Calling all TNs
Comments
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Titan, I went to a seminar that was sponsored by our local hospital. The speaker's topic was very interesting regarding chinese herbs for use during chemo and radiation AND cancer prevention. He spent most of his time discussing the health benefits of mushrooms. He recommended several diffrent types, all available online in encapsulated form. I have ordered from mushroomscience.com but laurajane gave me another link. fungiperfecti.com. Interesting reading written by Paul Stamets. I am taking the supplements as a precaution against recurrence. I did not have chemo only radiation. Drs seem to think I made the wrong choice and have me worried.0
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Hi Annie - I also had a lumpectomy on the advice of surgeon. I didn't really know that mastectomy was an option. Everything from diagnosis to lumpectomy happened in 9 days - before I knew that I was TN. Now I'm weighing the option of prophylactic mastectomy - My BRCA was negative. Had it been positive, I would definitely have had the mastectomy. Now I'm not sure. If I don't, then I'll have 7 weeks of radiation. I'm having the same AC/T combo as you.0
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Hi Annie, I requested a bilateral mastectomy, my surgeon refused. He said a lumpectomy, chemo and then radiation would be just as good. His reasoning was because of the high rate of infections for women who have bilaterals. I went ahead with the lumpectomy within a week of discovery. I probably could have found another surgeon to do the bilateral but I just wanted the damn thing out of me. I also was very cancer ignorant but spent hours online researching TNBC. My reason for not doing chemo was I had seen what it had done to my sister in law with HER2 positve and didn't feel there was enough research done on TNBC to warrant chemo. I am not quite a year out and will have yearly breast MRIs for the next 5 years. Dr did say my recurrence would not come back in my breast but in other organs. Not too comforting a thought, so why the breast MRIs...sometimes I feel it is all about the $$$. Wishing you all the best on your journey. This blog can be so very helpful....you won't feel so alone.
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Hi Annie - I had a lumpectomy, followed by the same chemo regimen you will be having. At the time, I was freaked out by my BC diagnosis and didn't really consider all my surgical options. My surgeon recommended lumpectomy, and I was very happy not to lose my breast. It's a very personal and invidual decision you are making. Some questions to consider: How would you feel about losing your breast? How do you feel about having radiation? (a must-have with lumpectomy). And perhaps most importantly, what is your comfort level....i.e, if you have a lumpectomy, can you live with anxiety about BC returning in that breast? Or will you feel better knowing that the entire breast has been removed? The survival rate is the same with mastectomy vs. lumpectomy & rads, but the recurrence rate is higher for lumpectomy. For me, lumpectomy was a good choice, but we are all different. I wish you luck with your decision making.0
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I also had a lumpectomy...diagnosed on a Wednesday, surgery on Friday. I did know I was tn but I didn't know anything about TN..I was just glad to get that thing out of there quickly...maybe that is why my BS moved so quickly...due to the fact that I was tn..I don't know.
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Hi Annie,
I had a lumpectomy too, Time between diagnosis and actual surgery, not quite two weeks, they didn't know I was TN and I wasn't given the option of masectomy. I did Chemo, TAC x 6 and radiation. Hair has grown back enough now to look like I meant it be this short.
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Hello Annie, I had ER + IDC when I was 43. I had a lumpectomy, TAC and radiation. It returned as TN, seven years later, on the same breast. This time I opted to have both breast removed, and no reconstruction. Sometimes, I wish I had had both removed to begin with, but I wasn't as informed and perhaps not as mentally ready at 43. At 50, I had surprisingly little emotional problem, having my breasts removed. I know I do not miss being wound up, everytime I had a mammo. Seems there was always something we were watching. I know you will make the right decision for yourself. Once you do, don't second guess yourself. Sometimes it all seems to be a big cosmic crapshoot. And if it made a lot of difference - you wouldn't have been given an option. Take good care...
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Titan: I just loved the good night roll call! Celebrate! Celebrate! 3yrs is GOOD news.
TifJ: Go to NYC and have a BALL. So much to do and see.
LJ: your story continues to touch my heart.
Hello everyone we are all making it one day at a TIME!
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Annie: I had two tumours close together and my BS recommended lumpectomy and rads. I did a whole lot of research and soul-searching and have not regretted going with a Lx. I didn't know it was TN until after the surgical pathology came back but even so, expert surgeons quoted here on this site and elsewhere all say that they do not regard TN as a variable in surgical decisions (while tumour/breast size, margins, ability to tolerate rads etc. may be). There is also the evidence, sadly, that TNs are more likely than ER/PR+ to have distant recurrence than local... so surgery doesn't reduce that risk anyway (chemo does). That said, I have pressed for (and gotten) annual MRIs in addition to mammograms for local surveillance, as TN can be sneaky and grow quickly.
As you can see, there are many of us who opted for Lx, but in the end, for some women, it may be a very personal (rather than a medical) decision. Good luck with it.
