TRIPLE POSITIVE GROUP
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kathec -- Prior to surgery, I'll have done 12 Taxols/Herceptins, plus 4 Perjetas. I should note that we're pretty sure that one lymph node has been compromised (lit up on a PET scan and tested positive via fine needle biopsy). I guess if it's a lumpectomy, I want clear margins (like anyone can guarantee me that LOL) so I don't have to do further surgery. I'm also not that enthused about reconstruction right now because I've been working through chemo and won't have time off until May. But, lots of ladies in my situation are doing mastectomies and BMX at that. I'm just worried that I'm not being aggressive enough.
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Elaine Therese,
If you choose lumpectomy first, but down the road feel you really worry about recurrence, you can do a mx at a later date, even years later, and insurance will still pay for it, even if you did not have a recurrence. Talk to your BS about your options.
In April, I started with a lumpectomy because I wasn't ready to make any other decision. BS said I could chose an mx at a later date if I wanted to. Unfortunately I had "close margins" and was going to need another lump after chemo. With the added time to think about my options I chose bmx with DIEP recon because it felt right for me. I'm 5 weeks post surgery and very happy with my decision.
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Kathec, ElaineTherse might have done more taxols because she got smaller doses but more often. SE can be less this way.
ElaineTherese There are 2 thoughts on this. Old school feels that shrinking a tumor is not enough to warrant lumpectomy. The tumor can shrink like Swiss cheese therefore some stuff might be left that can't be seen by a microscope. This was my BS's approach but like I said he was old school. Many women opt for the lumpectomy and do just fine because if something is missed the radiation should kill it. Remember you can always get a 2nd or 3rd opinion on this.
It's more common for HER2+ tumors to be aggressive, fast growing and grade 3. Lots of us have larger tumors (mine was 5.5cm IDC with a total of 6.5cm including the DCIS). I did have the BMX but no nodes involved. Did recon with implants. Got a pass on radiation due to being in a gray area, such aggressive treatment and heart risk with rads. Tumor was in posterior region above the heart.
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Elaine-like you I had taxol weekly for twelve weeks, with herceptin and then herceptin for the rest of the year every three weeks. For me, side effects were far less than I thought they would be.
Marlene-I can't remember if SpecialK had hip pain, but I have for the past two months. I didn't really say anything as I thought it was due to Arimidex, or possibly the fact that I walked in a boot for 8 weeks on that leg after foot surgery this year. It had gotten bad enough to wake me up at night, however if I rolled over on my side. In talking with my temporary new doc, he did ask about arimidex issues and I mentioned the hip pain. He ordered a bone scan, but all turned out negative. So I am assuming it is one of the two things I thought it was.
My tumor was removed at biopsy with close but clear margins. It was near the chest wall. If I had chosen lumpectomy to follow up, there would have been some pretty significant reconstruction needed based on its location. And, I automatically would have been a radiation candidate. I toyed with a single mastectomy but PS said it would be hard to get them to look symmetrical, although doable. Ultimately, I decided, I didn't want the stress of worrying about what was going on in the good breast all the time, so I opted for a bmx with immediate recon. Due to infection, that turned into a loonnngggg process. Because it wasn't in my nodes, and because I chose the bmx, I dodged radiation. Don't know if that is good or bad, since it seems they do it pretty routinely now. I am happy with my results. One is a little smaller due to my body absorbing some of the fat grafting that was done.
I see me PS this month. We have been talking a little via email about options if I want to address that. Earlier this year, I was set to do that until Special K had some work done and ended up having to start over on one side now. That may have scared me out of being surgery happy. I would do the fat grafting again, but he was talking putting in a little bigger implant to make them even. Not sure I want to tackle that much risk.
The real ones weren't that great looking, and minus the scars, these looks better, so I might just be happy with what I have
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fluffqueen and Iago -- thanks for sharing your stories; I think it is interesting that you both got out of rads. My MO didn't really talk about that option. I think she took one look at my pathology/receptors report and told me: chemo (+ Herceptin), surgery, rads, more Herceptin, hormonal therapy. I was under the impression that radiation was a fairly tolerable form of treatment; just as I'm working through chemo, I was planning on working through rads. Am I off here?
debiann -- yeah, my first thought was to go with the lumpectomy. But, I might end up with close margins and more surgery, too, so I wonder....
