Please take a deep breath. You were unlikely to start radiation before 4 weeks post-surgery. I started mine 6 weeks after. You'll be fine. That is very discouraging that your appointment was cancelled and at the last minute. But it is delaying things only a week. I know it seems like forever. We all want to get treatment YESTERDAY but it rarely is necessary to hurry along. It was over 6 weeks from DX to surgery for me. For one thing I had to arrange to have my sons come in (one after the other) to care for my husband/their father while I recuperated.
Please fill out your profile and make each and every item PUBLIC via the SETTINGS tab. We also would love to know where you live - that can make a difference when answering any questions you may have. It is hard to remember everyone's particulars so we check below the posts to remind ourselves.
HUGS!
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Thanks ChiSandy. Question - am I supposed to be making a separate RO appointment too?I really suck at this. I guess I should call the MO office tomorrow morning and ask if they have an RO they work with. I initially waited so long because I wanted to go to somebody that was personally recommended by word of mouth.But I figured at the time, better to go with someone that somebody likes and respects than leave it up to "next available." Now I'm second guessing that choice.
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Thank you, Peggy! I really appreciate your post.
I think I've made my profile public now. I'm posting this as an experiment to see if it worked. If it doesn't show I'll go in and try again to change settings to public.
I'm in Philadelphia - so it's amazing that I'm having such troubles getting appointments. I am going to phone ROs tomorrow and hope I can get something within the week of my MO appointment. I was trying to line up second opinions because my ODX is right at the line between "low" and "intermediate" and the surgeon said that's a tricky line to walk. At this point, I'm just holding my breath for FIRST opinions. But wait- you told me to take a deep breath, so I will.
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ClareCo, The waiting is perhaps the worst part! Take several deep breaths. I''ve been told starting radiation up to several months after surgery is ok. Remember the major purpose of radiation is to prevent (or at least decrease the chances of) a recurrence. So my suggestion would be to meet with your surgeon first. Your most effective treatment will happen if you have a treatment team whose members communicate with each other.
I started radiation just 6 weeks after my surgery and early on I thought my incisions might have felt better if I had waited a a bit longer. With a week to go it is going ok and, of course, I'm looking forward to being done. . .and then figuring out what will be next.
Hang in there.
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Clare, does your hospital have a “nurse navigator” you can consult to help you set up appointments? With a positive node and PR-, you might want to ask for a MammaPrint to make sure about your recurrence risk. (It has no intermediate category)
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ClareCo., you got your settings right! If you haven't read Dr Susan Love's Breast Book, you might pick up a copy. It tells you almost everything about breast cancer that you need to know. It is very helpful. I'm with ChiSandy on the MammoPrint. At an OncoType of 18, I think it would help. Perhaps your MO can help make that decision when you see him next week. It is all so hard because when you start this journey, if you're like most of us, you don't know a thing, and you don't know what you don't know. That makes it extremely difficult to ask the right questions. And every patient is different. It's crazy.
HUGS!
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Thank you, Beaverntx!
You have all made me feel so much better and given me such helpful information. thanks to you all I will actually SLEEP tonight. I hope I can be as helpful to others in the future!
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ClareCo, we all like to pass along what we've learned and help smooth the way on this rotten journey. You'll share in the future, too. And just because you are just starting out doesn't mean you don't have something to contribute. Always feel free to!
HUGS!
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ClareCo - the other wise ladies here have already given you great advice. You can’t start radiation too soon as you have to heal. My surgery was on 3.31.17 and I started radiation on 5.22.17 - almost two months later. And that was right on schedule. I had my appointments with my RO and MO at the beginning of May.
I hope you’re feeling well and getting plenty of rest. I kept a small pillow under my treated arm for quite some time - it helped ease the discomfort.
MJ
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Just wanted to share my timing for comfort. Two years ago I needed a second surgery to clean up margins so didn’t start rads until about two months after the initial lumpectomy. I just had a three-week post-op check-in with my BS yesterday and he said if I were going straight to rads I am nowhere near healed enough to start. Your BS will have to clear you for the next step. Where I am you *have* to have a consultation with an RO before surgery. Establishes that you’re a patient and you get a lot of good information about what’s coming. And re: the MO, last time I didn’t have one but this time I won’t have my first appointment with an MO until a little over a month post-op. I actually really like the 4-6 week downtime following surgery—it’s a little respite when life can be relatively norma
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ClareCo: I had a lumpectomy on 2/23 and won't start radiation until probably 4/23. On the day I was diagnosed, I wish someone had told me that cancer was going to involve A) lots and lots of waiting and
lots of good news/bad news scenarios, which have been emotionally draining. (Good news, your cancer is very treatable! Bad news: oops, it looks like you have a gene mutation. Good news: Hey, the gene mutation is actually an alteration, you're fine! Bad news: But the tumor test as high grade so we need to send it out for Oncotype.) I talked to my navigator yesterday about this 8 weeks lull and she said that yes, while some rogue cancer cells could break away and migrate to other areas before I start radiation, it is highly unlikely that they will do so and she's seen patients wait this long and do fine. 0 -
I am actually hoping that I can wait to start my rads till after school is out(May 31st). My surgery was 3/29. I was able to have appointments with both my MO and RO the week after meeting my BS. I will not see my MO/RO again until 4/18, which is almost 2 weeks after my follow up with my BS which is tomorrow!! Yeah, hoping path results are in and good.
