TRIPLE POSITIVE GROUP
Comments
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I choose a lumpectomy on the recommendation of my BS, even though I had multifocal BC the 2 (2cm & 1.5cm) they were close together and he thought I would have an acceptable cosmetic outcome even though I'm only a B cup. He did discuss mx but advised the lumpectomy which enabled a quick recovery and I was able to start chemo 3 weeks from surgery. I do have a big dent and my nipple points to the left but in a bra you would never know, I still have feeling which I like and have no regrets. It was great to get to the end of treatment and move on without having to worry about further surgery for recon.
I have yearly mammos and ultrasounds for and now I'm 3 yrs out I only see my BS and Onc once a year, so a breat exam every 6 months. I am not a big worrier and my BC showed on both mammo and ultrasounds so feel confident In yearly screening.
It's a personal decision and at the end of the day you need to feel comfortable with your descion.
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Jennifer I didn't really have a choice. My tumor was so big (they thought about 7cm but only 6-6.5cm including the DCIS) and my breast was small. The other breast had several suspicious areas. My BS said it would have to be biopsied every year and because of that he recommended a bilateral. One of those spots ended up being LCIS, rest were just cysts.
Knowing what I know now I'm glad they are both gone. Once you have breast cancer your chances of getting a new primary is higher than women that have never had it. Granted they watch you closely but when I think my tumor had to get to the size it did and my breast was only a 34B (barely
before they found it… after I reported blood coming from my nipple. I had dense tissue and my tumor was in the posterior region. I don't go for mammos anymore just physical exams. Of course my BS didn't get all the breast tissue but most of it is gone. I don't want to go through this again! I know there are some women that wish they did get them off but there are others that are glad they kept them. One other thing to consider is once they do radiation you can't get it again in the same spot.If you decide on lumpectomy be sure to discuss and agree with your BS that if s/he finds a more serious issue that would require MX that s/he can go ahead and do it. This happened to my neighbor. They thought there was only a small tumor so she was getting a lumpectomy. Once they got in there he found more and larger tumor and needed to do the BMX. Because he didn't have her permission he had to close her up. 3 days later she was back in surgery to do the MX.
BTW my DH seems to enjoy the new larger boobie prizes. He seems to prefer the lower cut shirts.
I think DH's are just happy that we are alive and still with them.I also know several women with young kids (including infants) that did the bilateral. I do believe they got help from family.
soltantio it's Lago. Everyone gets confused at first.
NOTE: just because you have an MX doesn't mean you won't get Rads. If you have node involvement you will get Rads. If your tumor is over 5cm typically its recommended. I got a pass because I was in a gray area. I think because of the location the Rads would have hit my heart and lung. My Rad onc weighed the risk/benefit and the fact that I was getting such aggressive treatment that she gave me a pass.
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Jenn,
I had a uni MX and my cousin exactly one year later had a lumpectomy. I was one of the MXs that had to have radiation due to nodal involvement and bad margins (I kept my skin).
My cousin and I just spent a week together on vacation and below are the biggest differences between the two. Now I noticed these, so obviously these things are important TO ME....hope it helps.
1. With lump and rads, when rads is over. It's over. Done. My cousin went on about her life. In fact, the lumpectomy only kept her from regular routine about a WEEK.
2. She wasn't trying to heal a major incision on chemo. (My MX opened up during chemo and wouldn't heal until I was done...over 6 months!)
3. I am still undergoing reconstruction stuff....she's been done since the lumpectomy.
4. Except for a divet in her breast, you can't even tell she had a lumpectomy and she still has feeling. She says she may have something done to it later to fix the divet, but probably not.
5. When they removed my breast, they found more cancer that didn't show up on mammo, US, or MRI. However, I do believe that would have been killed off with rads and chemo like it is for the rest of women who have lumpectomies.
In short....MX is much higher maintenance, more invasive, and takes tons more time to deal with. And I just had implants!! I can't imagine using other parts of my body to make a foob!
