Calling all TNs
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hi, everyone, I was diagnosed on 11/04/13 as IDC , 1.5 cm, stage 1, TNBC, 0/5 nodes, did lumpectomy in November, started chemo on December, 4X AC, every two weeks, 12X taxol weekly. I just had my first Taxol today and it seems to be easier than AC - fingers crossed. I am still trying to learn and I am so glad to find you here.
I went to see a radiology oncologist today and find myself more confused about all the choices. I was planning to do BMX after chemo to reduce risk of recurrence. I have small kids and want to do my best in the treatment. What he told me is that lumpectomy + whole breast radiation offered the same overall survival as BMX. BMX may have 2-3% lower local recurrence but the overall survival is the same. I am a little depressed to think about what would be the better option as this time. Any suggestions? Thanks!
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Thanks Cocker
Last update before going to bed. Bub is off of the ventilator, got a little nauseated but they have that under control and he is resting. She (nurse) said that this was good with it being just 4 hours since getting him back there. Praise the Lord.
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Great news StupidBoob, I lost my brother a couple of years ago and I am realllllly praying for yours, so great news. J4DC glad you found us, sorry you have to be here. I am fairly new too and have not had surgery yet myself. I will be making those same decisions soon. I am still up in the air and will probably be dependent a lot on the surgeon and Onc recomendations. Good luck to you.
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Stupidboob - so glad your brother's surgery went well. I'm sending him healing vibes so his recovery will be just as successful.
Inspired - its good to know they start counting from surgery to tx, not from dx to tx. That sounds much more encouraging!
Fighter - thinking of you. Be sure to update us when you're able.
Titan - I'll be waiting for the leftovers!
J4DC - so sorry you're here but glad you found this forum. You'll find plenty of support, caring and knowledge here. I wish I could give you help with your decision. Because of BRCA1, the decision was pretty much made for me, that a bmx would give me the best chance for survival. Good luck with your decision.
Kathy - I'm glad your mom was discharged so she could go back "home." I'll bet she's resting more comfortably with peace of mind to be in familiar surroundings. I admire your strength in caring for her at the same time you're dealing with all this BC crap.
Annie - be sure to let us know what your BS says about retesting you. With all the technology now, it's hard to believe they can't provide more conclusive results.
Thinking of you all and hoping you enjoy the day! Lisa
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Hi, all. I have triple-neg, don't know all the abbreviations yet, I guess. Just found out 2 weeks ago I have IDC, 2 days ago found out it was trip-neg. It shocked me, for some reason I assumed I would have the hormone-dependent cancer, I guess because several ladies I know had it. They told me of their experiences, I figured I knew somewhat what to expect; now it's all out the window.
I am 61, had normal mammogram in Sept. 2013, had a normal physical-gyno hands-on exam in December 2013. Nothing, nothing. In the later part of January I noticed a breast pain, when I investigated the pain I found a large-ish lump in my right breast. I have since been told it is about 3 cm. Also it's not a round smooth lump but a squashy lump with fingers going out, (my scientific interpretation!)
I have a couple questions: maybe someone has insight I would be interested to hear. When I thought I had the hormone-dependent (respondent?) type of cancer, I was going with lumpectomy. Now that I know I have a more aggressive unevenly shaped tumor, and I have small breasts anyway, I am thinking mastectomy. Any insight there? Also, my oncologist is weighing whether or not to do chemo first, and then surgery, to shrink the tumor. My instinct is to just get rid of it. My surgeon has a stellar reputation and I'm thinking that getting rid of this painful lump that makes me feel like someone hit me in the chest would be better just gone, instead of messing with it. I am aware I will need chemo at some point. Any insights on the neo-adjuvent chemotherapy? I have had a mammogram, 2 ultrasounds, a biopsy, an MRI so I think the docs are armed with a lot of information. I do plan on speaking with the surgeon and oncologist on Monday to get going with things as soon as possible, but welcome any thoughts.
I am so glad I found this forum, so nice to be informed of everyone's experiences! Thank you!