Re: reconstruction -- if I opt for a mastectomy or BMX, is it more challenging to do reconstruction later on? I teach at a university, and the Spring Semester ends in mid-May. I could get my surgery during winter break and do reconstruction during the summer if I decided that that was the way to go.
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ElaineThere
This is the most difficult & most personal of all the many decisions you will be faced with in treatment.
I had neo adjuvant chemo and chose lumpectomy but it was a tortured decision and my second guessing lasted for a long while post op. I was guided by my breast surgeon's strong preference; the vast majority of the scientific data showing survival rates virtually even; the location of my tumor in my DD breasts; my node neg status; my pCR to treatment and most of all it came to this for me. My decision to do mastectomy would have been in order to have more peace of mind. I finally realized that, sadly, after cancer, you never really have peace of mind re recurrence.. No matter which you choose.
Good luck with your decision.
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Elaine therese,
Because I was node negative and the tumor was not near the chest wall, I was given the choice of lump and rads or mx and no rads. I chose mx.
If you are doing recon with implants I think it is just as easy to get the TE's placed during the mx. The permanent implants come later.
I had DIEP recon, they used fat and tissue from my tummy to form the new breast mounds. I am also a teacher and orginally thought the same thing, bmx now and recon during summer break. That was doable, except the my PS said I would get a better result by doing them both at the same time. Recovery hasn't been as bad as I thought it would be. I went back to work after 4 weeks. Because I had lumpectomy first, I have scarring along the outside of my breast. Going right to mx would have saved me a scar.
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Elaine, I chose lumpectomy because my tumor was 1.9 cm and no lymph involvement. I have a good friend who chose mx and reconstruction at the same time. She regretted not waiting until she had recovered. Her immune system was compromised to begin with because she'd been on steroids to treat a severe allergic reaction to latex (she was in the health field). She went thru months of infections and rejection to the FG. I know some women have no problem, so you can't base it on one person's experience. My rad treatment was a breeze. I'd heard some people get a lot of fatigue, but I didnt. It probably helped that the treatment center is 3 minutes from my office, so the daily trips weren't hard on me.
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ElaineThere usually with tumors 5cm or larger you get rads. Like I said the position/location of my tumor made it really risky as far as hitting my heart. Guess my RO (radiation oncologist) didn't think it was worth the risk…also note I didn't have any nodes and was a small 34B breast before surgery. I chose reconstruction with expanders because there wasn't enough tissue on my stomach. There are other more involved surgeries (taking it from your butt or thighs) but they are very involved and not every PS does that. To this day I am happy I chose implants. They first put tissue expanders in. You can leave those in for years. Actually if you choose to go this route and do radiation, the longer you give your skin to heal from rads the better.
But if you choose implants and get radiation do talk to your PS about how this works. It can be more challenging with rads and might require a few more surgeries. I do know a few people that didn't have issues.
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ashla, debiann, efcjax, and Iago -- Thanks for all your insights! I really appreciate your perspectives/information. Obviously, I am going to have to see what my scans look like -- I think we'll be doing both an MRI and a PET scan -- before I make any decision. Because one lymph node looks dubious, I don't think I'll be able to get out of rads (lump is on the right not the left, so no concern about the heart here either).
Re: reconstruction -- I could do DIEP as I have tissue available in my stomach (thanks, twin pregnancy!), but implants might work better if I do surgery, rads, and then reconstruction in the summer. Sigh; so many decisions!
I must say that being a triple positive seems like such a long slog. On the one hand, I know I should be grateful that I can take advantage of treatments like Herceptin, Perjeta, and hormonal therapy. On the other hand, just thinking of 5-10 years of Tamoxifen (? because I'm premenopausal I wouldn't be offered Arimidex?) makes it seem like I'll never be "done." All cancer sucks, but......
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I think of you chose to have your ovaries removed you can do the AIs.
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ElaineTherese you can also look into suppressing your ovaries with medications like Luprin so you can take an AI. You really need to have this discussion with your MO (oncologist) to understand what is right for you. We don't know all your health issues, family history etc. Also never feel guilty about going for a 2nd opinion. It's actually recommended for surgery and even oncology.