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Titan, I forgot to congratulate you on 3 years!!! Fantastic!!!!
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Hi, Annie. When I was diagnosed in 2002 with TNBC, my doctor also recommended lumpectomy and that's what I went with in additional to adjuvant chemo and radiation. Nine years later in 2011 I was diagnosed with a 2nd TNBC in the same breast as the first time, only this time the tumor was larger (4 cm). I underwent more chemo and had a bi-lateral mastectomy. I couldn't help but wonder if I'd had a mastectomy the first time if I would have been spared this past year of difficult treatment. But of course you know what they say about hindsight being 20/20. However I'm very happy I had a BMX this time as I don't want any problems with the other side (had several biopsies on that side over the years). It's so hard to decide these things. You have to go with the science but also with what will be the best choice for you emotionally. Good luck to you.
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epgnyc - your situation is precisely the reason why I'm considering the prophylactic mastectomy, even though I'm not BRCA+. I have a co-worker whose sister died after the recurrance (she was TN). That's my biggest fear -- it coming back bigger, badder and all over the place!
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I had my chemo, lumpectomy, then rads. When I was finished with rads my RO told me a new study had just been released and said that a lx is just as efficient as a mx. So he told me to be very happy with my decision. I am!
Went to MO today and she said I was doing very well. She is sending me to pt for my muscle weekness in my legs. Schedule my mammo for March. Also is going to do some research to see if she thinks metforim would be good for me.
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Thanks KSmatthews. My MO said the same thing (I think my RO did, too) - which is why is keep wavering back and forth. ugh. The docs throw out statistics and other stuff and I keep thinking, "yeah...but YOU'RE not the one who HAS BC!" I'm also a very anxious person -- I've been treated for GAD (generalized anxiety disorder) for 5 years....all started when I got a call that I needed a 2nd mammo...which, turned out to be nothing, but I've been freaked for 5 years that I would get BC (I KNEW I would), and blammo -- I did.
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Annie, I was a candidate for a lumpectomy until the results from the BRCA1 test came back positive. It narrowed my options, at least in my mind, to one - a BMX which I will have next week. Both MO and SO recommended BMX. I'm not thrilled about it but if it will save my life, I'll sacrifice the girls. I am 52.
By the way, my mother was diagnosed 2 years ago with no family history of BC. They assumed hers was as a result of hormone therapy she'd had years ago. At the time, she was 76. She had a Lx with chemo and rads. So far, she's doing well.
I guess I'm saying that there are choices out there and the final decision is yours. I think most of us have been where you are. Good luck to you.
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CharB22, I also had a lumpectomy, then AC+ T, and rads. As others have said, the statistics are just as good (or better) for a lumpectomy + rads, as for a masectomy. Additionally, the recovery time is much quicker with a lumpectomy and you can get back to exercising more quickly, which may have some protective value. I would guess that one also goes into chemo feeling stronger after a lumpectomy than a masectomy because you haven't has such a major assault on your body.
You are doing the right thing to give it thought, and check out all angles. I have read that the rate of local (in the breast) reoccurance is the same for TN's as other kinds of breast cancers. Its relatively low.
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Well, I still have an infection where my port was taken out, but it is not a staph infection, it is some weird pseudonomas bacterial infection!? I looked it up and it comes from soil or pond water! Yuck! What did I get into? The power was out for 4 days and I wonder if that had something to do with it. So I am back on heavy duty antibiotics for the infection and flagyl to prevent getting the c-diff infection again. Will I ever get to do rads? My mo went crazy when he saw what I have been through since surgery and started making calls to all my other doctors and telling them they have got to get this taken care of so I can go on to rads, gotta love my mo! The receptionist at the infectious diseaSE doc office said I couldn't get in today and my mo threw a fit! He said he was getting me in to see a doctor today, whether it was him or someone else, they got me in! I just love my mo!
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Annie, thanks for asking this question. I'm facing it also. I'm 59 and my BRCA test was negative. I'm doing neoadjuvant therapy but my tumor was removed in the excisional biopsy.
There are so many great responses! I'll be reading them all many times.
Phyllis
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Good thing you B**t**ch**ed Bak..sometimes you just have to do that...go over a few people's heads.
the lx vs masectomy...you've got to do what is right for YOU..good thing you are checking things out...I LOVED the fact that I had surgery on Friday..virtually no recovery time..back to work on Monday..no big deal..I felt so much better after that part was over...remove the evil and get on with it..in my case and most others..chemo/rads...
HOWEVER...and a big HOWEVER..if I have any inkling of anything going on now..the girls are coming off...no question.
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I think this is such a difficult decision. I didn't have time to think and went with a lumpectomy and am fine with this. My tumor was small and yes, we all risk a reoccurrence but the odds are in our favor that we will be fine.
the mushroom info is very interesting. Thanks for sharing.
My sister took me to Hawaii to celebrate my geting past chemo and radiation. Just came back. It was wonderful and a great escape.
