Calling all TNs
Comments
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newalex~ It is a lot of radiation. You are correct. However, I want to find any possible mets early... My onc agrees that for the 1st 2-3 yrs, it is reasonable to do frequent monitoring. After that, we'll decrease it significantly.
great news kittycat!
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MicheleS - many of us with early stage bc will get only an annual mammogram and clinical breast exams every three month but no scans. My onc says they don't do scans because they pick up a lot of stuff that turns out to be nothing and causes a lot of anxiety in the process.
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Sugar~ I know. Different MD's treat differently. I wanted a super-aggressive MD so that's what I hired.
There are soooo many ways to treat (and then monitor) TNBC. I don't think that there's a textbook *best* way. But, for *me*, I wanted big chemo, prophy surgery (other breast AND ovaries), and lots of scans... so that's what I'm getting. FWIW~ I have a good TNBC friend who has had only a single PET and bone scan (but a bilat Mx) and is happy with that. She's a year further out than I am and is doing well.0 -
McheleS - it could be a protocol here where I live in Canada as we don't hire our specialsts. We get referred, i.e., my family doctor referred me to the surgeon, who then referred me to the medical and radiation oncologists. Our healthcare is fully paid by our goverment. Our care is very good and I have no complaints but I do think they have to follow specific guidelines. For example: if I had a family history then perhaps I'd get an annual MRI or something like that. Sounds like you're happy with your doctors and that's wonderful! I'm happy, too....would have been much happier not to have had bc in the first place, though!
Sherri
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Sherri~ no kidding! I wish there was a way to turn back the clock or something... <sigh> Sounds like you are getting great care too. xxoo
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Michele...I would freak if my onc. said I needed a scan..absolutely freak...how do you do it? Yes..I want to be as aggressive as possible....as our cancer is..but I also don't want to have the anxiety of freaking out about it all the time...My onc. said I could have a scan any time I wanted one...so that is in the back of my mind..and that is ONLY if I don't feel something isn't right...I am very diligent on how my body feels...I'm not supposed to have a mammo for another year..but I'm not waiting that long..6 months for me though I will have to request it..still seeing the onc every 3 months, bs every 6 months and I'm happy with that...you just keep telling us how the scans are going for you...maybe I will be brave enough to have one....I don't know..I'm just afraid to have one..its just too soon for me......
On another note..went out tonight with some girlfriends..had a great time...the best part was..NO talk about me or my freaking cancer...they just told me they liked my new "blonde" look and that was it...besides that..it was just good old gossiping and one very nice super frozen Margerita YUM YUM...then I come home and my 19 year old son told me I shouldn't be driving after having one margerita...oh well..sigh....
I know I didn't spell margarita right...but I sure could drink one!
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I have not had a followup PET scan but in January I had MRI, Mammo, and CT of the chest, abdomen, and pelvis, and an internal ultrasound. I will have another mammo and the CTs in August. Although the scans can cause stress, I feel betetr that if something does start growing, we'll catch it qucik.
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I hope no one takes this the wrong way, but I'm wondering, so I'm gonna ask.
When I was first diagnosed, I had er/pr + her2- idc. After chemo, I recurred and now have TN. Docs think the chemo I took at first killed all the er/pr pos. stuff, so thats good. Anyhoo, I had a bilateral mastectomy when I was first diagnosed. My cancer was small, but I didn't want to mess with this stuff for the rest of my life, however long that was going to be..... I figured I'd have em both taken off and reconstruct if I wanted. That was BEFORE the TN dx. Had I been dx with TN at first, I would have done the same thing....but never batted an eye.
How did you decide to do a lumpectomy, knowing TN is so aggressive?
Please don't yell at me. I totally understand it's a personal choice. I'm just not sure what the motivation is behind lumpectomy versus mastectomy given the meanness of our type of cancer.
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I had a lumpectomy and I have never had any regrets (yet)....It still is PROVEN that a lumpectomy plus rads is equal to a masectomy. I did not want to have all that surgery plus recon if I didn't have too. My surgeon got HUGE margins...my breast looks the same as it did before..my last mamo was perfectly clean...at least for NOW..I'm good..
I do know that if there is a reoccurence I will have them removed...that is still an option...and there is also no guarantee that if you have a masecetomy that the cancer will not return to the chest wall..it still can happen.
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When the BS had his consultation with me, it was based on the needle bx. I had not path report on it yet. He gave me the choice, but I was a single mom and thought I could cope better with the lumpectomy. Although my PA at the cancer center told me of being TN, she never told me about how aggressive it was. All I knew is that I would be having both chemo and rads because of it.
I'll admit it, I was an idiot. I didn't have access to all of the information here (I couldn't afford the internet). I only found out about TN and how bad it could be, two years ago. If it makes a reappearance, I know I am under great care, and will be able to talk about the options with my Onc with total clarity.