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maryna8,
I was exactly the same age at diagnosis. Found 4 smallish tumors, tnbc, one of which changed to 30% hormone positive following surgery. I had chemo first and I'm glad I did. It gave me a chance to experience a taste of what I would have to look forward to
if I had a recurrence. Because tnbc is so responsive to chemo it made sense to me too that the sooner those cancer cells are blasted out of my whole system, the better. Surgery is local therapy; chemo is systemic. I'm glad I got chemo out of the way first. My bilateral mastectomy was a piece of cake afterward. I did gentle yoga during chemo and had a great range of motion after surgery. Bilateral M does not increase the overall survival risk but does prevent 98% of getting it in the other breast. Also by doing this I was able to avoid radiation, a treatment that may be helpful down the road if cancer recurs.Finally, they can estimate how complete a response you have to chemo if you do the surgery after the chemo. That was important data to me. If you have surgery first, you can't get that data.
The downside to me was that with or without recon if you get a mastectomy you will not have sexual feelings in your breasts and of course it is a more extensive surgery with all the risks that go with that.
Having said all this, it is truly a personal decision. We're all behind you, whichever choice you make. Hang in there. This deciding is one of the most stressful parts of the whole process.
Hugs,
Peggy
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Cocker - not to worry, we only have black sheep in this family. Loved the story about the old gent!
Great news Stupidboob! Prayers still coming.
Journey - thank you for you kind words. I am really struggling right now with the decision of whether or not to bring Mom home. (Her pneumonia came back less than two weeks after she stopped antibiotics, so may be safer in NH) Finding good help to do home care is not easy. I'm really struggling with this decision.
Maryna8 and J4Dc - sorry you've had to join us but welcome. The decision between MX and LX is one we have all struggled with. One question is, have either of you been BRCA tested yet? If you are positive for the BRCA 1 or 2 gene, it may sway your decision one way or the other.
The one advantage of having your chemo first (neoadjuvant) is that your doctors can see if the chemo is shrinking your tumor.
This is just my personal experience and please remember that hindsight is 20/20. In hindsight, I wish I had insisted on a MX and a total Level 1 and 2 lymph node removal ( I don't know if my surgeon would have even agreed to do that at my stage of disease and because of the risk of lymphedema) My Sentinal Node biopsy said that my lymph nodes were clear. 9 months (actually 6 months, diagnosis of the recurrence was delayed) after treatment 3 cancerous lymph nodes were found in my sub pectoral region. They have been very honest in saying that they may have been there all along and missed by the Sentinal Node (SN) biopsy.
The reason I don't want you to knee jerk and lean to MX is because of how cancer travels. It travels through both the lymphatics and through blood. So MX in itself is not the whole answer. It's chemo and radiation that hunt the bastards down and kill them. The statistics do show that the survival rates are almost the same for MX and LX.
As others are gonna tell you, it's a personal decision, and there's no right or wrong.
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Thanks, Peggy, for sharing your experience. These are such tough decisions! I had my decision made until 2 days ago, and hadn't heard anything about neoadjuvent before then. Hard to wrap my mind around it, my mind feels like a squirrel in a cage. I was going to go to the memorial service today of the uncle of a dear friend, and completely forgot about it even though I talked about it yesterday with another friend. Ugh! It's over now, so I guess I will make mea culpas later.
My oncologist said another good thing about chemo before surgery is that it can shrink a tumor enough to make a lumpectomy more viable in a small breast. But a radiology doc told me yesterday in his opinion a mastectomy is the only way to go, just the safest route. Although the cancer can come back anywhere, it seems. Kind of a roll of the dice.
Thanks for the support, once I make my mind up I know I will feel better!
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Hi, Kathrynn.
I have not been gene-tested to my knowledge. From what I have read it takes a month to get results, I don't really want to wait a month to get the ball rolling on something. It would be good to do for other family members' sake as well as our own, though. I'm sure it will be suggested at some point. Right now my oncologist is thinking moving forward as quickly as possible, which is fine with me. Just don't know what direction yet. He was speaking with the surgeon over the last couple of days, I will probably learn Monday in what direction they are leaning in my case. Here's an interesting fact: cancer doesn't grow on weekends!! It must not, because everybody that tests you and works with you through the week is off, so I assume the cancer is off too! Haha, bad joke. Seriously, I don't like weekends anymore.