Beginning to get enough hair to go without my wig except at work for now.
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Bak - damn and blast !!!! I am so sorry to hear of your latest setback.
Painting- what a wonderful sister. I'm glad you could escape.0 -
I read a study recently about how under-informed most breast cancer patients are early on - about their options, about their prognosis, everything. Apparently the surgeons and oncs are not telling us enough - probably trying to protect us from rampaging anxiety. But the problem is we don't have the information we need to make informed choices.
And the big one is lumpectomy vs mastectomy. In my case the surgeon said, small lump, no sign of nodes, do a lumpectomy. Me, knowing nothing else, said sure. This was after the mammo showed my lump, as well as some calcifications, which they told me were nothing to worry about. Well lo and behold, after I turn out to be TN, did lumpectomy, SNB, axillary dissection, 5 months chemo, and started my first week of rads, my 6 month follow up mammo showed those calcs had changed and now were BIRADS 4. And after another horrid biopsy, were found to be DCIS.
At that point I got the BMX I should have gotten first time around, if I had been given all the facts and had the ramifications properly discussed with me. I have also heard that BMX does have slightly less chance of recurrence than lumpectomy/rads.
Bottom line - it's so overwhelming when you're first diagnosed, but do try and get all the info you need to make an informed decision about your treatment. Don't rush into anything out ofignorance or fear.
oh, here's the article;
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Also, ushrooms - AHCC and Peak Immune, they both have mushroom mycelium which is a cancer fighter.
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I had a lumpectomy with my first cancer in 2002, and it was the right decision for me then. I did not have the brca test until this time around and found out I am positive, so had bmx this time. Lumpectomy was much easier, emotionally and physically for me. I couldn't do immediate reconstruction after bmx, not for at least a year. Now if I had a more informed doctor that had done the brca test on me the first time around or if I had been more proactive I would have probably done the bmx the first time and possibly saved me from this later stage cancer that was missed even though I was being watched closely. But if I was not brca positive and had regular risks, I think I would do lumpectomy, bmx has really messed with my self confidence and my range of motion and just feels tight and uncomfortable, of course I am only 2 months out from surgery. I guess we can only do what we feel is right at that time.
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I had a lumpectomy with my first cancer in 2002, and it was the right decision for me then. I did not have the brca test until this time around and found out I am positive, so had bmx this time. Lumpectomy was much easier, emotionally and physically for me. I couldn't do immediate reconstruction after bmx, not for at least a year. Now if I had a more informed doctor that had done the brca test on me the first time around or if I had been more proactive I would have probably done the bmx the first time and possibly saved me from this later stage cancer that was missed even though I was being watched closely. But if I was not brca positive and had regular risks, I think I would do lumpectomy, bmx has really messed with my self confidence and my range of motion and just feels tight and uncomfortable, of course I am only 2 months out from surgery. I guess we can only do what we feel is right at that time.
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Thanks for the input, everyone. I have time to mull over the lumpectomy v. Mastectomy decision since I'll be in chemo for the next four months. Let's face it, all of this is confusing as hell - especially when the diagnosis is new. Another advantage of neoadjuvant chemo, I suppose.
Okay. Off for my first A/C treatment tomorrow. Wish me luck!0 -
Good luck Annie!
I am freaking out right now! I should stay off of Dr. Google, but reading up on this infection I have is scary! Some sites say it has a 50% mortality rate! Anybody else ever heard of pseudomonas aeruginosa? I guess it is a big problem in hospitals and with cathaters, my infection is right where my port was! Now I am thinking I got it when I was in the hospital, as that darn incision from where they took the port out is not healing. I ahve been to my surgeon (well, his co worker as mine has been out) twice a week to have fluid drained and they didn't notice this should be healing faster? He had mentioned he might have to scrape out the bad scabbing and reclose at some point well why not sooner than later? I had no idea this was so serious until I looked on google. I am going to post this somewhere else also to see if anybody has heard of this.
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Hello bak94
I am sorry to read you are having so much trouble.
To help you I have posted a lot of information about pseudonomas aeruginosa on my thread. This is not taken from the internet.
Wishing you well.
Best wishes
Sylvia
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bak94 so sorry you are having so much trouble with your port incision. I have a question though, how do you know it is infected? Mine is still red, and sometimes when I move my arm a certain way it hurts. I went to my MO yesterday and she looked at it and didn't say anything. So Idk?
Lumpectomy vs Masectomy I did leave it up to my BS to do what he felt was best. I told him when I was going into surgery to do what he had to do. So when I woke up I said do I still have my boob! I had complete response to the chemo so he just needed a sample to send for path.
I agree though each individual has to do what is right for them!
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Damn Bak!! I have never heard of that particular bacteria. My port infection took about 17 days to really be gone. My port itself was never infected- it was in the catheter up by my neck. What antibiotics are you currently receiving? I am so sorry this is happening- why does there have to be complications- haven't you been through enough!
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