The only positive I can see now that I've done it ... a MX gives me a "little" bit more peace of mind. But since I have never had scans, I wonder now if I shoulda just went less invasive. In fact, if I had a do over, I'm pretty sure I'd do exactly that.
This whole reconstruction thing is painful, takes too much dang time, and I really wish I could FEEL. This whole process, devoting so much time, energy, and money on boobs.....well it's high maintenance, and I've never seen myself like that. And the whole thing about likely having them replaced for some reason .... ugh.
Again, these are things important to ME...others weigh their own and make the best decision for them. The time factor really is important. Cancer stole my security, and now reconstruction continues to steal my TIME.
Hate that.
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Fage 0% fat yogurt is a superior yogurt. It is richer, creamer has more protein and less sugar than say a chobani. But it is not cheap. About $3.50 a tub, which is almost two cups. Well worth it though.
You can find it in Kroger in the "organic" cooler. Most grocery stores carry it ... it sits right next to the other greek yogurt.
PB2!!! I can't believe I haven't mentioned it before!! If you love peanut butter, you HAVE TO TRY THIS STUFF!!
I love peanut butter, but the trans fats ..ugh, trans fat are proven to make you CRAVE MORE OF THEM. This stuff is 45 calories for 2 TBSP and only 1.5 gs fat.
You can "reconstitute" it with water (but I don't). I mix two tablespoons in with my oatmeal...and it tastes like peanut butter cookies!!
I put it in brownie mix, cookies, and yes even Fage yogurt!! It is one of my staples. I buy it at the grocery store on base, most military places carry it. You can request it through your local grocery...usually put beside the regular peanut butter...they've also got chocolate pb2 but I have never tried it.
Here is a faux Hot Fudge Sundae I like to make.....it is VERY filling (I use it as a meal when craving sweets) and satisfying. LESS THAN 350 CALORIES and 30 grams of protein!
1 cup Fage 0% (130 calories, 0 fat)
4 Splenda
2 TBSP PB2 (45 calories, 1.5 fat)
Mix together until blended and place in freezer until very cold and firm...not too long or it will freeze! In that case, just set it out on the counter until it thaws.
Smuckers Sugar Free Hot Fudge 2 TBSP (90 calories)
1/2 banana (50 calories)
1 TBSP slivered almonds (if desired)
Slice banana and put over around "ice cream"...heat hot fudge in micro, pour on, top with nuts.
So, for less than 350 calories you can make this and if you want to tweak it...take out the pb2 and add a little vanilla to yogurt instead....even less calories!!
It tastes like eating a hot fudge Reese Sundae. Made it for my cousin (who HATES greek yogurt) and she LOVED it..
If you try it...let me know!!
The one on the left is the regular.
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Sometimes when I need something decadent...I mix 2 TBSP of this hot fudge with 2 TBSP of PB2...(first warm the hot fudge in micro then mix in PB2)...Tastes just like a Reese cup....no real nutritional value tho...but still yummy for a 135 calories dessert!
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TonLee, thanks for the info on PB2. I've been eating greek yogurt, but the flavors, which I guess are high in sugar. Ill have to try fage plain.
Jennifer, I had a choice between lump &rads, umx or bmx. I chose bmx and am happy with that decision. All good points made above, and its really a personal decision. For me, it was mental -- even though BS said lump &rads would be as effective, I wanted them gone. I had a much harder time losing my hair than breasts, but again, that's me. My BS said all my choices were reasonable given my age and dx, and that he would support me either way. Him saying that helped me feel good about choosing the bmx. Good luck with whatever you decide.
For those taking B Complex, do you also take B12, and if so, what dose? And Im thinking of adding coq10 to my regimin - what dose of that do you take?0 -
shore - I take B complex, and an extra 500mcg of B12 and 200mg of CoQ10, all three in gummies of course!
