Calling all TNs
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Re nips, - I had them done 2/22, using skin graft from upper thigh (panty line of left leg). I have an amazing ps, and he made them look so real that they can fool anyone! I am truly surprised.
Moreshoes, - If reconstruction is something that you want, get some opinions from reputable plastic surgeons rather than going by the radiologist's opinion!
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Hi ladies!
Just chiming in about the lumpectomy vs. mastectomy question. Of course, everyone should always fact-check with their own doctors, but I'll share my understanding.
There are two types of recurrence to worry about: local recurrence (i.e. getting another lump in a breast), and metastatic recurrence (which would put us in Stage 4, and would mean our breast cancer shows up in lungs, liver, bones, brain, etc). Actually, there is also regional recurrence, showing up in nodes, but let's forget that for a minute.
As far as metastatic recurrence goes, my understanding is that all studies have shown lumpectomy with radiation to be equivalent to mastectomy in terms of survival. There is NO benefit to mastectomy for this. If we are going to recur metastatically, it's because cancer cells already escaped our breast tumor through the lymph or blood systems, and those escapees are setting up shop in new organs. Neither lumpectomy nor Mastectomy will be able to get those rogue traveling cells back and surgically removed--it's too late (that will have to be the job of chemotherapy). There are still logical reasons that mastectomy is a better choice for certain people (they might have multi-focal lumps, or too big of a lump to get a good cosmetic result with lumpectomy, or it might be too close to the nipple or in a certain location that makes lumpectomy difficult/bad, or they might not be allowed to have radiation because they already had it there for a previous cancer and you can't radiate the same area twice, or they might be prone to get a new breast cancer if they are BRCA positive, etc). But if none of that applies to a person, then lumpectomy with radiation is absolutely equally as effective.
Then there is the risk of local recurrence. This is getting breast cancer again in the breast, but having it come from leftover cancer cells from your original breast cancer. This is usually a low percentage risk if you have radiation with your lumpectomy (and got clean margins) or if you have mastectomy. My RO told me that my risk of local recurrence is only about 3% (whereas, unfortunately, my risk of metastatic recurrence is much higher, 25%-50% since I had residual cancer left after my neoadjuvant chemo). But again, the radiation does a great job of killing off any leftover cells in the breast, and obviously in the case of mastectomy, most of the breast tissue is removed, so that works well, too. Mastectomy does not mean that you are more likely to have the cancer show up elsewhere like your liver or lung. But you can still recur locally, for example along your scar line, etc. They can't remove every last bit of breast tissue. I've heard it compared to trying to remove all of the peach flesh from peach skin--you just can't get absolutely 100% removed. But they certainly remove most of it, so you probably also only have about a 3% chance.
There is also a risk of a NEW primary breast cancer, locally in the breast (not a recurrence). This would be greatly minimized if you have mastectomy vs. lumpectomy, since the vast, vast majority of your breast tissue is gone. However, it still happens, even with mastectomy. My understanding of women (like Angelina Jolie) who have prophylactic mastectomies is that they don't absolutely eliminate their risk of breast cancer, but cut their risk by 90%. If you are genetically predisposed to breast cancer (i.e. are BRCA + or positive for one of the other breast cancer genes), going ahead with a mastectomy now would greatly reduce your reasonably high chance of having a future new breast cancer. But if you are BRCA negative, you probably are unlikely to ever get a new breast cancer (not much more likely than the average woman), so it probably doesn't make sense to have this be the reason you get a mastectomy.
But I do not believe that getting a mastectomy means you are more likely to metastatically recur. That would be a big deal, and a reason to avoid mastectomy, but I really never heard that.
As for me, I chose lumpectomy with radiation, because none of the reasons I mentioned above applied to me. My breast surgeon did an awesome job, and was able to make the incision right along the edge of the nipple (yikes! it sounded awful to me when she explained it, but it was a great option), and now you can't even see it! I'm so happy with her. You really can't tell there was surgery, the scar is so well disguised there. There is no indent or dimple, either. I think part of the reason is that she inserted a device called a "biozorb" (you can google), and it fills the space where the lump was, and so it sort of props up your skin, so from a cosmetic standpoint, the lumpectomy turned out to be no big deal at all! I had met with a plastic surgeon before my lumpectomy, just to understand options for him to fix anything I'd be unhappy with (and there are options such as fat grafting to help fill in any dimples people may end up with), but I won't end up needing to go see him now, which is terrific. I still have a scar from my SNB, but since it's under my arm, it doesn't bother me much. But my port scar annoys me the most, since it is in a pretty visible location. However, if I had any of the other factors that make mastectomy a better choice, I wouldn't have hesitated.
