A place to greet and meet newbies to stage III
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December, I've had the same experience of walking into the doctor's office seemingly healthy and walking out sick. Several times. The first was when I had ovarian cancer. I walked in to the GYN's office after being referred by my PCP and waiting 5 weeks for an appointment. Give that nobody seemed in a rush, I figured the "thing" that was seen on the ultrasound was probably no big deal and she'd just say it needed to be watched. No. The word was I might have cancer and needed surgery. I also only had thickening not a lump with my ILC. I always had thickening in that area so thought nothing of it, and neither did my GYN, until it felt different from the other breast. So the call saying I had ILC did seem like a bad dream. How could it be? The mammogram a few months earlier was negative! Hah.
I also agree that early PT is a good thing. I was never sent for PT. I guess that's because I had normal range of motion without it almost right after surgery. However, I did have some lymphedema (on the prophylactic side for heaven's sake!) and insisted on going to an LE therapist. I already knew her because I have LE in a leg thanks to the ovarian cancer surgery. She helped a lot. But why wait until things have been stiff for months before getting PT?
Win, have you asked your doctor about this new symptom? I had peripheral neuropathy show up in my fingers months after chemo ended. I have no idea if this might be what you have, but I'd ask the doc. I have the lovely hot flashes and sweating too especially at night. We're in the midst of a heat wave which makes it even more fun.
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2Tabbies, I feel your pain...thank you for your empathy. But of course....you understand. Your amazing how you have gotten through so much with so much grace! I could take a lesson or two from you and everyone here!
I'm going to nap a coupe of hours before my am appt! Blessings and Prayers!
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Hello, I wonder if anyone can live a stress free, good food, plenty of exercise life. I grew up near a ravine where DDT was sprayed from airplanes to control mosquitos. My childhood home was dirty, the food cheap, the care minimal. I survive on low wage jobs, bla,bla, bla, but I did not give myself cancer. There are millions of women with lives much harder than mine without breast cancer. There are millions with lives much easier, with breast cancer. Just like we are learning the science behind obesity, and need to stop treating obese people badly, we need to stop thinking cancer can be avoided by self control and a positive attitude. How about getting good quality affordable food into regular grocery stores again, maybe liveable minimum wages, and access to mental health care that can do better than just offering meds and stupid platitudes.
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December, thanks for the compliment, but I'm not sure how much grace I've exhibited. I'm still kickin' but not very gracefully. Just my usual cranky self. I hope your appointment went well.
Aliali, I agree about the meds and platitudes.
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Hello Aliali, loved your post, no one really knows do they? We had mosquito foggers driving thru the neighborhood... my grandma and aunts did not, yet they had BC.... who knows, we are certainly not to blame. I do wish it wasn't so expensive to buy healthy food. I agree with you whole heartedly.
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Hi All,
Wow after I posted on June 17 I kind of took a semi break from visiting everyday so I totally missed that some of you responded to my post. Thank you for responses. It's been 2 months since surgery and I have a PET/CT scan tomorrow. Feeling totally nervous and obviously have to forgo my nerve calming glass of vino tonight. Thank you all again.
warm hugs
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Gaia, how did the scan go?
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Hello All
I recently was promoted from IIB to IIIA - thanks to lymph nodes. I completed chemo two weeks ago, and am scheduled for surgery on 9/30. Post-chemo imaging shows a complete response in the nodes, shrunken tumor, but with cancer remaining in the breast. My surgeon says because of the response, it's worth it to try for the lumpectomy, but can still have a mastectomy. I'm really struggling with the decision. Both options scare me. I'll have radiation no matter what, so that's not part of the decision.
I'd love to hear your thoughts. Thanks.
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pennsysgal - I chose a double mastectomy because I didn't want to ever have to deal w/it again. Of course that didn't happen, but I'm still glad I had the BMX. It's such a personal choice for each one of us. Wishing you peace soon with your decision.
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hey pennysgal. I had a bmx because I had too many cysts and very dense breast that they just could not see anything to be preventive. Can they monitor you well eniugh going forward? As well they said they just couldn't let me keep the girls it was just too risky for reoccurrence. So if it were me i would just look at all the risk factors and make the decision based on that as well as how comfortable you would be with recon if you went that way. Having breast and feeling in them was very important in my sex life and now that feeling is gone. But I didn't have a choice. Big decision and I wish you the best.