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Thanks SpecialK!
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Jennifer - I did lumpectomy/rads because my rad onc said my lump was 'perfect for lumpectomy' based on breast size/tumor size and position of the tumor. I figure that if it comes back in the breast or the other breast has a problem I can do mx then.0
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Hi Ladies! Just a note to let you all kno that Reesie's info is posted on the Wall of Angels in the Commemorating Loved Ones forum. There is a picture of the beautiful flowers we all sent.
Love and Prayers,
Sue
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I'm new to this thread. Diagnosed July 27, 2012. Seeing surgeon again tomorrow. I won't know how far this thing is until after surgery. Having some insurance problems, and I want scans to know if it's also in the right breast, and mammo may have missed.
No choice but to take this journey, but I can choose my attitude. I think the saying FIGHT LIKE A GIRL is cute, but that's not good enough! I need to FIGHT LIKE A WARRIOR!!!0 -
Soteria Warrior.....like that name:) Kelloggs is the insurance guru. She may have some suggestions if you are having insurance problems. Good luck as you start this trip.
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Soteria my BS did an MRI after my biopsy in both breasts. There were 3 suspicious spots in the "good" breast. 2 of the spots were cysts but the other spot was LCIS. LCIS is non invasive and many times called pre-cancer. It typically doesn't show up in mammos. Also many BS do the MRI before surgery so they can have a better idea what's going on in there.
Hope you get the insurance sorted out. Not sure if you saw my message but call the American Cancer Society (ACS). I'm sure someone there will answer your question: 1.800.227.2345
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Anyone ever thought of doing radiation after mastectomy and nothing else? My surgeon just read an article about a woman that had a mastectomy 40 years ago with radiation alone and she is still here...thoughts appreciated.
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MemaSue56 - just looked at the pic of the flowers - they are so beautiful! What a wonderful idea and so nice of the florist to accomodate the request for single flowers. Just wish it never had to happen.
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nancedawg according to my onc there is a 40% chance all I needed was surgery… no chemo or ESD. Not good enough odds for me. She even said if they know who the 40% where they wouldn't put them through all this nasty treatment. So yes there is a chance you didn't need all this crap.
If I went to Vegas it would be for the shows and not the gambling. Can you tell.
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Nance,
My thought is what if there are stray cancer cells in another organ? Chemo will take them out (hopefully). I guess you just have to "hope" it didn't travel, and until we have reliable blood tests to test that...well....skipping chemo when HER2+ is an unnecessary risk imo.
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Soteria,
Welcome! I'm in Ohio as well
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Hi Ladies: Does the fear ever end. I've been having horrible back/rib pains and I'm getting concerned, of course. The rib pain has been there for awhile (same side as the surgery). Onc oddly enough sent me for an xray of the area and the chest and nothing showed up. Now the back pain is starting....now I did change running shoes (yep, I'm trying to find reasons for the pain). The back pain feels muscular and every joint in my body seems to be aching so wondering if the Arimidex is beginning to affect me.
I'm off to California to see my daughter and granddaughter, so it will have to wait until I get back....I keep telling myself that my every three month blood work is showing no changes so couldn't be Mr. C coming back to visit. On top of that, the darn port removal site is not looking so great and can't get into the surgeon but at least the nurse will see me in the morning.
Just doesn't end! I'm sure it is nothing but does help to vent!
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ArleneA hang in there. You will eventually feel better… except maybe some stiffness with the ESD. BTW my friend who is on luprin/Anastrozole (onco type no chemo for her) has some stiffness in the morning and that's it. Some people are lucky. It does sound like the Arimdex is giving you SE. My joints are especially achy in the morning and when I don't move around. Seems bone pain from what I've read is much more painful but since I've never had it I'm no expert.0
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Thanks Lago for the pep talk. Next month is a year on the Arimidex... I have a friend who is over 2 years on the Arimidex and she only has stiff knuckles in the morning and then it is gone.
