Lumpectomy Lounge....let's talk!
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ToughCookie, it's not an easy decision. I would have been perfectly happy with LX and rads for my relatively small garden variety stage 1 tumor, like my sister did (she is 5yrs NED). But then the tumor changed from luminal A to luminal B (more aggressive), so I needed chemo. No problem. Then genetic testing revealed two rare gene mutations and suddenly my breasts became a menace. So I ended up with BMX and botched reconstruction. While am unhappy with how I look, i am very happy with my decision to remove the breasts.
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Molly50, you have a low Oncotype score, and yet you had a gene that put you at a high risk for breast cancer? Does the Oncotype not take into account those genes? I have a low Oncotype and maybe I have been falsely feeling that I should be okay, at least for the next five years. Although to say that I skip through my days without a thought of cancer in my head is a big, fat lie. I struggle. When I got a new lump in my good boob in the last few weeks I really flipped out! (it's a cyst). But perhaps this Oncotype score isn't all it's cracked up to be if we have to insist on broader testing to get a good picture of our risk? Did you ask for more tests, did your doctor? How did it come about?
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hi LX ladies. I’m scheduled for my lx and SNB on 12/28. My bs did explain Lymphedema risks to me, but honestly I was not as focused as I should have been about that when I met with her. I’m now finding myself concerned about this....she was clear that LE could happen at anytime for the rest of my life after my surgery. I had kind of thought it was something where the risk would eventually pass.
I know there is a whole LE thread, but I don’t want to post there right now because obviously those ladies are the unfortunate ones who did wind up with LE issues. Would those of you on this thread who had a lx and a SNB (rather than the full node dissection) chime in and let me know if you did experience LE? If anyone knows of alternative testing that gets the doctors the same info they need about spread to the lymph nodes without the same LE issues, I’d be glad to hear about that too.
Thanks!
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Runor, your Oncotype score is based on the BC you HAVE since it is done on tissue removed during your surgery. It doesn't test for genetic mutations you may have. That requires separate testing. I did not have genetic testing and am not exactly sure when this is indicated. However, there some reasons you might want genetic testing: your heritage (Ashkenazi Jew e.g.), close family members with BC or reproductive cancers. I am sure there are others.
DagnyT, generally your risk for LE is low if only 1 or 2 nodes are removed. More nodes removed usually increases your risk of LE. And sometimes you're just unlucky. Just being aware that there is a risk and being vigilant can help. And not everyone experiences LE. Right now, removing 1-3 sentinel lymph nodes is considered good practice. Finding cancer in those nodes may change your treatments. You might want to consider reading Dr Susan Love's Breast Book to give you lots more information. There's so much to learn that it's hard to know where to start because you don't know what you don't know.
HUGS!
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thanks Peggy. I have seen this book referenced quite a few times....heading over to amazon right now! Holiday present for myself. It sounds like you did not have LE
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DagnyT, I have not. What is rather maddening is that my BS told me that she took 3 nodes but 2 more came along for the ride. No mention of LE. My new MO here in Spokane (I came from Michigan) said it doesn't matter how many the surgeon MEANT to take, I had 5 taken and I'm at risk. But no, so far so good! Make sure you get the latest version of Dr Love's book - I think it's 2015 or 2016. It's worth it!
HUGS!
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DagnyT, I had an LX & SNB (3nodes) & have very mild LE. My best advice is that you get an appt with an LEPT before your surgery to get baseline measurements of your arm. My BS didn't suggest that & it made it more difficult for my post-surgery LEPT to determine whether I had lymphedema when I experienced swelling after a flight & time spent walking in the heat. And look at (& follow) all the post-surgical LE precautions. Best of luck!
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DagnyT - I had LX & SNB, and like PontiacPeggy I was told 3 nodes but they got 5. I've had no LE and there was no mention of it either.
I had a numbness, feeling like rug burn, from elbow up under back of arm. That went away after about a month or so. Even the numb armpit is coming around, but slowly.