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Thank you Minustwo and live. They are telling me that risk of recurrence is low, and that I can choose to have 3D mammos. I'm glad you asked the question
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pennsygal...sorry u had to join this board. As you said neither decision is a good one. You have to decide which one will be easier to live with moving forward. If they don't get clean margins with LX will you you be prepared to have 2nd LX? If you choose LX will you have a lot of anxiety every time you go for your mammo and wait for results? Will MX give you greater peace of mind or will losing a full (or both breasts) be worse than the anxiety of yearly mammos? Only you can decide - no one else - At the suggestion of my first surgeon I opted for KX even though in the back if my mind I knew it wouldn't work and of course we didn't get clean margins. She couldn't do the BMX for 4 weeks do I went with her colleague (who I lived) and had BMX 2 weeks later. Glad I did cause there were multifocal tumors and my other breast had something ( can't remember name) that increased my risk for developing cancer in the future (nope-cancerous just increased risk). I also knew I would dread yearly mammos on my one breast and would always worry they were not finding something - just like they missed my ILC in my left breast. Again - it is such a hard decision. I wish u strength and peace as u move forward and whatever decision u make will be the right one for you. No looking back - just look forward! Hugs, candy
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Pennsy - Looks like you're not HER2 plus, so if you take Ts or As for the 5 or 10 years they recommend, that probably reduces your risk. Sounds like you're talking about just one side? How many nodes were involved? Will you still be having auxillary node dissection? I agree with Live about the sexual response. It is a trade off but I just wanted them gone and have not had any reason to regret my decision.
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It is a very personal decision, I took my surgeon's advice and had a lumpectomy. The risk of it coming back is no differen. I have 3D mammograms and see my MO every 3month.
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NY2 - at this point, if they can't get clean margins, I would opt for MX. Based on MRI, nothing is happening in the other breast. Minustwo, just one side, yes. Initially they saw about seven nodes on the initial MRI; post chemo those all look normal. I was originally scheduled to have an ALND, but now she is going to do sentinel node biopsy instead. I will be having radiation no matter what, followed by tamoxifen. Annika, I'm leaning toward taking my surgeon's advice as well.
Thank you all so much for the responses - it's really helped.
Barb
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Well here is my first post. I started as stage II with IDC 2.5 c tumor and one DCIS 1c. After MRI they found several more satellite tumors now I am at stage 3 tumor grade 3 and 5.8cm by 3c total area. Going for bilateral MX soon and will have PET scan next week, waiting for gene testing, but all is surgeon is waiting for me to make a decision on recon. I just don't know know if i can face the long process involved in recon. I am a tall large women with larger breasts I want to look balanced, but just feel nervous about them process a and mulitple surgeries. anY one Know if recon interferes with future diagnosis? Any other thoughts
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Welcome TallnTerrific, I am sorry you are joining this club. Recon is quite doable and if all goes without major complications you won't need multiple surgeries. Have you seen a plastic surgeon? What type of recon did (s)he recommend? Is radiation in the picture?
I had BMX with immediate reconstruction with expanders, and an exchange surgery several months later to replace expanders with silicone implants. I did not require additional surgeries or adjustments of any kind. The exchange surgery was very easy. You can see the timeline in my profile below.
Good luck!
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Tall- My plastic surgeon told me that the implant reconstruction actually makes it easier to detect a recurrence. The implants are under the chest muscles so in the event of another lump it would typically be felt on top of the implant..
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Tallin, Here's my 2 cents worth. I had a BMX May 5th, which surprised all the doctor and myself as the ILC tumor was 5cm and not less than 3 as previous images suggested. During the BMX, I also had the beginning of recon with TEs. But after my surgery, it was confirmed that chemo and RADS would be needed. I can't have the final exchange surgery until 6 months after Rads (something about changes in the skin) So, I'm stuck with these aweful TEs from this past may, to probaby about May 2016 or even summer. So that's a year at least, of living with the TEs. Only because the radiation treatment was not expected at the time of the surgery. Had things gone as planned, even with the Chemo, I would be able to do the TE exchange this winter. I'm all for the recon - it's just a matter of when you want to start it - and there are pros and cons either way. It was nice to wake up with little boobs after the surgery - and I've been able to do the fills when ever I want ( no rush anymore)....But that way I had 2 surgeries at once - which was nice - but having to live with these TEs (rocks) for so long has been very uncomfortable. And knowing that I will have to live with them for many more months:( However, I am glad that I have "breasts" and can wear my C bras again - so I look "normal" with clothes. Knowing what I know at this point - I would have waited until after the RADs - I mean, I'm not winning any beauty awards right now with my bald head and pale skin....so having breasts that look normal under my clothes doesn't seem to be near as important and having the day to day discomfort of the TEs. Besides, I think that some doctors now do direct to implants - and you can avoid the TEs completely. You really need to talk to a couple of PSs.......Make sure you find an excellent one. (BTW, I have a friend who stayed flat, and loves it! Best wishes and Prayers for you!
Dang - my beloved Vols are in overtime after being ahead the whole game!