Thanks for your input, you have all been thru so much! Question: why does it seem that many of the women here have had LX and then later MX? Recurrence or just cautionary? Or both, probably? Haven't had time yet to spend as much time as I'd like here, trying to get some things squared away.
Talk to you soon.
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HI Maryna8,
I had a lx in Dec 2004 and then an mx in 2013 due to recurrence but my recurrence was on the right breast where the first was on the left with DCIS. This time around it is TNBC. I often wonder if I had just taken care of it all back in 2004 if I would be in this situation. You just never know. Good luck with your decisions - you've found the right place to ask questions and the people on here are all so wonderful and knowledgeable.
LPBoston
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Hi Mary and J4DC - I sent you each a PM with information and insight as to how I made my decision and what was going through my mind at the time of diagnosis. Because my post would have been a little long I sent it in a PM - and I also included other information regarding additional medical information.
Glad you found this forum - best wishes to the both of you!
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Maryna8 - I think most of us have been where you are - the worry that for every day that passes, hateful cancer cells are spreading and treatment to kill them is moving too slowly. I talked to my MO & BS about why they werent in more of a hurry to get things started. I was going crazy! They both assured me cancer doesn't grow that fast. Since then, I've developed a little patience but even now, when i feel like they may not have my best interests in their tx plan, i'm all over them! Except on weekends...lol
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Hi, journey! Seems to me the cancer is fast; it wasn't there in Dec. when my gyno examined my breasts, and it was there in January. I am struggling with decisions. I was interested to see that you had tissue expanders, and reconstruction about a year after surgery. Can you explain that if you have time? How do you have the reconstruction a year later, and how did it go for you?
Thanks! Talk soon, Marynat8
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It looks like Journey had a mastectomy with tissue expander done at the same time and then chemo. I had the same process too. I had a BMX on Jan 4th - and on this surgery the PS was also there with the BS, and that is when they put in the tissue expanders. Surgery time was about 6 1/2 hours (they booked 8 hours, but didn't need that long). The expanders resemble implants. Then every couple of weeks the PS fills the expanders inserting a needle into a reservoir on the expander. It doesn't hurt, as after the BMX you lose a lot of sensation in the breast area. My PS did the fills in between my chemo cycles, so it was never uncomfortable. I was done with my expansion before chemo ended, so I just had to wait for 3 weeks after final chemo to do the breast implant exchange. They had me wait for 3 weeks after chemo to make sure counts were strong for exchange. Exchange surgery is a simpler and shorter procedure (65 minutes), and recovery very short ... 24 hours on Tylenol and that was about it. Some lifting restrictions for about 3 weeks.
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Hi everyone,
I too just read the article about early treatment and for me it was exactly 100 days because I have to have a second surgery and I was told that my chemo was delayed to the very possible last day that they were comfortable holding off treatment. I am a research sponge, I want to find, read and absorb any and all research related to my cancer, treatment, etc. Perhaps it's my neurotic way of maintaining some sort of control - even if it is my awareness.
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Hi ladies. LX or MX. I think the word 'shrink' is what would put the wind up me. I didn't want it to shrink, I wanted it gone and as soon as possible. If they could have guaranteed it would eradicate the cancer before surgery I would have had it but shrink - no. I just wanted it out and the sooner the better that's why I had a MX then chemo and rads. In hindsight I wish had, had a BMX but purely because I don't like being lopsided, although hindsight again, I also wouldn't have to worry about getting it in the other breast at some later date although cancer does not spread to the other breast. If you do get it in the other breast later on it's just another crap shoot. I didn't mind waiting for my onco to come back from holiday to start chemo once the breast was gone because all my scans, tests and MRI said nothing at all was showing after surgery.
I think once you have collected all your information Maryna8 you will make the decision that suits you.