Its good you're aware of LE, but don't stress over it. Some who've had less nodes removed than me reported they got it. Its back to the saying, everyone is different. Best of luck on 12/28.
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I had 4 nodes out, and I got a mild case. Common sense takes care of it: no needles (except a cortisone shot for trigger thumb), tourniquets, or BP cuffs on the R arm (I wear a loose faux-Pandora medical alert bracelet); compression for workouts & any flight over 3 hrs (the doc said 4 but I'm taking no chances); long sleeves & gloves for berry-picking or any gardening involving soil or thorns; sunscreen & bug spray; warm gloves in cold weather; keeping that arm out of the whirlpool and limiting sauna & schvitz time to 5 min. I don't let my manicurist trim my cuticles on that hand, and I try to moisturize as much as I can. Also, avoiding kitchen burns & trying not to let my cats scratch that arm, even inadvertently. Not as onerous as it sounds--becomes second-nature after a while.
Pretty sure that in my case, obesity was the culprit. Not much you can do if you're already obese, but if you aren't, try to maintain (or if on endocrine therapy, to gain as little weight as possible.
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Hi Dagny. I had just one node removed and did not have LE. Some numbness and pain afterward is normal, so do ask how soon you can start some stretching exercises and which ones they recommend. I will keep you in my thoughts and I'm sure you'll be fine.
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Runor, so good to hear that the new lump turned out to be a benign cyst! On the Oncotype test, it's really very good at projecting risk as well as the merits of chemo. But it only tests the genes of the tumor itself. I think sometimes doctors recommend genetic testing if they think there may be family/genetic history to be aware of.
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Yes, there is a difference between genetic and genomic testing, and laypeople often confuse the two.
Genomic testing tests the genetic material of the tumor itself, after diagnosis and usually after surgery: OncotypeDX, MammaPrint, Prosigna, etc.in order to drive adjuvant treatment decisions (i.e., chemo for invasive breast cancer or radiation post-lumpectomy for DCIS).
Genetic testing, OTOH, tests the patient for mutations that are known to affect the probability of risk for various types of breast cancer (as well as colon, pancreatic, and melanoma), in order to drive surgical treatment decisions--even in patients who have not yet been diagnosed with any cancer but who have either family history &/or certain ethnicities prone to such mutations.
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DagnyT, I think part of the picture is to be proactive. I had 10 nodes taken. My MO was very insistent from the beginning that I see a LEPT and get measured. She wanted to be on top of it. I got a compression sleeve and started wearing it during exercise, even before any LE might show up. I've worn it pretty constantly during rads, since they were radiating my lymph nodes too, which makes them more likely to quit.
Like you, I find it a little overwhelming to think of this as a lifetime risk -- just another reminder that cancer is a new normal, not something you get over and then forget about -- but I do feel better knowing that there are things I can do to help minimise or delay any LE that might come. My MO and LEPT both say that once you notice swelling, the damage has been done. So I would encourage you to learn what you can, and to get a referral to a LEPT early. Feel empowered by being informed, and it may not be something you have to struggle with.
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Thank you everyone about information on the Oncotype. I was not aware of genetic vs genomic, now I am.
Dgny, I had only one node removed and I have lymphedema. It affects my arm, breast, armpit, side and ribs. Recently an effective exercise has helped immensely with the armpit, side and rib swelling. But the arm swelling and breast swelling are not helped by these same exercises and like others here, it is an issue of management. I do suggest you read posts of the LE forum, lots of information there.
I have the printed copies of my surgeons notes on all my surgeries. She says she wanted to take several nodes but there was only one, one lonely node available. Unhappy with this she went digging for more nodes. Her notes say that she investigated the first layer where the nodes should be but finding only one, she cut in deeper looking for more.I will never know for sure, but I think this deep excavating for nodes might be what messed me up, because with only one node gone I expected to be unaffected. But the surgical trauma to the area was maybe more than expected. She did tell me that she has never not been able to locate as many nodes as she wanted. But with me: One. Nothing she could see, nothing she could feel, nothing showed with the radioactive dye locator. She was not happy.
