Calling all TNs

placid44

Lawyer180,

Triple negatives underage 45 are among the only ones for whom there is an increased risk of contraleral breast cancer/other side. As you probably know, another instance is braca+. I had bilateral mastectomy w/ radiation on the right side.

NavyMom

Hello to all of the new ladies that have found the TN thread. And congrats to those passing those milestones big and small.

Lawyer, my breast surgeon gave me options when she gave me my dx of BC. At the time I knew nothing of TN or stage or grade. I also did not know if I was BRCA + or if I had any positive nodes.

It took me 24 hours to think about what type of surgery I wanted. I chose BMX. BUT it is not the right choice for everyone. And statistics say that survival rates are the same vs lumpectomy or UMX. So do what feels right for you and only YOU. My husband was supportive of whatever I decided to do and so was my surgeon. My reconstruction went well and I am happy with the results. I knew that my new breasts would be numb...sad but true. And I do have(still) some armpit pain on the side that the nodes were removed.

Also my Ki-67 =45% and p53 =53%. I am almost 7 years from diagnosis and remain cancer free.

Wishing everyone going through treatment minimal side effects and many good people supporting and helping you to get what you need.

Love to you all.

LifeAloft

Lawyer180, good timing for your question, I actually meet with my surgeon tomorrow to go over my options. I'm 45, 4.5x4cm tumor that has thankfully shrunk to the point that I can't feel it anymore half way through chemo. I also have one node positive that we know of.

The first surgeon I met with said BMX, the second, who I'm seeing again tomorrow said LX as long as we could get the tumor to shrink. I'm leaning toward the lumpectomy, everything I've read says with radiation it's the same as having a mastectomy. I'll be having radiation no matter what due to the node. BMX does not guarantee no recurrence, etc. Honestly, I don't want to deal with major surgery and reconstruction, I'm a single mom who has to get her butt back to work. But like everyone else said, everyone has their reasons for the choices they make. I'll be interested to see what my surgeon has to say. Best wishes to you

Cathytoo

Ki67 ???? I'm feeling somewhat out of touch here. What is this exactly and when is testing done? I had a lumpectomy, sentinel node resection and 4 TC infusions. NO ONE HAS YET TO MENTION THIS TESTING TO ME!!!

greenae

Cath

Ki67 is the rate of cell growth, the % of cells dividing. Yoursmay be in your path report. TNBC often has a high Ki67, mine was 90%. My MO said rapidly dividing cells respond better to chemo, so I try to look at a high Ki67 as maybe a good thing? (Ugh). She also said it can be unreliable, and not all docs agree upon the use of the results, so it is possible yours was not tested?Anyway, you can read about it on BCO, just search Rate of Cell Growth---and try to not worry bout it. (I put my path report in my attic, so I would stop reading it!)

Hugs! Arlene

Cathytoo

Greenae......good idea, Arlene, to put the damn path report in the attic‼️ I haven't read mine in a while, but I don't think the K167 was mentioned. I would imagine mine would be high also. I like that maybe Chemo works better on faster dividing cells. My tumor was a mix of invasive and non-invasive cells. The slides had to be sent to three labs until it was finally determined to treat the tumor as invasive. I was TN from the core biopsy, so I never understood why it would be s good thing if the tumor was DCIS. I would still need the same treatment because of the TN. But, my surgeon was only interested in invasive vs non. Anyway we can think ourselves crazy. Better not to think at all. Thanks for your explanation

greenae

Cath,

Check out our "signatures" below. Diagnoses almost the same. Believe me, i Get it! I hated knowing my Ki67 was so high... But I am "over" it... And just thinking the TC KILLED 'Em ALL

Trisha-Anne

Lawyer, I had triple positive bc five and a half years ago, and wanted a bmx then, but my bs wouldn't do it. He said it wasn't necessary to remove a healthy breast. Now I'm fighting bc again, this time triple negative, and I was so, so angry at dx. All I could think of was that I wouldn't be in this position if I'd had both off when I wanted it.

I realise that this bc is completely different to what I had over five years ago, but I would get very anxious at every mammo and u/s wondering if it had come back in the other breast. If I had my time over again I would have insisted on the bmx, or found a surgeon who would listen to me.