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ET, whatever you chose will be the right decision for you.
I had a BMX mostly because of family history. In my 2 aunts and my Mom, BC was in both breasts but they missed it in one. In my Mom's case, she insisted on a BMX and they found it in the breast they were not concerned with. They told her She didnt need chemo or anything else because they got it all. She passed 10 years later from BC. Not their fault, they did not know enough. When it was my turn, i did the BMX too; and they found IDC in the prophylacticly removed side so, I got chemo too but didn't need rads. I have had only 6 months of Herceptin because of heart issues so I do hope I had enough to make a difference.
All of the decisions we need to make, we can only do what feels right to us.
Much love
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ET-good info above. My PS also said if I was doing recon, best results come if you do it at the same time. You could get expanders placed and just keep them until you are ready to exchange. DIEP is a much more complicated surgery. Unless things have changed, ask your doc about the impact if you should need a cardiac cath in your life. I believe that the microsurgery attaches a key artery to that area to keep a blood flow, and it eliminates using your thigh area to do a cardiac cath. Just something to consider.
If you aren't squeamish, you can actually watch the whole DIEP procedure on YouTube by Beth Israel docs. I am squeamish, but decided to try. Very interesting. I did have to look away several times.
I talked with a radiation doc for his opinion before I made my decision. I wasn't worried about side effects particularly, but did like the option of having radiation still available to me in case of a recurrence on that side.
I was premenopausal also, even though I was 55. Doc put me on tamoxifen. I lasted just under three years, when a Pap smear showed endometrial cells (not cancerous) in it which was abnormal for my status. They (Ob/gyn and onc) attributed it to the tamoxifen, and immediately switched me to Arimidex. (I was thrown into menopause with chemo and bmx as my last period was right before the bmx). I've been on arimidex for about 6 months. It's not particularly pleasant, but better than the alternative. The temporary onc I just saw said results were still in the works for length of time, whether I would take it two more years to equal 5 or 7 for the ten year total. My late onc believed firmly in the ten year scenario, so unless something comes out, that's my personal plan.
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debiann -- I definitely would have taken out the ovaries if I tested positive for BRCA, but that test was negative. It's the only "negative" aspect of my BC so far! (Bad +++ joke.)
Iago -- I had no idea you could take Luprin and then maybe get an AI! I really need to start doing some research into hormonal therapy -- I haven't heard great things about Tamoxifen, but I DO want to take the right steps to prevent recurrence and maintain my health.
fluffqueen -- thanks for the tip about the DIEP YouTube video. Yes, I'm a little squeamish, too, but it would give me a better idea of what it involves. I'm sorry that Arimidex isn't particularly pleasant; I've heard the same about Tamoxifen, and I wonder about which is least pleasant. But, most of these treatments aren't very pleasant, are they? They're just what we do to stay alive and healthy for as long as we can.
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Hi Elaine,
I opted for MX because of position of tumor. Also an MRI showed possible cancer in other parts of the breast and I just couldn't deal with the uncertainty and didn't want to go through MRI biopsy which would have delayed scheduling surgery. So I had MX on left and it turns out there was DCIS and I think some more IDC. I also had no sign of lymph nodes on my scans (US/MRI) but after my MX they found three micromets (under 2mm) in my sentinels so they recommended i get an ALND- which I really didn't want to do. They found nothing more. It was much harder surgery than MX and TE.
Where I go in Boston, if you think you might have radiation you have tissue expanders put in at time of MX. Then you have all your fills before radiation. I had radiation even though I had an MX because studies showed an advantage when you have radiation and you have LVI or are node positive.
You are right in that radiation is something to be worked through like chemo. I wasn't really prepared for it while I had done much chemo research. I think if you prepare for it psychologically the way you do chemo, you will be fine. With MX, radiation can be harder on skin because they use a thing called a bolus to target top skin layers so skin might burn more. But I used calendula cream which was amazing, and my skin fared pretty well and now it looks just as good as it did before radiation.
I still have to schedule my exchange- it's been 2 years and I keep not finding the right time. But I do think it's a good idea to let your skin heal from radiation 6 months to a year before you have the exchange.
