Lumpectomy Lounge....let's talk!
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SuCq51, what a blow! Hugs to you!
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SuCq51 so very sorry for the news you got. If my margins weren't clear I would have gone for a UMX as well. You sound very upbeat in your post and that helps a lot. Many good thoughts to you. Hang in there.
Nancy
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Su-CQ, I am sorry you need more surgery. Many times with a mastectomy, you don't need radiation. If breast tissue remains or the cancer was close to your chest wall, radiation may be required.
Since your nodes are positive, chemo will most likely be in your treatment plan. I want to let you know that if I can get through chemo, you can too! Yes, it is difficult.... but it isn't like it is portrayed in the movies. I feel much better than I thought possible while going through chemo. So far, I have had two infusions. If chemo is part of your treatment, it won't start until your body has a chance to heal from your surgery.
I'm glad you checked in and updated us on what you are facing. I will include you in my prayers.
Poppy
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Sue - a couple of bits of info for you: my onc. and surgeon both advise that chemo is NOT automatic despite having at least one known malignant node (seen on mamm. & US, then biopsied), which bumped me into stage 2. We're doing neoadjuvant Femara to see if we can clear the node prior to surgery (among other reasons). Have you received your oncotype score yet? If it's low, you may be spared the need for chemo.
If the node doesn't respond, we're going to do Axillary Reverse Mapping rather than the ALND that previous surgeons insisted was the only option. This (ARM) tends to disrupt the lymph flow less, so lessens the chance of lymphedema. Not all surgeons are familiar with the technique, unfortunately, but do ask about it; you may have a better outcome with it.
Despite the fact that you're heading for a UMX, please do hang around in here; we'd miss you if you left!
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Thanks so much PontiacPeggy, Nancy2581, PoppyK and Hopeful! I appreciate your support. Just when you think you've accepted what's happening.... BC can say Wait a minute! Change in plans!
Thanks Nancy, yes the UMX seemed the best decision and I'm at peace with it.
Thanks PoppyK ! I can do this!
Thanks Hopeful, no I haven't received an oncotype score. My BS didn't mention anything. The path report says Breast biomarkers have been ordered. I don't think that's it though is it.
Take care !
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Su-CQ51, I had a similar surprise. No one expected that the cancer would have made it to a lymph node, but it did. My oncotype score is in the intermediate range, so having cancer in the lymph node pushed me into chemo territory. It took me a few days to wrap my head around that. Honestly, after reading the experiences that ladies are having with MX, I'd do anything to avoid that. Before you panic, wait to hear what the recommended treatment is. I'm going once every three weeks. Plenty of time to recover in between. Also, if you decide not to, be sure that you will able to make the decision and never think about it again. I for one would not be able to live with myself if mets developed and I hadn't done everything possible to prevent them. But that's me.
The doc did tell me that they do not handcuff me to a chair for the infusions, and I can stop at any time, my choice. I'm going for my first infusion today, I'll let everyone know how it turns out. Plenty of women do this with only minimal SEs. I hope that I am one of them.
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Thanks Sjacobs146! Our paths are very similar! I know that I can't have reconstruction with implant due to a muscle issue. It would have been delayed anyway because of my chances of chemo, radiation or both. I don't think I'd be brave enough to go through the other reconstruction choices. The DIEP flap is also out since I had a hysterectomy 20 yrs ago due to many fibroids in uterus. The PS said there is a different version of it that takes about 6 hrs instead of 8 or more or the one that involves the shoulder muscle? At this point a prosthesis sounds like I would be able to function and take care of things at home. And I'm ok with that. All I want right now is what we all want... to rid my body of this bc ! Whatever it takes!
I'm sure today is stressful and yet you also know you're getting rid of those cancer cells with this chemo! Thanks for the great advice and I'll be thinking of you and hoping your SE's are minimal!
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Sjacobs146 and Su-CQ51 the same thing happened to me. I had 4 doctors telling me they didn't think the cancer spread to my lymph node. Surprise it did. I am now more than halfway through chemo and though not a walk in the park it's not as horrible as I thought it would be. I too think I have to do everything possible in the hopes of never seeing this beast again. Hang in there ladies
Nancy
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Su-c I'm sorry that you have to go to the table. That was my kinda of thinking too. If my margins weren't clear and node involvement, I would hve had the BMX, especially since you have ER+and PR+. Oncotype is done for those that are ER or PR +. Its classifies the risk so chemo is better determined if needed. I thought node involvement meant chemo but I could be wrong. Good Luck on the surgery this time. I hope you can close that chapter and have some peace of mind before the next one. Im the type who needs a plan, so haircut it is. I may get another one even shorter right at chemo D-day to minimize the trauma of watching it fall out. Baby steps.