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ClareCo, my surgery was 1/30. My first RO appt was 2/27, and first MO appt was scheduled for 2/28 but got rescheduled last minute to 3/5. My Oncotype score was 21, so I am STILL waiting for mammoprint results. I qualified for partial breast accelerated radiation, (2 treatments per day for 5 days, same total amt of radiation as traditional) so I did that 3/19-3/23. If I had to do traditional radiation, I would still be waiting, since what I had has to be done before chemo. I was able to get it done and out of the way. Waiting to find out about whether I need chemo is getting to me, tho...
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ClareCo - Welcome! That waiting to hear whether chemo is necessary was nerve wracking for me, also. Timing of rads - did not start mine until almost 8 wks after lumpy - I was not in any rush to start & needed plenty of healing time first. None of my care team had any objections to this timing. Gentle, healing hugs to you. (and anyone else in need, as well)
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Hurry up and wait! The name of the game!
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Got my mammoprint results today...low risk. NO CHEMO!!! I didn't realize just how worried I was until I got the call. Next step is Hormone blocking therapy. I hope those who are waiting on results get them soon, and that they are favorable!
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That's great, Donna! I remember the day I was told no chemo necessary...HUGE relief.
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Happy dance, Donna!!
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Just checking in...had my routine MO appt today. All is well 2-1/2 post cancer diagnosis, 2yrs post BMX, 2 yrs on letrozole. I worked up the nerve to ask about my risk of recurrence if I decided not to take the letrozole. Holy cow! 35%. Yikes! Won't be dropping that any time soon.What a lot of changes we've had the last 6 months. Bought a camper, sold my house, moved to AL to fix up Mom's house, moved to FL, sold camper/bought a bigger camper, moved to GA, sold Moms house, took a new job. We've lived in 5 different residences in 3 states since Oct! But now we're getting settled, living in our RV in the beautiful North Georgia mountains and it's all good.
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Poodles, you are looking so beautiful and happy! That's quite an upgrade in the camper!!! No wonder you haven't been posting much. You haven't had time. It has to be a relief to have gotten your house and your mom's house sold. What type of job have you taken?
That's pretty scary news your MO gave you if you stopped letrozole! Makes the decision almost a no-brainer, doesn't it? Are you happy with your decisions? How's DH? What about your son?
Stay happy, Dear Friend!
HUGS!
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Thankfully, the SEs from the letrozole are minimal, so I will happily take it to reduce my risk to around 15%. Still higher than I'd like, especially with two gene mutations, but it's better than 35%, that's for sure.
The kids are gre at. DD is a pastry chef with a well-respected Atlanta bakery. Oldest DS is looking for a house. And Younger DS is turning 23, still growing! OMG, his feet and legs just keep getting longer.
My job is really fun. I'm a campground host where we live. I make reservations, sell firewood, point people to the best BBQ, waterfalls, and whitewater rafting. And I get to live in the mountains every day! We plan to be here until about Thanksgiving, then move back to FL for the winter. It's just too cold in the mountains to live in an RV during winter.
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Donna, congrats!
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Poodles, lookin' great & livin' the dream! If only I could get Bob to retire--another cardiologist at Union Health died at 80, after a flight to India to visit his relatives. DVT? Anyway, more work for Bob. At least it's not at one of the hospitals, it's closer to home, shorter hours and there's no administrative doo-dah to bog him down. His current office practice is dying off...literally (mostly geriatrics). Those patients who remain are increasingly seeing their insurance or Part B supplements narrow the panel of covered providers. Of course, walking away from the practice entails a huge pay cut if it morphs from his side-gig to his only one...but we do have a decently secure retirement fund. Several, in fact. We haven't even filed for Soc. Sec. yet.
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Hi Ladies
Just wondering if there are any of you living with a hardened seroma? Both surgeon and oncologist said to leave it that it will eventually get reabsorbed by the body . I waited almost a year and instead of going away it’s become a large hardened painful mass ( size of a large lime approx) I am worried about the mixed in scar tissue and what to do about it? Any thoughts or experiences re: seromas would be most appreciated...🙏
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ReadyAbout, that is so true. I feel like I have whiplash from the first annual screening in January. One thing that has helped me is keeping a folder full of notes--I have copies of all rest results, recommendations, doctor notes, etc. I also have a collection of articles. I write a lot down. It really has helped me keep my head on straight--very important now that I've started chemo. Hang in there! The waiting really is hard.
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