Vanity also had a part in my choice. I knew I wanted to find that special someone, and was afraid a mx might limit that. Stupid, stupid me.
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At the time of surgery, it didn't make sense for me to get a mastectomy because my surgery was classed as "non cancer" surgery. It was to remove atypical hyperplasia tissue found on a biopsy to be sure there wasn't any DCIS lurking nearby. Finding the invasive tumor was a surprise. I suppose I could go back and have a mastectomy after the fact but my tumor was small and I had chemo and rads so for now I'm okay with it.
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I also feel that IF any cancer cells got "out"...it wouldn't matter whether or not you had a lumpectomy or masectomy....I certainly don't want a recurrence but IF it would happen you want it to be in your breast and not somewhere else...then you can just have them hacked off
.Hopefully..whatever we had our treatments worked.the aggressive chemo (and most of us had that)...to kill any of those darn cancer cells that may have been floating around...and the radiation to the tumor beds to further make sure that if there are any cancer cells left in the breast they are zapped!
Good discussion here!
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Hello all. 32 yo diagnosed 10/09 with triple negative bc. Presented with swelling and pain under the arm to PCP. He thought it may have been an infection (gave course of abx) but he also ordered breast US at our local cancer center and there I had US and mammogram which showed mass in left breast as well as suspicious lymph nodes. Within the week I had breast ultrasound, mammogram, and biopsy. Path showed IDC, triple neg, grade III. Met with Surg Onc first and thought that since chemo would be needed due to my age and aggressive nature of TN that I needed to see the Med Onc first. I met with Med Onc and decided on clinical trial (allowed use of chemo only used in metastatic and late-stage bc) of neoadjuvant chemo. Did 4 cycles of gemzar, avastin, and taxotere followed by 4 cycles of AC (first 2 with Avastin). Had lump + AND on 5/12 and will be starting rads in June. I still have 10 doses of Avastin to complete (due to clinical trial). I actually have 2 questions--Has anyone taken Avastin by itself and if so how were the SE's if any? My Med Onc says it is well tolerated and should be nothing like my previous combination chemo. Second question-For anyone that had an AND, how long did it take to recover? I am still quite painful and sore and have to continuously stretch throughout the day to keep my arm from locking up. I am off of work until August, but am concerned about the length of recovery. Thanks for any suggestions.
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I had an axillary node dissection and needed two rounds of physical therapy to feel that I had a good amount of range of motion in the axilla/shoulder area. I still stretch at least once a day, sometimes more than that, to feel that the axilla is stretched. I don't know that it will ever feel "normal." My massage therapist says a I do have full ROM, it just feels tight to me.
Kathy
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hi Pamelajo
Was the TN in the same or different breast from your first dx of ER+ one? Were you on Tomoxifen for the ER+?
You had Bl mast the first time and had TN on the mast. site?
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amldoneyet..... I had bi lateral mx almost a year ago, and I still stretch several times a day to make my arm feel better. My right arm. I had 19 nodes removed on that side and it becomes painful if I over exert it. Hang in there girl!
newalex.... I had bi lat mx in July of last year. My recurrence was in some fatty tissue left from the mx. They found a few cells (TN) in the scar tissue the PS removed during recon. I also had a lump next to where my initial tumor was last year. Scared to death that the cancer had returned in my skin, but in fact, it hadn't. It was in a very very small amount of fat between skin and muscle.
Cancer was found in both breasts initially, which helped me decide to get the mx. My left breast had a slow growing er+ grade 1 idc. My right breast had a grade 3 er+ tumor less than one centimeter large. I was stage II because I had two positive nodes with very few encapsulated cancer cells in them. I did taxotere and cytoxan, and then started tamoxifen. I had been on tamoxifen for about 3 months when the new TN cancer appeared on the right mastectomied breast. Onc said that the T/C mutated it, killing off the ER receptors, but did not kill the cancer. I didn't do radiation. I will this time though.
There are no guarantee's either with a lumpectomy or mastectomy. But, I'd like to clarify something someone said. Just because you have a mastectomy does not mean the cancer will come back in the chest wall. Breast surgeons cannot and often do not get all tissue out.....and if there is a recurrence, it can be in fatty tissue. I'm proof of that. My question wasn't a pointing fingers type of thing or an OMG why'd you do that moment. I just wondered. Having a lumpectomy would have been so much easier physically than what I've gone through, but I still feel like I've done the right thing for me both mentally and emotionally. My boobs were not that important to me. I do miss them now.....but I like my reconned ones too. I'm 39. I will never "feel" my new foobs, and the numbness from the surgery bothers me, but really that's all.
It's hard to explain to some folks that I have had a lumpectomy on a mastectomied/reconstructed boob LOL but I have. Got the ugly scar to prove it. Now I just have to make up my mind whether to have nipple recon or just let that go....... i'm leaning towards being nippleless. Can't handle the thought of more surgery right now.