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Welcome Soteria. It is always bittersweet welcoming the new ladies. You've come to a great place....there are some very knowledgeable women here and you'll find lots of compassion AND tons of information that will arm you well in the 'journey' (an expression I really hated in the beginning). LOVE your expression, Fight Like A Warrior!
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nance, my aunt was diagnosed with breast cancer around 1945. my mom said they told her it was a bad kind, but that is all she knew. She had a mastectomy on the one side and rads. At that time she was 40, and she lived to be 94.
Arlene, one of the reasons I wanted a pet scan was because I had rib tenderness and pain under my shoulder blad, both on the non cancer side. I finally had the pet scan and everything was negative, so I am assuming it is due to tamoxifen. I am thinking about getting one of those things that help keep your shoulders pulled back, because I feel like mine keep slumping forward and maybe that is causing the shoulder blade issue. I always had great posture, but it seems my muscles back there are weaker.
Hey Tonlee-what do you recommend to build the muscles back up inn the shoulder blade area and in between? I had a massage and asked her to focus on that area, and it felt so amazing.0 -
I love to swim, but am a real water wuss. I like it really warm. If it is cold, it takes me 20 minutes to get in, a little bit at a time. I can't just jump in. LOL
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Fluff, thanks for the info. That is what I keep hearing from elderly people. Surgery and Rads and lived 40 years..etc etc. Also, I am having the same problem with posture. I am only 2 weeks into surgery recovery, but I feel like I am leaning in because the stitches are so tight across my chest.
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Fluff,
Any type of upward row action will help with upper back muscles. (Bending at a 45 degree angle and pulling elbows up and out, hold it for three seconds, then back down.) Start with very little weight and build up until you can do three sets of 12, but the last set burns.
Also, just an aside...lol. You don't want to just work your upper back. You'll want to work your upper, mid, lower, and lats.
If you just work one set, then you get off balance, and the stronger muscles actually pull and make the less strong muscles ache, or in some cases even injury can occur.
The back muscles are the second largest muscle group in the body (legs are first) so any muscle you build there will burn the most calories...both while building them, and once they're built.
I suggest Glutamine powder with some protein within an hour after workout...this will help you build muscle faster and keep it.
Hope that helps
(You can Google at home body weight exercises for the back...or my favorite place is body rocker.tv0 -
My physio gave me an exercise for this today. I have a BMX with immediate free TRAM recon scheduled next month and he said this is the exercise to do in preparation.
Lie face down on a pillow under your abdomen and a rolled towel under your forehead (so your breast area is raised and not squashed). Arms loose by your sides. Raise your shoulders a little toward the ceiling and then raise your hands to the same level, keeping your arms straight. Hold the position for a count of 10 and then relax back down. Repeat 10 times.
This is to stengthen your back and the tops of your arms.
Jenn0 -
Haven't had chance to go through the pages yet. So this might be posted before. A friend told me about this so would like to share with other sisters. I am not eligible at this moment but hope some day when they expand the trial.
Here is where you can find that vaccine:
NeuVaxTM | Vaccine to Prevent Breast Cancer Recurrence
Prevention of Recurrence in Early-Stage, Node-Positive Breast Cancer with Low to Intermediate HER2 Expression
Clinical Trial Identifier: NTC0149244
Unfortunately this trial does not include Stage IIB patients.0 -
Thank you ladies for all of your posts about lump vs mx! It is such a personal thing and I appreciate you sharing your experience. I meet with both surgeons on thursday and will have to make a decision do we can solidify a date and plan. I will let you know.
Meglove- did I read the vaccine right? I think it said that exclusions include those who had herceptin? But were her2 + 1 and 2? Maybe I read it wrong. Super tired this morning so quite possible:( long night with sleepless babies:)0 -
jennifer - you are correct, it appears as though there is exlcusion if you have received Herceptin - this is for weakly Her2+.
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