Gosh, re-reading this, I think it's kind of boring and a bit preachy! Sorry for that, I didn't mean for it to come across that way. I know everyone on here is so knowledgeable. Hopefully what I said is all accurate. Good luck everyone with your decisions.
Tulips
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Thank you for the info Tulips!
I saw my BS yesterday and that's almost spot on what she told me. I've decided to go for the lumpectomy and radiation after my chemo is finished. I'll also have my nodes removed, I have at least one positive from biopsy. I'm going to run all of this by my MO when I see her tomorrow to make sure everyone is on the same page.
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Thank you for sharing your stories.
i have also had lumpectomy on the left breast because my tumour was unifocal and far away from the nipple, had my left nodules removed. I had the right breast decreased in size too.
waiting to heal from surgery to start radiation but the healing process is taking too long, in two days, it will be a month since i had my surgery.
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Scotbird, when I had BC 24 years ago, thats what they told me for the type of cancer I had, that Lumpectomy was as good as an mx, though I had another dr recommend double mx, and now 24 years later I wonder if i'd had a double MX would I be facing cancer for the second time, though it's in the other breasts?
It's never easy to come to that decision I've decided on double mx this time. Done with them.
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Great info Tulip & great info on the nipple tattoos! I may go that route if I need a bmx.
I got the call today that I see the oncologist next Tuesday & we are starting chemo that same day!!!! He reviewed my file, slides, & talked to my other docs about me. I'm young & healthy and the oncos are crazy busy. I assume they'll do my dose vascular this first time since I haven't heard about a port. I don't know if I'll even get one. What did you guys have done?
Getting my hairs cut short on Thursday.
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Hi Twaz,
I'm glad things are moving along! I think it's quite common to get a port for ACT chemo, if that's what you'll be getting. I liked having a port. I certainly don't want to second-guess your docs, though
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I assume I'll get a port at some point. They are literally squeezing me in due to my TN status. No oncologist appointments at my hospital until the end of May! I'll take what I can get to kick cancer's butt!!
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Twaz, I have a port also. I had the port placed, had an echocardiogram, CT and bone scan the week before I started chemo.
Good to hear that things are getting moving for you.
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Another, so glad the nips are a success!
4everstrong, Hoping you can start rads before too long., But you are still ok time wise, don;t worry. What was your pathology after surgerY, Did you have a complete response to chemo?
Tulips, thanks so much for all the great info!
Thinking of you Cocker
Hugs to Ally too, always
And all the lovies here, sending you all my love
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Thank you to everyone who has shared their surgical decisions. My oncologist put my risk of recurrence around 7-10% with Lx/rads and 3% with bmx. Risk of new cancer is about 1% per year (so at the 10 year mark it would be at 10%). Obviously a bmx significantly reduced this risk. Survival rates are about the same. Choosing bmx doesn't lessen the risk of Mets. The thing the sits in the back of my mind is that at EVERY stage of testing prior to diagnosis, I was told to don't worry, it's probably nothing, you're too young, too healthy, etc, so while I find statistics helpful, they're just numbers that really have no bearing on my individual case. Nonetheless, here I am asking about statistics and percentages, LOL.
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This stuff is really confusing and scary and when you start looking at numbers, it really seems doable. But when you hear 80% of biopsies are negative and here I am, in the 20% considered low risk... ugh. You kind of start thinking numbers mean nothing.
Just read a bit of my report from my online chart. Unfortunately I am a grade 3.
I kind of thought it was odd that I was 2 and TN, since no one else seems to be. I guess that also explains why I'm being rushed into chemo ASAP. One other thing is that I was initially told my tumor is 1.2 cm, but in the report, it is .6 cm. I was biopsied at one hospital and then moved to another for treatment- it looks like the new hospital re-evaluated. Still have cancer. Damn.0 -
Hi Twaz! So sorry you had to land here but as you can see it's a great place for support and information. I was really struck by how booked you said the oncologists are by you! A friend of mine was diagnosed recently and waited nearly a month for her first appointment. Maybe I'm just hyper aware of BC now but it seems like a lot of younger women are getting this. Ugh.
Good luck with chemo. It's the last thing you want to be doing but you'll do great and likely be surprised at how tolerable it is. A long slog, sure, but you'll get through!
It's possible you are confusing the tissue sample size on your pathology report with your tumor size. I did the same thing. I was like whaddya mean my tumor is 2 cm? And now you say it's .8 cm.??