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kmartin. Thanks for the information. My surg onc said to give it a month and if it didn't get any better he would give me a referral to see a PT.
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Pamelajo: I didn't have the full path from my biopsy, but I'm not sure it would have affected my surgical decision. I chose a lumpectomy because:
- all the evidence (and there are lots of long-term stats now) shows that with rads, lump is equivalent to mastectomy (... and contrary to what some people post on this site, the risk of recurrence is not zero for mast).
- Like Titan I didn't want to go through more surgery than I needed, nor did I want to lose a body part that's pretty important to me.
- My BS was very confident that lump was a sound surgical option for me even with 2 tumours (however, they ran deep and I have one very narrow margin - 1 mm - but a mast would not have done any better)
- I also thought (though my BS said it wasn't really relevant) that if cancer recurred locally I'd at least have some breast tissue to remove.
- I don't buy the argument (and neither did my docs) that mast is somehow more "aggressive;" one can make the argument (and many do - Dr. Susan Love is one) that a lump followed by rads and boost to the tumour area is very aggressive.
- what scares me most about cancer and TN in particular is the risk of mets. Unfortunately our surgical choices don't have much to do with that.
In the end we all do what we feel comfortable with. I don't have any regrets.
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pamelajo, I'm trying to get more exercises to do to continue stretching....thanks for the encouragement
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Pamelajo~ I didn't want rads so I had a mx. I went bilat for a number of reasons (including fear). If I had been comfortable with rads (and if there hadn't been more DCIS in my breast), I would have had a lumpectomy. I tend to be super-aggressive but even I feel like a mx=lx+rads. However, that's JMHO. As with chemo and scans, these decisions are really personal preference. We all have contributing factors and I don't think that there's a "single, best way" to approach TNBC. So.... I had a bilat mx + lots of chemo + lots of scans. *For me*, this is the treatment plan that makes me the most comfortable.
PS~ Thanks for telling us 'bout fatty tissue local recurrence... I *do* worry about chest wall recurrence... <sigh>
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Meece..what does your onc say about recurrence to you now that you are almost 7 years out? I would think that at 7 years out..your percentage of possible recurrence or mets has got to be pretty low!
Welcome to the tn club amIdoneyet and pamelajo!
My SIL had breast cancer one year before me....I watched her go through at least 5 surgeries and then the reconstruction and nipple. It took one year from start to finish. I saw all that and then was I was diagnosed and heard that I was a good candidate for lumpectomy I jumped right on it.
I was diagnosed on a Wed. and had the tumor removed 2 days later on a Friday..no way, now how would I have been able to have a masectomy that quickly. I just wanted that sucker out of there...I hated it.......My BS moved some things around so he was able to fit me in....I'm still grateful for that
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I'm a horseman. If I had done the mx w/recon I would have been away from the things I love a *very* long time.
My surgeon at MSK was very supportive of the lumpectomy route for the same reasons already given: lump + rads = mx.
Bottom line? Each of us chooses that which makes us most comfortable both physically AND emotionally.
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Heidi..again..we think alike..I'm not a horseperson ..but I live a very, very busy life..I couldn't stand the thought of being laid up for awhile..it pissed me off...I would have driven my family and friends crazy..they had a really hard time putting me out during my lump and I woke up fighting...I just wanted to go home..they said I had to eat and pee first so I did that and was out of there...I stayed up until 2:30 am that night..eating pizza and watching the college basketball tournaments..I went to the grocery store and cleaned my house the next day..went to work on Monday after having the lump on Friday...I told my co-workers that I couldn't believe how happy I was to be at work! like you said every one is different and handles these things in their own way...no way is wrong...it is what suits you...I just happen to be pretty much a crazy type person that can't sit still....
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Interesting question, Pam. When I saw my surgeon, it was after hearing my PCP say DCIS. The surgeon explained it was also IDC. She gave me options and stats, and I chose the lumpectomy route. Later, when I knew more about TN and was going thru chemo, I asked my onc if I should have had a mast instead. His response was, "No. If I had felt that way, I would have encouraged you to go back in." I feel comfortable with my decisions. My path indicated that all the aggressive cells may have been pulled during the biopsy. We went gunning with chemo & rads for any that may have escaped notice.
Meece--Don't beat yourself up. Vanity probably plays a role in more decisions than we admit. And you were dx in 2003? Years ago? You gave me a lift.
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Yeah Meece..there are times..that I think..maybe I should have cut them off..then I rationalize with myself and I remember what the doctors said....I go to a satelite center of the Cleveland Clinic..I know that people have been told to go to Cleveland for their treatments and not have their treatments at this center...I honestly have to believe that the lump was OK for me...I really can't believe that they wouldn't have sent me to Cleveland if they honestly did think I needed a masectomy. when I had a couple of calcs. last September I made the comment that I was just going to have them cut off and my bs said..isn't that a little radical? I really think that they know what is OK for me...Sometimes you just have to trust.