Shopgal2

hi lawyer, I was 44 at dx last May under 1cm mass with a ki67 of 35, node negative. I have family history of bc; mom and grandmom who were not tn. I tested negative for brca. I chose lumpectomy and rads since my cancer was small and I had 40 DD breasts. It was hard to come to that decision as I had to make the choice twice when I needed a reexcision after my initial surgery. Right after I regretted not having a bmx when I found out I needed a reexcision and again after I saw the cosmetic appearance of my breast after reexcision. Now months later after treatment I was glad I had rads. I feel with tn the extra treatment of rads was helpful. My breasts will eventually need a reduction and lift due to my recent 40 lb weight loss since chemo ended in December. I have made peace with my decision of lumpectomy and hope that I will not have a reoccurrence. Hope this helps.

Twaz

Welcome Lawyer. I'm the new girl around here- dx'ed a week ago. I appreciate this conversation because it gives perspective on what I face a few months down the road.

I FINALLY met with a doctor today. I was only diagnosed a week ago, but it was the longest week ever. Unfortunately the waiting isn't over, but I finally feel like I have some answers to what I'm facing.

According to the ultrasound, the tumor is 1.2 cm. I am working with a teaching hospital and had two doctors and a student looking for the lump today. All three had trouble finding it and said I was really lucky that I found it! Like most of you, chemo will be before surgery. The surgery is where things are up in the air. I had a boob job 15 years ago and time plus two babies = jacked up boobs. One implant sags, the other one, where the cancer is, the implant has migrated to the top of my chest. Honestly, I had no clue how off they were! Put on a bra and a shirt and they look fine, so I never worried about it. My surgeon thinks I'll be a good candidate for a lumpectomy, but because of the implant issue, we can probably work a reconstruction in as well. BUT, all this depends ultimately on more test results and how I come out on the genetics test. I meet with a plastic surgeon on the 20th.

MRI is next Wednesday. Another week of waiting. Ugh. I don't have an oncologist on my case yet, but the surgeon is trying to pull some strings. She thinks I can start chemo as soon as 2-3 weeks from now.

One more thing that a survivor I met with brought up-- nipple reconstruction. She honestly wishes she wouldn't have bothered. She has me thinking on that one. What are your thoughts?

jenjenl

I did the 3D nipple tattoo and i really like the way it came out!

Edited to add - mine were done in MD at Vinnies shop but by Trent. Once they were done I looked at myself more positive and it made my mounds of fat look like boobs!

placid44

I love my nipple tattos done by Vinnie Myers. (You'll hear a lot about him). My plastic surgeon recommended against nipple reconstruction because there can be issues w blood supply/complications. Perhaps others have had a good experience; don't know

NavyMom

I also did 3D nipple tattoos. I waited over a year after my exchange surgery. I chose a cosmetic tattoo artist about 90 miles from my home. 3 sessions about 90 minutes each. No pain at all. I am happy with the results and makes looking in the mirror at my scarred up chest so much easier.

ScotBird

Hi all, interesting topic thanks lawyer - it was also my instinct to have everything removed, and I was surprised to hear that outcomes for recurrence are the same for LX vs MX. From what I have understood, even if all breast tissue is removed, recurrence occurs at the same rate, but as it can't recur in the breast it recurs in another place like skin, chest wall or lung. When I heard this it did change my view, but it was only anecdotal, I haven't read any papers on the subject. Another thing to consider it what you will look like afterwards. In early days I thought I wouldn't care how I looked, but there are some excellent photos on this site and also there is a other site which think is called breast free which discusses these issues and makes it more real. I haven't made my decision yet.

MoreShoes

ScotBird, it's very interesting what you're saying about LX vs MX. Do you know where I can find more information about the subject? Friday is the CT scan and MRI and next week I'll hear if I have an option. In my case BMX would be the only logical option and according to the radiologist it's going to be almost impossible to reconstruct.

I'm mostly lurking here.I just finished chemo and wait for the tests to see if the chemo worked.

anotherNYCGirl

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!

TulipsAndDaffodils

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

LifeAloft

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.

4everStrong

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.

Valstim52

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.

Twaz

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.

placid44

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

Twaz

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!!

LifeAloft

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.

Meadow

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

lawyer180

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.

Twaz

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.

Angtee15

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.

shorfi

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

Luvmydobies

Thinking of you and praying for fat necrosis Shorfi! Keep us posted. (((((HUGS))))