Calling all TNs
Comments
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Wow...I hate it when someone posts on here FALSE comments...sheesh...this is why you shouldn't believe every thing you read...here or anywhere....
I had a lx and chemo/rads...I'm very happy that I had a lx .....
If your oncologists says it is ok...its probalby ok...
Who is this Alny chick anyway?
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Morning ya'll..been awhile but I do read every day..hopped in to answer the question about lx..I had lx..after some research that showed just as effective as mx..on the chemo before/after surgery question..most times with larger tumors they want them to shrink down..mine was 1.4 cm..there is no difference in size in the breasts after lx for me..got clear margins..rads (internal) ..think chemo is a given with triple neg..finished up end of October..got hair!! trying to curl..about 2 1/2 to three inches long..feeling better..still a wee bit tired..chemo is not a walk in the park..but it is doable..the fear was worse than the actual..believe it or not..I'm sure the rest of these old timers will tell you the same..so all you newbies hang in there..there is another side to this journey..and you will get there..love to all..
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DorMac,
Thanks for the letter it really created some great visuals in my mind. LMAO.
Sheryl
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adagio,
I had a lumpectomy due to small size of tumor and no history of cancer in my family. My nodes are neg, and my margins were clear. Almost done with chemo and will have 30 rads treatments. My MO and RO both feel that this plan is as good as a mastectomy. Only time will tell.
Sheryl
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Oh Almy, don't leave our boards. It is just a misunderstanding, and you posted what you have conviction about. it opened up a great discussion, and the more we talk about things, the more we can gain insight and information.
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Keke, My chemo went well for me. I did not get sick with either. Some people tolerate the AC and not the taxol and vise versa. I was able to tolerate the AC and the taxol kicked my butt. I had leg pains and neuropathy with the taxol. Still have the neuropathy but its doable. Im not going to suger coat it, chemo is not fun. But I tried to make it a positive experience as much as I could. I had complete response with the chemo, meaning they could not find any evidence of the cancer. I couldn't have asked for a better outcome. I also worked the whole time through. Today, I'm still tired. I try to listen to my body and rest when I can. But I am walking 2 miles a day and am seeing a cancer nutrionist tomorrow. You will have to ask your surgeon or oncologist regarding if they are going to do chemo on you. My sister just had a lumpectomy and nothing else. And that was 12 years ago. She had a smaller tumor than I plus our mom had not had breast cancer yet. So, like I said because of both my sister and mom had BC, that is why I chose the BMX. My doctor said it would not change the outcome if I had a lumpectomy or masectomy but it made me feel better. Hope this helps answers some of your questions....Hugs to you!
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logoff aka almy: I'm sorry you feel a need to sign off, but with respect, I will continue to challenge your statement that "in common medical practice lumpectomies are generally not recommended for TNBC even in early stages." And in case you are checking in, thank-you for sharing those links. Hard facts are always appreciated! (I am, admittedly, a research junkie.)
I do wonder, in one of those studies you cited, whether those were medically required re-excisions because if so, that suggests pre-existing increased risk i.e. not good candidates for Lx to start with for other reasons perhaps... Also, the study fails to consider whole treatment: Lx is virtually always performed with radiation, which seems to have its own protective qualities for TN (see below). So while some residual disease may have been found in that sample, it by no means proves any altered/worsened outcome.
When you consider studies like these: http://link.springer.com/article/10.1245/s10434-011-1920-z and http://jco.ascopubs.org/content/early/2011/06/09/JCO.2010.33.4714 it is obvious that there is plenty of recent evidence to support an alternate view to yours.
Finally, I would like to clarify, in case there was some misunderstanding, what was most alarming about your post was your assertion that BSs do not recommend Lx for TN (anymore). That is simply not the case, which hundreds of women on these boards clearly demonstrate... not to mention surgical practice guidelines. And yes, I think it does breed anxiety when women in the boards are second-guessing their BS' recommendations, based on an opinion, not fact.
The point gilly and I and others were making is that BSs make recommendations based on the factors and risks presented by individual patients.... many/most do not consider TN in and of itself to be salient, and I have indicated several links to show that. You're entitled to think they're wrong for that (based on a few pieces of research), but not to say that those (thousands of?) doctors don't exist.
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I wasn't given a choice at the time on my treatment. It was recommended that I have a mastectomy. I presume (and I may be wrong) that it was because my tumour was not a lump but rather a long line of little white dots on the x-ray which were invasive. When they showed me on the x-ray what they were like they had to give me a magnifying glass because they were so small and I presumed from that (quite wrongly) that it was in the early stages however, it turned out to be Grade 3, Stage 3a, TN
A lumpectomy did not come up as a recommendation for me to have in the discussion. I think once you are given all the facts it becomes your choice on what treatment you decide on but I am sure we would all take the recommendation of our oncologists and surgeons into account.