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When I went to my onc in January 2009, she told me that I had reached the point where the chances of this TN cancer recurring was less than .2 %. She noted that it didn't mean that a different type of cancer was less likely, just that TN IDC was highly unlikely.
I said something to my PS that I wished I had had a BMX instead of having to deal with the issues of trying to get restored, and he said no way. Since I could get by with the lumpectomy and subsequent treatments, that I made the better decision. Again, it is a decision that has so many facets that each person and their treatment team need to make the decision together.
Sometimes I think I got through it so well because I ddin't know just what I was facing. Ignorance may have been bliss indeed.
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lumpectomy vs mastectomy discussions very interesting and helpful - am glad this thread was started! I was diagnosed Jan 2010, triple negative on my right side - it was mammo'd and ultrasounded as a fluid cyst (even the fluid came back negative!) for months before they biopsied the cyst walls, which came back TN and growing very aggressively. BRAC negative. PET indicates no nodal involvement or no spread.
I'll be done with chemo mid-June (half way through chem my tumor had shrunk by over half - yay!) and then surgical decisions must be made. Met with PS and surgeon recently; they seem to be leaning towards a mastectomy but we're going to see after chemo MRI. It just doesn't seem clear to me. My (Mayo) surgeons conceded that with TN that there are no clear answers regarding lumpectomy vs mastectomy, if obviously we can get decent margins during surgery. I'm not necessarilly confused...more I guess, perplexed...
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Wow, there really are too many of us! I was reading everyone's posts and my feeling is this: You not only should get three opinions before doing any surgery but you should also listen to your gut. I went first to City of Hope and the head of OS told me I could wait (if I hadn't my surgery may have been less agressive), they refused to test my lymph nodes (said it wasn't necessary) and basically offered me chemo, MX then Rads and said I could only have one type of surgery Latis/Dorsal and his motto was "do as I say or you will die". After 3 visits and me in tears everytime, I decided to get another opinion first at UCLA, then a friend suggested UC Norris Cancer Center and it was like night and day. My OS was kind, gentle, thourough and also happened to be an expert with TN! I made my decision that day. Didn't need rads (he tested me and found I had no lymph node involvement), chemo shrunk my mass to a manageable size and I was able to do immediate/delayed reconstruction. My OS went extra deep into the chest wall to prevent recurrence there. He was also an oncoplastic surgeon so he did a beautiful job of matching the shape of my original breast plus lining it up with my remaining natural breast. I am now in the middle of reconstruction and I just can't live my life in constant fear of it returning. I did change my food habits: dairy products that aren't organic are full of bad stuff for us cancer survivors. Same with most bleached flours, beached anything--really why would anyone take out all of the nutrients in our food with bleach then try and put it back in is beyond me. So the benefit is, I have lost my 20 pound belly--No dairy except a little parmesan or butter occasionally. If it has more then 5 or 6 ingredients it's probably a chemical. I still eat bread except that its all whole grains. I eat rice but only brown or wild or something else not white. I eat pasta but healthy pasta not from some treated "enriched, bleach flour" crap. I drink a glass of red with my dinner occasionally. I make sugarless treats. I eat lots and lots of fruits and vegis. I have slowly started to excercise. I think trying to do these things help me feel in control and not in fear. But it is such a personal decision and no two people are alike and neither are their choices.
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MBJ, my initial treatment was with a cancer center locally. As soon as I finished rads, they dropped me. No follow-up, still to this day, no contact from them. So, several years ago my Ob/Gyn got me in touch with UCLA and I now go for all my follow-up there. My onc in involved with TN studies, and I feel very confident in her. When there is something in question, she jumps on it. It is a 130 mile trip, but well worth it.
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Thanks for sharing girls
Probably, if this had been my first rodeo with cancer, I would have just gone with a lumpectomy. However, having been sick at 17, again at 24 and now.... I'm just so over having cancer I cannot even begin to explain LOL It's like I can't ever be comfortable in my own skin.
But, God told me this was the last time, and I believe Him. Or maybe I've just gone insane. Not sure.
Anyway, regardless of which way we went, I think we are all far more aware of our bodies and with TN, you have to stay on top of everything. This type of cancer is sneaky. I've found all three of my lumps way way early, and I found them myself. Due to my history, doctors are pretty willing to get me tested. There is a girl I work with that has had and continues to have lumps under her arms and in her breasts, and no one takes her seriously. I say lump and my doctor jumps.
Our new awareness and willingness to fight this wretched thing will help all those who haven't walked where we have. That binds us. Glad to call all my bc sisters friends.
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