Chemo for +++ is a long slog- especially compared with other regimens- 2 months seems like nothing when you're looking at 5. . But you can do it. Remember it's a marathon, not a sprint. And there are lots of little tricks to help with the side effects. Chemo nurses are the best and know a lot- as do people on these boards! And we are so lucky to have all these awesome therapies even if we're unlucky to have somehow "caught" this disease.
Hugs!
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Elaine, I meant before going on hormonal therapy you can have your ovaries removed and do AI instead of tamoxifen. I am just about to start hormonal therapy. Since I had a partial hysterectomy 7 years ago, I'm not certain I'm postmenopausal, although pretty sure I am because menopause symptoms ended 2 years ago. Anyway, I told MO I perfer AI to tamoxifen, so he said if bloodwork shows ovaries are still working I'll be given the.option of getting them out so I can do AI.
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ET- I would say the toe things are equal but different for me in side effects. On tamoxifen, the really rad se I had was horrendous hot flashes....and I mean dripping ones, that I could feel coming on and actually made feel feel anxious. I had at least one bad one almost hourly and miler versions of bad generally three times an hour. It was embarrassing. Not everyone has that. Other than that, it was tolerable. My ob/gyn monitored me with a vaginal u/s every six months. Although after the weird pap, I got a second opinion from a gyno oncologist, who said he thinks the vaginal u/s are a waste of time, because you will have thickening of the uterine lining just by being on tamoxifen, so who knows what is right there.
I stressed over starting Arimidex- thinking the hot flashes could get worse. Instead, they are much, much better. The one good thing. I actually have worn a pullover sweater all day for,the first time in three years. Past years involved only things that could be stripped off. The last couple months, my joints have become extremely painful. And I've gained a few pounds, but my diet hasn't been the best either. I decided something had to be done about the joint pain. I had been on Cymbalta had diagnosis to help with anxiety and the potential joint pain taxol can cause . I really had very little. So I talked to my doc and we ran through some options, which included Celebrex, etc. I decided I might as well take something that helped with two things, so I picked Cymbalta to take the edge off and hopefully help joint pain. It has made an enormous difference. I have little to no pain and my mood is a lot more relaxed.
That's a long way of saying, neither is perfect, but they both have their role. There is one train of thought that if you are pre meno. A couple years on Tamox, then switching over to an AI is the best. Now the ten year thought is out there. My theory is that as long was we are taking one of the options, it has to help.
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I was reading up on that new genome test that is on the home page updates. So cool. I wish I could have it.
In my google search, I ran across this link. Do t know if any of you folks are in Pennsylvania, but this hospital is doing it for free.
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Elaine,
I am at the point of deciding on surgical options, too. Last chemo is also early December. Cancer mass was a similar size to yours, calcifications within where cancer appeared. Mass has shrunk a lot. Surgeon initially presented lumpectomy option, suggesting that the PC can nip a bit off my other breast at time of surgery to balance them out. This sounds great to me, radiation notwithstanding. BUT I want to hear different options from him too. I had no nodes "light up" on scans, but we never truly know until surgery. My cancer goes to the chest wall and is on the left. I have questions about rads and herceptin and the effects on my heart, too. My surgeon and his team are great, up to date on the latest, and will give me resources and answers. It is ALOT though, isn't it? I will let you know how the question filled appointment goes after we meet Tuesday. Thank you for posting your thoughts and questions. Very helpful to me! Jeni
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Jen-not sure if you have had an echo or a muga scan before you started but my onc ordered one every three months to monitor my EF throughout out herceptin. I had my last one at about 6 months after I finished herceptin just to make sure it had gone fully back up. I started at 65, dropped thoughout down to a low of 50ish right as I was finishing and then it was back up at the 18 month mark.
Good luck on all your decisions. It is a lot, I know
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thank you fluff. Yes I had the baseline echo before starting chemo on late August. Have not had another scheduled, expect that to be scheduled soon. Our hearts are important!