At the time it seemed that in a lot of other country's lumpectomy was the preference and that concerned me for a while, and here in NZ not so but that seems to have evened out now.
I feel like I got the correct treatment for me and the only thing I would change would be, I wish I had had the other breast off at the time (a) because I'm not keen on the prosthesis and (b) to try and prevent cancer in the other breast, although there is no clear indication written anywhere that cancer spreads to the other breast.
I believe whatever you choose in combination with your surgeons recommendation is the right course of action for you.
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Keke,
For chemo, I was given 4 rounds of adriamyacin cytoxin, delivered every two weeks, followed by 12 rounds of taxol, delivered every week. I was a later stage (2) and had one lymph node involved. For my individual situation, I was told chemo was required and had to start "right away." I had a hard time with AC, an easier time with taxol.
I am still glad I did chemo as even with these "big guns" my tumor did not entirely go away...it did shrink by 78 percent, and the proliferation (something called ki67) dropped from 70 percent to 17. That's supposed to be a good sign. I chose aggressive treatment (eg radiation even though I had bilateral mastectomy), but that is just me.0 -
DorMac great joke. Thank you for making me laugh.
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Adagio,
I initially posted the below to the wrong thread. The study I mention is only one study. As has been mentioned, oncologists and breast surgeons give their patients a wide variety of recommendations as to treatment...both overall and specific to the individual women/their situations. I lean toward more aggressive treatment because I have (had?) a very nasty tumor. And my intuition told me to.
I had a BMX, and I am getting radiation. (I chose prophylactic mastectomy on the non-cancer side.) According to the quote below, for early stage, triple negative women under age 50, having the unaffected breast removed improves survival.
"Only limited data are available on the survival impact of mastectomy contralateral to a unilateral breast cancer. Analysis of women included in the Surveillance, Epidemiology, and End Results (SEER) database treated with mastectomy for a unilateral breast cancer during 1998-2002 showed that contralateral mastectomy performed at the time of treatment of a unilateral cancer was associated with a reduction in breast cancer-specific mortality only in the population of young women (18-49 years of age) with stage I/II, ER-negative breast cancer (hazard ratio 0.64; 95% CI, 0.44-0.94; P = .025)." Source: National Comprehensive Cancer Network, NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines), Breast Cancer, Version 2.2012, NCCN.org, page MS-12.
I know that this doesn't answer about mastectomy vs. lumpectomy + radiation. My doctors told me that mastectomy has a lower risk of LOCAL recurrence, compared with lumpectomy, although it does not improve survival. For me, that was enough.0 -
Just want to thank everyone for their opinions and research as I have to make a decision on which surgery, although my surgeon has suggested LX for me. Either choice will include radiation. It is always going to be a choice filled with emotion, we all only hope that our choice will increase our survival rates. I just wish one choice would feel more correct for me,but at this point I am 50/50.
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Just want to chime in. My BS gave me the option if lx or mx. She said it was totally up to me and that she could def do a lx and was confident she would get clear margins. But I chose otherwise. Just my choice for maybe a little more piece of mind :-)
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Just curious, is the piece of mind that there wouldn't be a local recurrence? From what my surgeon said, there is only a 2% difference between mx and lx,so I'm sort of confused as to why some choose mx, is it the 2% difference? At this point I'm more nervous about recovery from the more major surgery of mx, but understand that if good margins arent achieved with lx, more surgery would be needed-quite possibly mx. Do either surgery have better outcomes for mets? It's all so overwhelming at times, it would be so much easier if there was more clear cut research and we didn't have to make life and death decisions.
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My BS first suggested a lx on my first visit with her. We were going from an ultrasound and a more thorough mammogram on my left breast, which showed the tumor as about 2.9cm. Then she ordered an mri and decided from it that the tumor was larger than we first thought so she suggested either a mastectomy or chemo to try to shrink it down to a size that the lx might work. I opted for a mastectomy because my breasts were already pretty small and I really didn't feel safe waiting for the months that it would take to do chemo, just to later find out it didn't work as expected and then I would be in real trouble. She also sent off the oncotype test at that time. So I had an expander in place and was up to my very last expansion when the onco came back that I'm actually a TN. So everything has been put on hold and I got my brand new port today. I will start on chemo next Tuesday, thanks to a post on here about leaving the port insertion plenty of time to heal before chemo! (Thank you!!) Once they actually had the tumor it turned out that the invasive part of it was 2.9cm but there was actually another 1.4cm of less invasive cancerous material around it, so the mx turned out to be a very good decision. If I had known when I had the left mx that I was TN I most likely would have had them do the other one, too, just to be sure. I almost did anyway, but decided not to.