Thanks to everyone else for the surgery discussion. Very helpful. Perfect timing for me! One more AC and then on to surgery on 5/11.
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Feeling a new "knot" in my left reconstructed breast and I have appointment with BS tomorrow at 9am. I'm praying that it is just fat necrosis again, but I am paralyzed sitting at my desk. So afraid. I don't want to tell my husband anything because he will worry too much. After seeing doctor I will get an ultrasound...I will let you ladies know as soon as I know something. Just saw my MO on Friday and she didn't do an exam, but did tell me since I am coming up on my 3 year anniversary of TNBC that I should celebrate. She mentioned that if I were to have a recurrence it happens in the first 3 years.
I'm frightened
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Thinking of you and praying for fat necrosis Shorfi! Keep us posted. (((((HUGS))))
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Prayers Shorfi!!!! Fat necrosis & time to celebrate 3 years!!!!!
Xoxo
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This is...I think my 4th or 5th time with this...and it has always been fat necrosis. I have been having ultrasound for the past 1 1/2 every 6 months to monitor this area, but I think this is something new. I can't remember for the life of me. I'm am praying so hard that it is the spot they have been looking at.
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sorry Ive been MIA! Had a bad 3rd AC and then right after my 4th AC we had the kid's spring break last week. Finally have the house to myself and feeling "new normal" and starting Taxol (12 weekly) on Friday morning.
SO glad I came here today. The recent topic of % for lumpectomy vs mastectomy is SPOT ON PERFECT for today. Just got off the phone with my Step Mom and she called me after meeting with her GYN for her yearly. She decided to discuss my situation with him (I am in Michigan and she is in Georgia). SO he knows NOTHING about me. BUT since my mother died/cancer before 40 and despite the genetic testing being negative he feels it's still genetic (I agree there) but that is where my agreement ends. ANYHOO he absolutely would insist that I have a double MX because radiation is HORRIBLE in his opinion and ruins your skin. And it won't come back if I have a MX LOL hahahaha he is so funny. Then went on to say stuff about ovaries and hormones after menopause and I won't be able to take hormones or therapies so I won't be able to have sex bc it will be too painful etc. UM dumba$$ I am triple negative my ovaries didn't cause my cancer. So even if I had removed my ovaries with my hysterectomy a few years ago at 38 --wouldn't have mattered--and then what I wouldn't be able to have sex now because I wouldn't be able to use the current therapies either..... ok VENT over
I met with my surgeon on Monday. She couldn't see any evidence of my tumor post AC treatment!!!!! BUT does anyone know how large a tumor needs to be to show up on an Ultrasound?? Surgery in August.
I was informed that I could have reduction/lift with my lumpectomy free of charge (met my yearly insurance OOP by February!). I have been wanting these HOT and HEAVY 44D's smaller and perky for years. I hate the underboob sweat!!!! And while in NO air conditioning Germany I started having yeast/fungal infections in the crease. SO I meet with the plastic surgeon next Thursday!!! I will ask her personal opinion and at least see what she would plan if I chose MX and what that would entail etc...but I am comfortable with Lump and Rads % numbers. I don't see my Dad or StepMom volunteering to come up her for a month plus to help me recover from the additional major surgery(s) to help with the house and take care of an 8&10 yr old while I am out of commission either
so much for a nice relaxing afternoon
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great exchange here.
@ shorfi .. Cross fingers and prayers the New lump found isnt anything... try and relax nothing we can do now apart from hoping for the good and thinking positively!!
As for me. I am still waiting to heal from surgery eventhough it's been a month since i had my surgery. . The healing process is way too slow. The report is out. . No trace of cancer in thé breast nor in the nodes. Pathologic complete response. . Thats how they call it.
I wonder if i would add more chemotherapy .. i Will ask my oncologist this friday when i Will see him.
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Thanks Tulips and everyone else for all the interesting info. Makes me realise how uninformed I am, but at least I now have better list of questions for my BS. Decisions decisions! X
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Shorfi, - you are so on top of things, - I bet this will be more fat nec or scar tissue!
I know exactly how nervous you are though, - I have an enlarged node on my neck by collarbone and it has been so unnerving! I watched it for a couple of weeks, and of course kept feeling it, so it is so sensitive now. I had been holding out for my onc appt next week, but after a few panic attacks, called yesterday to try to get in sooner. No appts avail, so I went to my internist who poked and pressed, and said it feels ok to him, but to come back in 2 weeks. Told him I am seeing onc Thurs. (Of course, after I got home from internist, the oncs office called and said they could see me this AM, - but I said I'll wait til my reg appt.)
Does this fear ever end?