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debiann -- Oh, I see what you mean! Well, I never knew that was an option, either. I thought that the ovaries just came out as a precaution if you tested positive for the BRCA gene. Again, thanks for posting this info -- it's helpful to know what options are out there.
fluffqueen -- your experience is why I feel somewhat nervous about hormonal therapy. In some respects, chemo hasn't been that bad for me -- some side effects but nothing debilitating. But, I've always had a hard time with fluctuations in hormone levels -- I've had nasty PMS over the years, and wild mood swings during my pregnancies. Those hot flashes you describe sound scary, too. But, you never know with any of these treatments -- chemo was OK for me but really knocked over some ladies on my chemo board.
JeniferE -- good luck with your appointment! Let us know how it goes. Yes, decisions, decisions.
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Sorry I have been MIA, I have been moving my daughter up to Georgia for her first post-college big girl job (I'm still there) and she didn't have Internet until last night, we have been so busy I have not been looking at my phone. For those who asked me about what I'm doing about the hip pain - the answer is nothing, yet. I have my regular appt with my MO next month. I wanted to wait until then so I could observe the pain and see if it is consistent until then. If it is (hard to tell right now - DD's apt is on the third floor, no elevator, so everything hurts right now) I think the MO will order a PET since my center has their own. What concerns me is that the pain is only on one side, but there could be other explanations for that so I'm trying to be calm until I have reason to be otherwise.
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ashla , thank you so much for the response. As I read these messages with my daughter, they make us tear up with joy. My appointment with my doctor was at 4:45pm and perhaps we mis-heard or he mis-spoke. The treatment plan he recommended is in line with the treatments other women are receiving, you can't imagine what a boost this has given to my outlook. Thank you again, be well Anne Marie
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linda505, thank you very much for your kind words of reassurance. I've been reading the whole weekend on my situation, as I have been for the month since I was diagnosed. Honestly this site gives the best information that I have found. Especially talking to real people with the same real issues that I have.Today I go back out to Cancer Treatment Centers for 2 ultra sounds on 2 other lumps the doctor found last Friday. One in my abdomen, and one under my right arm (right breast had cancer). I'm hoping they are just fatty benign cysts, Wednesday is the big day when the tell me my treatment plan and I can move forward with chemo.
Bless you, stay well and keep in touch!
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lago , your response is comforting and informative. Such great news about you and your neighbor. My hopes are high, I am just starting down this long road. My daughter says thank you for sharing your story because our similarities are amazing. Today I go in for an ultra sound on two lumps the doc found last Friday, hoping they are nothing but fatty cysts. Then Tomorrow EKG and echo, Wednesday I get the final treatment plan. I'm anxious, this is all new and scary. Thank you for your kind words and information, blessing you for continued good health and helping others like me who are just getting started, Anne Marie
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Anne Marie keep us posted. This first part is the worst. Hate the unknowns. I too am hoping for B9 results for you.
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Annemarie - you are in my thoughts and prayers and hoping for benign results on those other lumps!
SpecialK good to hear from you - enjoy your time with your daughter and all positive thoughts on the hip pain.
Tomorrow is herceptin #9 for me - over the 1/2 way mark.
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Annmarie and all other newbies, the best advice I read when first diagnosed and interviewing docs was to get a tape recorder and tape the answers to your questions. I can't tell you how helpful that was, and how I remembered severL things differently than what they really said. I always asked permission and no one said no.
SpecialK-my pain was only on the right side. Nothing showed up on bone scan or X-ray.
Elaine-I can't say anything has been debilitating. The hot flashes come the closest. And I developed ways to cope. A remote control fan at night was a surprise gift from my husband. Game changer for sleeping. I had a chillow pillow. Love it. Keep it on my desk at work. Turn it on, turn it off. Repeat, lol. I also was in the dollar store one day and they had lacy Japanese fans. Bought 20 of them . My menopausal friends have benefitted by them, LOL.myfirst time I whipped one out, they were envious, so I have handed a few out.mi don't go into a movie theatre without it.
On the joint pain, it was pretty bad, but after moving a bit, it eased up. It did affect the length of time that I could work out. I didn't like taking Advil round the clock but that was the only thing that really helped. Now that I'm back on Cymbalta, all is good. I am looking at a yoga studios schedule right now!
And Pbrain's oncologist is on my list to call. He is on the other side of town, but is listed in a local top doc magazine, and my NP friend and her doc husband both know of and recommend him. So if I like him, I'm stopping there. He is in the same system I am currently in.
Onward and upward!
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