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thanks Nancy2581! It was one of the questions I would have asked and couldn't think'of until later of course. Did anyone ever explain how it can be early stage and still invade lymph nodes? I'm glad you're more than half way and I see you started in July. It's a long process I guess but as you said not as horrible as you thought.
Thanks nitengirl1! Love the avatar pic! I don't know if it works this way but hoping chemo would get rid of any bc cells if they missed anything in other breast. Yes, I'm a plan girl too and way too many lists that I need to update and make a list to compile it all! Lol I'd rather have really short hair too and when you think of it maybe it'll just go down the shower drain instead of collecting in the drain! Silly I know but it's a positive!
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Nitengirl, so many people think that chemo's a given with lymph node involvement but all of the MDs I've spoken with from the beginning (surgeons, MO, RO) have all stated that it's not necessarily so, at least in my case. I am REALLY hoping to avoid it but kind of have a feeling it might be in the cards anyway. After all, nothing else has gone as I would have hoped with this, so why expect anything different at this point? I know that sounds very negative, but at this point that just seems realistic to me. If I do have a low onco score it will be a very pleasant and welcome surprise.
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Hopeful82014, it wasn't just lymph node involvement that tipped the scales, the decision involved the size of the cancer cells in the lymph node. Mine was 2.1mm, if it had been 1.9mm they would possibly not have recommended chemo. My breast tumor was very close to the lymph nodes, the two incisions are only about an inch apart, that may explain how early stage cancer got to the lymph node.
Anyway, just got back from my first infusion, and I'm feeling fine. If anyone wants the details, I'm posting them on the chemotherapy before, during, and after board under the October 2014 topic.
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same here. I did not have an oncotype test. The tumor in my one node was 2.8mm and I had LVI. My tumor itself was 2.8cm. My tumor too was also very close to the nodes. In fact, I only have one incision for both the lumpectomy and SNB. It's a lovely 2 inches long but not bad.
Sjacobs glad you're feeling fine. It's a relief to get that first one over with. I know I was terrified for the first infusion. Now no big deal.
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Everyone was surprised when cancer was found in my lymph nodes.... all of the docs and me, too! I had a very similar experience to Sjacobs.... My cells in the node were 2.2mm, under 2mm is considered micro-mets and doesn't automatically mean chemo land. There is more info on breastcancer.org regarding when chemo is needed and what is involved.
Sjacobs, I wish you manageable SE with chemo. My most difficult days are days 4-7. We seem to be on the same path.
SuCQ, I had a more difficult time recovering from my surgery (lumpectomy with bilateral reconstruction) than I have with chemo. Chemo is not a walk in the park (as Nancy put it)... it's more like a long hike where sometimes you are hiking uphill and over boulders, others the path is nice, flat and shady.
I want to do everything to make sure the cancer is gone! I am relying on chemo and radiation to kill any cancer cells left in my nodes. My BS did not want to remove any other nodes because of the risk of lymphedema.
The Oncotype DX is typically ordered when you are node negative to help determine if you will benefit from chemo. Insurance usually will not cover it in other circumstances. That said, my DH convinced my excellent insurance to cover most of the expense of the test. The test is much, much less expensive than even one chemo infusion.
Regarding hair, I got a short pixie cut. Day 14 after infusion, I started to shed. On day 16, I had enough hair in my shower drain to make a hamster. On day 17, I had my hair buzzed... but not to scalp. This is what happens to most of the people in chemo land.
Wishing everyone a wonderful weekend!
Poppy
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Poppy, we had our lumpies on the same day. Obviously our paths have been different. I know we all want to do everything to get rid of BC. I was sure I'd have to have chemo (some of us don't have good luck) and was pleasantly surprised when I didn't need it. Rads done without much fuss. Now on AIs for a whole week with no SEs so far.
Good luck to all of you travelling that challenging chemo path. Many hugs!
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I must have very generous insurance, they did the oncotype with the tissue from my biopsy. Didn't have to wait for surgery. Of course it has to come back intermediate. I have the most average case of breast cancer in the history of the disease. A few points and literally 2mm made a huge difference.
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Hi, Sjacobs - that's too bad about the size of the cancer in the lymph node. I just hope the chemo knocks it all out of your system for good and am glad you're feeling o.k. after your infusion. One down - 3 (?) to go.
By the way, mine tumor's very close to the node as well. I'm hopeful that's the only reason it's in the node, and not because it has a particular propensity to spread.
Good luck!