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Hi all,
My fingers are crossed for good news for everyone (fat necrosis, normal lymph node swelling, swifter healing, etc). And great news on the pCR, 4ever!
I had a quick question about radiated skin, since HausFrau's stepmom's gyn brought it up ;-). He said that radiation ruins your skin. I've been happy to see that my radiated skin looks EXACTLY like the rest of my skin (yes, sadly, pale and freckly, ha ha ha). You would never, ever know where my skin was radiated. It does not feel dryer, or anything. It very quickly reverted to its normal color (it had turned quite red during radiation, then faded to a tan the week after, and within a month, you could no longer guess where it happened). I am just curious if I'm lucky, or if this is an overblown concern. I have a few friends who also had radiation, and not a single one of them would say they have permanent damage or visible changes to that skin. If skin effects are rare, I wouldn't want people to be scared off of radiation for no reason!
(I know there are some possible long-term risks with radiation, although rare, such as secondary cancers, and the possibility of the radiation hitting heart and lungs, although I think with improved techniques this is exceptionally rare nowadays, etc). But the skin concern seems weird to me. Just curious if anyone has had long-term obvious damage to their skin?
Tulips--who is "celebrating" her 1 year cancerversary today....I was diagnosed 4/13/15. Not sure how I feel about it! I had a busy day, and since I'm still doing more chemo (Xeloda now), it's not really behind me, so I didn't quite feel like going out to dinner or anything. Now wondering if I should dash off for a drink with my husband or something....although the idea of just going to bed early sounds more appealing ;-)
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Tulips, - thank you for crossing fingers for all of us!
I had radiation in 2001, and my skin was soon fine, all redness gone, and looked as though I'd never had rads. However, years later when I had bmx, the radiated skin caused some issues with reconstruction. ( My ps was well prepared for that though, and tried various approaches until he found what worked best! )
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Hello all. New here and glad I found you. After a minimal of reading I'm finding everything I've been going through is normal. Yeah!
51 years old, married 30 years this August. 2 daughters, 25 and 21. Found mine December 30th. Diagnosed January 11th. IBC, TN, BRCA2+. Finished AC and am half way through Taxol w/Carboplatin triweekly. Surgery expected in July double mastectomy with ovaries removed, this is because of the BRCA2+. Followed by 6 weeks of radiation. Reconstuction a year later after a definite no reoccurance.
Its a shitty hand to be dealt, but I have a great support system. Lost my mother to this very same disease 12 years ago this month. I plan on not being the same statistic.
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shorfi sending prayers for fat necrosis.
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Just a quick post as its bedtime.
Shorfi praying for fat necrosis. Sending huge big hugs that all will be well. Will be in your pocket for really good news.
Mike welcome back from Florida. I was getting worried you were going to stay there!!!.
More tomorrow ladies as very tired. Prayers and hugs to all going through treatment or are worried.
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Milwmama...Welcome. We're all here for you. Sorry about your mom. Wishing you the best as you work towards good health on this BC journey.
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well i had another birthday so that's fun. 3.5 years from diagnosis. Back is still hurting but im monitoring. It feels ok in morning when i get up but by lunch it starts to hurt then by dinner it hurts more. Im hoping its just pulled muscle, ive never had one so don't have anything to compare to. Im at about 5 weeks of this. I dont want to have it checked but thinking next week i might make an appt with doc.
Shorfi, hoping for fat necrosis.
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Welcome to all the newbies. So sorry you have to be here but it's a great place to be!
4ever, congrats on the pCR!!!!
Jen, I'm sorry you're still having the back pain. I don't know what kind of mets besides bone mets that would cause back pain BUT my onc told me that it's extremely rare for TN to go to the bones. A girl in my support group also said her Onc told her TN doesn't go to the bones. Here's to hoping you just have a pulled muscle! I pulled one in my stomach in high school when I tried a taekwondo class, and it hurt for a really long time! I never went back to the class! LOL!! I have my yearly checkup with my PCP this afternoon and I'm nervous about that. She usually does a CBC and Comprehensive Metabolic Panel and I'm so scared my liver enzymes will be elevated, among other thing's. I've been having pain in my right mid chest and side area and upper abdominal since October. My Oncologist says it sounds like post mastectomy pain syndrome, but my mind is screaming liver mets. It hasn't gotten any worse since October. I've had it even longer than that according to my husband and I'm still here so I hope my Onc is correct!! I hate the anxiety I have! Ugh
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Tulips, I had radiation on both breasts. The skin looks fine. The only thing is that while before I never had problem with this, sometimes i get allergic reaction on that area.
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