Good luck to everyone with all procedures and operations coming up and thank you so much to everyone on here for offering support and encouragement to women who REALLY need it at this time.
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slv58 I can't answer the question on lx v mx because there are no many differing opinions that I just don't know enough about the lx. But to answer your fears on surgery for the mx I had no trouble with my surgery. Just a little bit of soreness if you could call it that, really no pain at all unless I pulled the tube where the lymph nodes were removed because I forgot it was there. I was supposed to be in hospital for four days but convinced my surgeon there was no need for me to be there as I felt so well and in no discomfort so came home on the morning after the day of surgery. (I'm a real home body and hate being away from it). The bag for the drainage of lymph nodes was the most troublesome because as I say I forgot the darn things were in there and would get up and walk away without the bag, ouch,but they did give me a smaller bag I could put in my dressing gown pocket once the first tube was gone. I had two of them which I think is pretty normal. I can honestly say I had no discomfort at all. The District Nurses came every day to check on the wound and the drainage and that was all there was to it.
Hope this helps but somebody is bound to come on and help you more.
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teresa008 I had chemo the day after my port was inserted. They gave me an Emla patch to put on an hour beforehand and I never felt a thing. Hope everything goes well for you. Big hugs.
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seriously ladies...if I came on here and told you that I had the cure and that all you had to do was to send me a thousand dollars and I would send you the cure would you believe me? hell no..l Though I think Loafer was trying to help but..coming on here and saying that an LX is s bad thing to do and a MX was the only thing for tn's is just plain wrong...it is NOT true...reasearch, reasearch ladies...talk to your own oncs about this...like dolce said there are just too many variables to determine which is best for YOU... I had a LX because I could...I also had 37 rads plus the strongest chemo they could give me....having an mx isn't a guaranteed cure for anyone...even the positive ladies.
That said...love all all you...let's keep on with what we are doing here...supporting each other,...laughing at jokes...we certainly need them....and make the right choices for YOU....
Hey...I'm 4 yearss OUT next Weds....party with me ladies...I've been feeling down lately...March just brings back bad memories.....
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There are so many I could have sent you Titan to make you laugh but this one tickles me every time.
I will make it my aim for a "Cheer up Titan" week. I know what you mean about March. Every time I sit at this computer and look out the window it's like going back a year and gives me a funny unpleasant feeling. Roll on next Wednesday and we'll party, party.
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That pics is funny to me Cocker_Spaniel bc that is what I came home to after chemo today. 21 days until my last chemo!
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21 days until my last chemo!!!!
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Thanks Cocker!
Amen Titan and yes I will party with you!!0 -
Love that picture, Cocker.
Congrats to you Titan. Celebrate, celebrate and celebrate some more!!
My 2 cents on the current discussion:
At the time of my DX, I also was given the choice of LX, UniMX or BMX. With the understanding that any surgery that I chose along with appropriate chemo/rads, would all have the same stats for survival. I am grateful that I had a choice. And I am comfortable with it. And I believe that is the key....to feel as good as possible about your options and your choices.
In memory of our lost sisters: The best thing that happened to me today: A skype call from my Navyson. Its been 3 weeks since we talked and he looked wonderful to this mom's eyes!
A request to please pray for the world's leaders to make good choices and that our military personel stay safe and can all return to their families. Thanks
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Titan next Wednesday I will find the funniest joke I can for you and then we will all party. Congratulations on four years, I hope I make it too.
jenjen1 great news about your last chemo. You go girl. Have a party yourself and we'll all join in.
NavyMom wherever and however that boy will always look wonderful in his mums eyes. I will pray for your millitary that they are safe and will return home soon.
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Annie - Thanks for the laughs!
Jen - Woo Hoo!
Titian - So glad you will be celebrating next week! Keep looking forward!!!
Chemo tomorrow! I'm a little anxious because my port incision hasn't healed.0 -
OBXK..Good luck tomorrow. What type of chemo are you having?
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Thanks! Carbo/gemzar.
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Karen - bugger. Will they use it or will they try and find a vein. Do you put some numbing cream on first? How are you with this combination chemo. What side effects do you get. Is it the same as your first lot? Thinking of you for tomorrow and sending big hugs.
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Thanks for the joke Cocker...good stuff!
Karen...have heard some good things about Carbo/Gemzar~
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