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thank you so much everyone! I can't tell you how much it's helped me to hear about your experiences and how you dealt/are dealing with changes to diagnosis. I'm nervous about more lymph nodes being removed and maybe it's because surgery is closer now but I'm trying my best to be positive and not dwell on what ifs. I'm trying anyway and not always succeeding
. My PCP seems to get my path reports within a week so this time I'm going to see him to discuss path report and then have my questions ready to ask BS on Nov 12.0 -
Sue, you're having your surgery without seeing your BS? Could you call him and ask him now before your surgery? Like the others have said, whichever path you choose, don't look back; don't second guess yourself. Do it without reservation and with a positive attitude. HUGS!!!
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Hi Peggy, thanks for your concern. Sorry for confusion, I mean I will see my PCP regarding my Oct 30th surgery path report.
I saw BS Oct 10 for post-op Lx/SLND surgery and was expecting to find out when rads and AI would start. BS gave me the bad news from path report then and I was given choice of re excision or UMX and told that I would need between 5-15 more nodes removed since all three sentinel nodes she'd removed were positive for Cancer. I was so shocked and crying that I didn't think of all the how and why questions that I had later.
No worries about UMX . It's the unknown, the what ifs and has the Cancer spread further and how it's affecting my DH as you can well understand.
It's the ALND and the possible SE's from that procedure. I trust my BS and she seems to be very caring and to have my best interests at heart. Fingers and toes crossed 0 -
Sue, I totally get your worry about your DH. It almost overshadows the worries about yourself, doesn't it? The unknowns are definitely hard to cope with. I know you'll be just fine. May be a bit rocky getting there but you WILL!! The unknowns are definitely hard to cope with. Many more hugs!
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Finished my first day of internal rads. Have the weekend off, then 4 more days. RO said he saw "something" on one of the breast scans that captured the top part of my liver. Said it was probably a cyst but needed to have an MRI to be on the safe side. So I freaked....and wanted to get the MRI asap. They were able to schedule a MRI after my last rad so I hurried on over to get it done so I wouldn't fret about it over the weekend. As they were preparing me for the MRI they asked if I had any implants. I told them I have the SAVI (which is the devise used for the internal rads). The gal checking me in said she wasn't familiar with it so had me show it to the technician. He says "It should be ok". I tell him I'm not comfortable with that and would they please verify with my BS. Long story short....it has stainless steel in it and would have heated up inside of me!!!!!
I am new to all this doctor stuff and always assumed they knew what they were doing.....it was a real eye opener for me. What baffles me is why my RO did not know this when he requested the MRI.
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Nash, yikes! Hubby has stents for his heart and they mean he can't have an MRI. Some of them now you can, but not his variety. I agree with you, your RO should have know this.
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JoJoy, Yes I was given exercises to do after surgery. You should check out the exercise topic on breastcancer.org.
http://www.breastcancer.org/tips/exercise/treatment/surgery
If you have concerns about pain and possible cording, call your BS. They can't help you if they don't know what is going on. At first, I was hesitant to call them, but when I got their bill I realized they were well compensated for their time. ;-)
Poppy
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JoJoy I was given exercises too....but I didn't do most of them
My arm bothers me but I had problems with it before surgery. My node incision seemed more bothersome than the lump incision. I try to rest my arm propped up on pillows while I watch TV....helps a bit.0 -
I agree, Nash, my node incision was way more annoying. And it stung when I sweat. Damn nerves are numb but could feel that AND itch when the Tom's of Maine deodorant had aloe in it that I'm allergic to. That ended my use of deodorant until after I was done with my rads. It's still annoying at times. Must be the location. Lumpy incision just isn't an issue and I'm 3 months out.
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Wow Nash54! I'm so glad that you spoke up! I shudder just to think how that would have played out if you hadn't . Hugs to you! Would it show up on an ultrasound?
Hi JoJoy! I agree that the SNB incision is more bothersome. I was also given exercises to do and did them but arm still feels tight when I start first stretch. It does ease up as I stretch. It certainly wouldn't hurt to check with your BS or PT.
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Sue, I'm very glad that they do SNB now rather than just taking tons of them but, gee, you'd think they'd figure out a way to do it so the damned incision isn't such a pain in the you know what!
I never had an issue with tightness from my SNB. So my BS did a great job in that respect.
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Hi fello Lumpies, My radiologist referred me to a plastic surgeon to have reconstruction of my breast that I had the lumpectomy. The Plastic Surgeon would like to do fat grafting in the dent left from surgery. Has anyone else here had that done? I do not know anyone who has done this so its really confusing and I am not sure it is worth it.0 -
Ndgrrl, I'd be interested in hearing about that too although I don't foresee that I would be able to manage another surgery (with DH's condition). I also have a lovely dent and downward pointing nipple.
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