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Mary, J4DC and All Newbies:
In addition to our help, you can also ask a question to the team of doctors at John Hopkins Breast Center. I've done it a few times, and they are very good and extremely fast on responses. Sometimes in as little as an hour, always less than a day. I've asked their advice before on a few things relating to my specific case.
Here is the link. You can select what type of question from the choices, i.e: Pathology/Treamtent/etc.
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Cocker, are you still having problems with a boil? I think you may have a Bartholin's cyst. They can be quite large and painful. I went to a gynocologist when I had one about 20 years ago. I can't remember if she gave me anything or tried to drain it. I do remember she told me to put warm moist compresses on it (clean washcloth soaked in hot water). I did that for several hours and it drained spontaneously. Huge instant relief! Hope that helps.
I'm three days out from my surgery and starting to feel human again. I had an ALND (left), lumpectomy (left), subpectoral implant removal (both), port removal (right); I have three drains.
Pain is okay. With all the scraping to remove the capsules from the implant, I feel like pain is closer to a Mx than an Lx. It doesn't matter. I can already see some improvement.
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I hear you, cocker! My instinct is to cut it out, get rid of it, before it does anything else! I will talk to docs tomorrow, but I am reading a lot of stuff. There just doesn't seem to be anything weighing heavily in either direction. Seems that surgery first, followed quickly by chemo does just as well as chemo first followed by surgery. I was leaning toward LX till I got the TNBC diagnosis, now leaning toward MX, and thinking about having both MX. Studies seem to show that if cancer does recur, it is not necessarily in a breast, so in that case it doesn't seem to make much difference if one keeps the unaffected breast or not. Except for, as you mention, the lopsided aspect. On the other hand, if one keeps one breast, routine mammos will be in order, and my cancer was not found by a routine mammogram. Popped up in between. Yes, I will decide, but it sure is hard work!! What a weekend, phew!
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Simplelife - very happy to hear everything is going well and you are feeling better
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One of the main reasons I went for neoadjuvant chemo immediately with the issue of a MX or LX to be decided afterwards was because I had several lymph nodes showing up in scans with cancer, and with cancer cells possibly already percolating throughout my body, I wanted the cancer killed first thing. With a fast MX or LX, the surgeon probably would have had to remove all those nodes, leaving me with a very good prospect of permanent lymphedema. And any floating cancer cells would have another month (or more if the surgery has complications) to colonize other organs or my bones. By going for the chemo first before I decided on an MX or LX, not only was the cancer killed in the nodes, and probably any floaters as well, but it also happily did shrink my two lumps, originally totaling 5cm (50mm) down to just one tiny lump of 3mm. It gave me the chance to opt for an LX, which turned out to have wide clear margins, and a now-clear SNB from just the one node removed for testing. And I was out running errands the next day, just feeling a little achy. I believe this was a good deal for me, after I added the nodes and distant cancer cells floating around into the decision.
We all have to make our own choices based on what we feel is best for us; our situations are all different. Best of luck whichever way you all decide.
Hugs,
Carol
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Mary - it does sound like your cancer appeared quickly and had that been my experience, I would have pushed hard to get something going. Inspired's response is pretty much what happened with me. I had BMX surgery during which tissue expanders were put in. Once I healed sufficiently, I started chemo and went to PS for expander fills. After chemo, I had 33 rads and once my PS thought my skin and underlying tissue had healed, I had the expanders taken out and implants put in. I scheduled the implant surgery at the same time of my ooph; I'm so glad I scheduled the ooph so soon - one ovary contained cancer cells!
I HATE CANCER!!
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That is really interesting, it's amazing what they can do! Sure sounds like a long surgery, but then like someone said, you are sleeping anyway. I am glad you are so happy with it, and without a nipple!
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Journey and Encyclias, my MRI showed no cancer in the lymph nodes, I hope I can count on that being true. I will speak to my onc and surgeon tomorrow and hear what they say and make my decision. I know what I want to do already, but I want to hear what they have to say.
I am convinced (unless the gene test shows otherwise) that stress is a cancer-causer, I have been living on stress for a while. Anyone agree?