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Oh Runor, I'm so sorry she had to dig. Yes, you are going to feel the trauma more than if you might have if she had found a tidy little cluster within reach.
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Just saw this article and it definitely raised my eyebrows. Does it really work? Lymph Node Transplants Very interesting.
HUGS!
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Sometimes it does, Peggy--there are threads on the LE boards with posts by women who've tried it. (CTCA touts it in one of its commercials). But it's delicate and expensive microsurgery, and only for mild (Stage 1 and early 2) LE. Too risky for prevention of LE or in "subclinical" (Stage 0) LE. And it's usually limited to after mastectomy and/or ALND, usually not lumpectomy with just a few nodes after SNB. Not sure if insurance will even cover it. But nothing can repair skin that's already sclerosed, cracked, permanently stretched or otherwise damaged as a result of LE swelling.
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Sandy, I was sure you'd know all the info on this procedure. I did wonder about insurance coverage. It makes sense that it would be mostly done on women who've had a mastectomy and/or ALND. They are obviously at the most risk. I am not on the LE boards so hadn't heard of it.
HUGS!
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runor, oncotype Dx gives you risk of recurrence and whether chemo will be effective on your cancer. My genetic mutation increased my risks of new cancer not recurrence. I was tested because my sister had breast cancer in her 20's and my uncle had breast cancer in his 40's plus a couple aunts later in life.
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Thank you, Molly. I learn something new every day.
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Hi all!
I came to this site looking for some support and understanding. In November, after an incisional biopsy inside my left nipple, I found out I had a rare tumor that was in fact cancer. This tumor has many names..but commonly called Microcystic adnexal carcinoma. The thing about this tumor is that it’s a skin cancer tumor. But while it’s skin cancer because it’s in my breast, it’s being treated as breast cancer. On Monday last week, I had a lumpectomy and two lymph nodes removed. My lumpectomy involved removing my whole areola/ nipple. My surgeon sent out the tumor for a second look and I should hear those results soon. It is undetermined whether I will need further treatment and will need to meet with oncologist.
So while this is skin cancer and I have joined a great skin cancer support group, I feel I need more support from those whom have had lumpectomys.
It was very hard to see that most of my breast is gone and I have gone through a bit of a grieving process. I didn’t think it would impact me this much but it has. Just wanted to speak to those that can relate to all of this.
Thank you!
Libby
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HI Libby. Welcome and I totally see why you're wanting to be here with your breast injured like this. I hope you get good news from your oncology team. How is your physical recovery?
I guess one thing you may want to look at (if you haven't yet) is the lymphedema prevention threads on this board since you did have nodes removed...0 -
Ok, thank you! My recovery is going ok. Healing well. Yesterday, however I got some energy back and I think I over did it. Very sore today. I will look into the Lymphedema prevention group!
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Welcome Libby! There is a saying around here "just because you can doesn't mean you should". In other words don't overdo it just because you feel good! Ice and rest are your friends right now.
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Welcome, Libby. Sorry for the shock of needing a partial mastectomy (the official name for a lumpectomy) for what was actually a skin cancer. Hoping the nodes are negative and that because it's not technically a breast cancer, you'd need neither chemo nor radiation. (Do they even test such a tumor for hormone receptors, HER2 expression or genomics)? Echoing everyone else's advice to listen to your body--if it says "take it easy," then say "yes, ma'am."
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Not great news today. My Oncotype score came back a 19. My MO and my RO recommend chemo. Not aggressive chemo, but mild type, not lose all your hair.
I had body mapping & tatoos already done, was scheduled to start rads 12/26. If I accept her recommendation that will be cancelled. She's calling me tomorrow. (or I can wait until after Christmas, but I would have started rads by then)
She explained I have a 12% chance of reocurrance anywhere in my body. With chemo it will drop to 8%, with AI meds a drop to 6%.