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thanks to all of you for the responses. It is good to know that the recon will not make discovery of recurrence more difficult. That is truly my biggest fear. I see the PS tomorrow and get the PET on Wednesday so will know more then. It just seems so difficult to have to make the decision now when I am most concerned about defeating this disease. I really appreciate this site. It seems like the only place I can go for honest information from people who are going through this. My mother has had BC TWICE but it is hard to talk about the more personal issues even though she can do that with others with BC . Anyone else experienced this issue with with a parent?
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Oh and yes I will likely need radiation of the whole left breast area including clavical nodes. That is one of the complications for recon. With multi focal or multi centric tumors they have to consider that. I know tey will have to deflate the right side to do the radiation on the left. Does anyone knows if they just leave the rt side flat after the surgery or can deflate it right before chemo
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TallnTerrific, when you talk to the PS tomorrow please ask about his/her approach if radiation is needed. Many institutions including Sloan Kettering prefer to do the exchange surgery before radiation because the skin does not heal well after radiation. One needs to wait for at least six months post-rads or longer and there are still many failures. I consulted several specialists before deciding whether to have exchange surgery before or after radiation. Had it before rads and am happy with the results. Please PM if you have any specific questions.
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Thanks Muska, the radiation onc said it could not be done before as she needs to have the right breast flat to get the right angle on the radiation on the left breast. That was at least her thought with theTEs. She said natural breasts move to the side, but TEs don't move and it would be difficult to angle then radiation. I will ask if the implants will move to the side if they are placed first. Thanks so muvh for the idea.0
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Interesting. I got radiated on the right side with silicone implants in and my RO never mentioned any "angle" issues. I had whole breast radiation including supraclavicular and my implants are 500 ml, i.e. not small. They do not 'move around'. I am not sure what your RO meant by moving breasts to the side - usually, you lie on your back and the machine turns around you to direct the beam from the correct angle. The beam gets through silicone implant without any problems.
It's a bit trickier when the left side needs to be radiated. In some cases, prone position might be used to minimize impact to heart. Have you asked your RO about prone position?
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on my first radiation treatment my left breast was in the way of the angle of the beam. They taped it down out of the way and I thought there was no way this can happen 32 more times. Then they rewrote my plan and angle and no more taping required. Nor did they need to deflate my expander. So it can be done. They said that just happens with expanders so they are used to it as there are unfortunately plenty of us that have this disease . good luck with your decision but know you can go over any of this stuff with us here as we've probably been through it too.
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I will be having the left side radiated and she said it is because of the risk to the heart, coronary artery and lungs that she would come from the angle and would need the right TE deflated. That may be the reason for the difference.
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Tall, I'm sorry you got to join this select group. you've gotten lots of input, but I thought I'd tell you my perspective. I didn't know what I was going to want to do regarding recon at the time of my mastectomy. I thought I might not mind being flat, and the PS I consulted said I could have "any procedure I wanted at any time." Since he said that, I decided to postpone the decision. Only later did I find out that radiation has a big impact on recon. As it turned out, I detested, being flat. I gave it about 10 months to see if I'd get used to it, but I just couldn't. I figured I'd just get implants, but both PS's I consulted at that time said the failure rate after rads is too high and recommended a flap procedure. In fact, the PS I chose, flat out won't do implants after radiation without a flap. Radiation thins and weakens the skin and muscle and reduces its blood flow so it doesn't hold up well to implants. It also has a higher chance of capsular contraction. I was pretty pissed that I'd been misled. The only flap procedure I qualified for was the latissimus dorsi flap so that's what I got. I'm happy with how I look in clothes. Without clothes, well, it could be worse. The scars and flap of skin from my back are pretty obvious but should improve some with time. Bottom line is that I wish I'd come to this PS for a second opinion before my mastectomy. I thought of it, but because of what the first PS had said, I opted to wait. Lesson learned .
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My experience is that I love being flat. I sleep flat and go out that way as I please, but if I like, I can wear a microbead bra that makes me look like my old 32C self. I also have silicone breast forms that I use with fancy bras for special occasions. I like having a variety of options, and it's cool to have the option of taking off my breasts.
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JenPam, I wish I could have felt the same as you about being flat. I know quite a few women are fine with being flat. Unfortunately, I hated having to figure out every morning how to dress to look decent. Which type of prosthesis to wear or whether to drape a scarf around my neck. It was a constant reminder of breast cancer. I tried all the different prostheses from silicon to microbeads and found them all uncomfortable. They tended to ride up. I felt like my boobs were climbing up to my collar bones and was constantly readjusting them. How do you get them to stay put? With my implants , I don't need a bra at all. I don't have to think about anything when I get dressed, and they definitely don't shift around on me. I'm glad you found your comfort zone. It took me a bit longer to find mine.
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2Tabbies, I don't know why my foobs stay put...they just do. I'm sure I'd find the whole shebang much more frustrating if they didn't! Most of the time, though, I go out flat and find it freeing. Maybe it's some emotional coping mechanism. I also like walking around bald, so I might be odd.
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