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I was on chemo before I knew what was happening practically. I was told my cancer at 5 centimeters was too large to operate. It has shrank an phenomenal amount now. It had grown from the 2 centimeters at my biopsy. It was very fast growing. I am almost glad of the chemo in a way it has given me a chance to catch my breath and realize I have cancer. I guess. Sometimes I think I am still making peace with it. I still feel like I want the BMX but I am not sure. I have now read where NC makes the Insurance make you equitable on both sides no matter what you choose and that was something I was worried about. I would hate to have to wear a prosthesis on one side all the time if I had a lumpectomy. I am very large breasted and am not happy with it.
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I'm triple negative and was just looking to see is anyone else was doing 6 rounds of TAC chemo. It seems like most are doing 4 rounds of AC and then many rounds of taxol
I go for round #4 of TAC tomorrow
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TekWriter, I believe that's a national law. I had the bc at one spot in the right breast, but I did the BMX because I could!
LeeAlice, chemo regimens are administered based on risk assessment of the individual patient, including pathology report- so it could be that your risk is estimated at a different number than that of someone who had the other chemo schedule that you mentioned. If you wanted you can download this manual and see what the preferred treatments are for your particular case. Also, you can ask the experts at the John Hopkins website (for free) for extra reassurance. (I posted the link a few posts back). All in all, I've seen many women on here with all sorts of different treatment plans, and the thing to remember is that your doctor has analyzed your risk and calculated exactly what they feel would help you.
I had something completely different than the ACT or AC+T cocktails, I had CT.
Link to Download the: NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines)® Breast Cancer
http://infoonco.es/wp-content/uploads/2011/10/breast_cancer_2.2013.pdf 2013 edition - PDF 174 pages
What is the NCCN Guidelines Manual?
"The National Comprehensive Cancer Network® (NCCN®) is an alliance of 23 of the world's leading cancer centers, working together to develop treatment guidelines for most cancers, and dedicated to research that improves the quality, effectiveness, and efficiency of cancer care. NCCN offers a number of programs to give clinicians access to tools and knowledge that can help guide decision-making in the management of cancer."
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ladies, thank you sooooo much for your suggestions, kind words, inspirations!! I was pretty strong for up to now since my diagnosis on 11/04/13. But last few days, I feel so down sometimes. Thank you for helping me back on track.
Inspired: really appreciate your extensive insights and that's great information for me to learn.
When we learned about cancer, my husband was so worried and he wanted to remove the cancer right away. My BS did lumpectomy on 11/10/13, a week after diagnosis. I started chemo on Dec. up to now, it feels like I know what I am doing. I am always agonized over making choices. Hopefully it will become clearer to me after research and discussing with my doctors.
Thanks again for your great input!! I am really grateful.
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Maryan8
I found my lump. It was not there thanksgiving week - but I found it Dec. 8th. My decision was for BMX. Both mamo & sonogram showed my BC on left breast only. Talked to BS & MO, decided since not happy about how fast & don't want to visit again, so decided to do both. So relieved that I did. As during surgery BS found small lump on right side, sent for biopsy & did nodes that side too for double check purpose. Long story short it had JUST started on right side too. So saved myself second visit to OR. I was just lucky. Everyone has their reasons & their stories for their decisions. You just have to feel out what is best for you. There is no one answer. Have faith that you will make the right decision for you.
Prayers being sent.
Stupidboob
I'm glad Bill is doing great. I was saying my prayers for him & for you to not stress too much. Each day is a blessing. I'll keep my prayers coming for fast recovery.
To everyone. I feel blessed as the weather here has been great. Of course, South Florida does not get too cold or cold for that long either. I have been getting my Vit D. Been to our zoo & parks with my grandson in the last 2 weeks. Was in high 70's here today with lots of sun & little breeze. I try to send you all some good weather & sunshine!!
Best to all
Marsha
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InspiredbyDolce - thank you for being so knowledgeable about BC - I have not had the time to do a lot of research nor do I understand a lot of what I have research but you seem to be able to put it in terms I can understand. Thank you!
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