Anyone similar? I'm 58 and otherwise totally healthy. She indicated low Onco was thru 17; 18-31 mid range.
The bottom line Q: how much is it worth to me to decrease the percentage of reocurrance?
What a day. What a year.
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Hi there Cindy. I really, truly, don't want to make you doubt your treatment plan but since you asked I thought I would share. I'm age 59, my Oncotype score was 18, and radiologists at both Georgetown and Johns Hopkins concurred that I did not need chemo. In talking to MD Anderson about a clinical trial I informally got the same advice from them. I just finished the recommended short course (three weeks) of radiation and will start tamoxifen on January 1. (Recommended over an AI for me because I have osteoporosis and I got a second opinion on that too.
) Now in my case I have no family history of breast cancer except a great-aunt, a tumor of just .7 cm, and a very high ER score of 95 percent. So you may be a bit different. But if you want a second opinion I suggest you get one. Happy to talk more if you want to PM me. You need to do whatever gives you the best peace of mind. My recurrence was projected at 11 percent.
Hope this helps.
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Thank you molly50 and ChiSandy for your reply. I started to take it a little easier..hard right before the holidays but I am. Hardest thing is this depression/lonely feeling! I never thought I would have a hard time bouncing back. Maybe over time this feeling goes away??
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Hi, LIbby. I can understand your feeling of loneliness since you had this rare tumor. But on this site you’ll get all the support you could ever want! It is hard at the holidays not to get caught up in all the frenzy - especially with three daughters. But try your hardest to listen to the sage advice of women like ChiSandy and PontiacPeggy who advised me me rest, rest, rest. Your body has been through major surgery and needs time to heal. We get tricked into feeling a tad better and then undo that progress by jumping in with both feet.
The surgical assault on your body is enough to cause exhaustion and depression. Throw in the anesthesia and it’s no wonder it takes us a while to recover. And that word - cancer - is enough to send most of us into a tailspin.
You’re doing the right thing by turning to this site. Lean on your skin cancer support group, as well. Allow your friends and family to take over many of the holiday tasks you would usually be doing. As each day goes by, you will feel just a bit stronger. I’m a big advocate of exercise - which would be a surprise to anyone who knows me. I discovered some great classes with a fabulous instructor. I went to classes throughout my treatment (except for the three weeks after my partial mastectomy). Haven’t shed a pound but I’m so much stronger. And it’s great for my mental and emotional health. Finding a walking buddy would be great, too.
Keep us posted on your progress. As PontiacPeggy would say, we’ve got you in our pocket!
MJ
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Cindy, I'd ask for a second opinion too. My tumor, stage IA, Grade 2, had exactly the same recurrence % stats as yours but an Oncotype of 16--the high end of low-risk, and my MO advised against chemo. 19 is the low end of intermediate-risk, textbook "gray area." You might want to ask about further genomic testing--MammaPrint or Prosigna, which results don't have an intermediate category, only high vs. low-risk. There were women here with Oncotypes of 20 who opted for chemo based on Prosigna, and one whose Oncotype was 21 but came back low-risk on MammaPrint.
Also, I'd be interested to know what that "mild-type" chemo is--never heard of one (except maybe oral, and those are usually for Stage IV) from which you could be predicted not to lose your hair without cold-capping (which is no walk in the park, costly and not 100% effective). The whole point of chemo is to kill rapidly-dividing cells, and it can't differentiate between cancer cells and normal fast-growing cells like bone marrow, oral mucosa or hair follicles.
Where are you being treated? I would be wary of a standalone private practice oncology clinic at which the doctors buy the chemo drugs in advance and have to (in effect) sell them to patients at a profit. (When you're a hammer, everything looks like a nail). That kind of thing happens far less often at major university-affiliated teaching hospitals at major regional medical centers. You have time to get a second opinion--that tumor didn't grow overnight.
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