2012 sisters
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Hello Palmetto,
Welcome to the club no one wants to be in. Tazzy is right the waiting is the hardest part. Ask questions, lots of them, even the stupid ones!
You can also ask the wonderful women on these boards. They are a wealth of knowledge, and probably more helpful than any doctor :-), keep us posted, we are all in this together! -
Hi Palmetto.
Please keep us posted as to how you're doing!
Take care. -
Hi Palmetto, welcome to the group.
Sorry you joining us. Let us know how everything is going and come by as often as you need.
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So glad to find all of you wonderful ladies - also sorry about the circumstances. 2012 Sisters has a wonderful sound to it, we are all related now.
My story is so similar to all of yours. I had a mammogram on 4/5/12, the last thing I was going to do before switching over to our own health insurance. My intension was to retire on May 1st. Long story short - I was called back in a few days for an ultrasound, then a needle biopsy. It just kept getting worse. Next I met my surgeon and ended up having a lumpectomy on May 1st - it took me about 2 minutes to decide that course of action. I was like a robot soldier going to all of my appts, everyone was very kind but I was not functioning on all cylinders. My husband and I went to my appts. together but neither of us had any questions. We sat stupidly like deer in headlights. Everything happend so quickly, probably because I said please get the cancer out as soon as possible and they listened. Now that I know more, I still believe it was the right choice for me. I am not one to look back. I am cetain I was the easiest patient anyone had ever met! My lump was one centimeter and my lymph nodes were fine.
On Monday, June 4th I go in for a CAT Scan and tattoos. My radiation will be scheduled after they think I am heeled enough, right? I gather that is usually in 6 weeks after surgery. My diagnosis was Stage 1. I also had yearly mammograms and never felt a lump.
Needless to say, my Retirement is on hold. My boss has been great and is letting me stay as long as I need to. He is one of the first people I told. I think he could see the sheer panic in me. My husband also cried and finally I told my 78 year old Mother. She quickly sent out a group email to my entire family announcing that I have breast cancer. I could have died but what could I do, she is my Mother!
The incision under my arm was so painful and it is exactly where all of my bras wanted to rest. My breasts are too heavy to go braless. I found my best option was a halter bathing suit top. The lump under my breast scar had shooting pains and a large lump. I read someones post on here that the reason for ice pick jabs was that the nerves were reconnecting. Surgery was to my left breast, right in front and over my heart. The radialogist told me they do their best to avoid heart and lungs and that we only need one lung. YUK.
If anyone has anything to tell me before the CAT Scan, tattoos and 22 days of Radiation I would appreciate a heads up. Chemo was not recommended.
By the Grace of God - together we will all survive this!
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Believe, lay in a supply of thase swimsuit tops. You may well find you can't wear a bra after a certain point in rads. I was braless for the last week of rads and I'm ten days out and still can't wear one. (Of course I had 33 treatments)
Good luck!
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Palmetto-Sorry we all have to be here, I'm very young also (34), I just had BMX with 1 step to implants almost 4 weeks ago. Only after I started this journey I found that many young women like ourselves are being diagnosed with this dreadful disease.
Tazzy-I'm still doing my own research about why so many young women getting this disease, and there are still so many questions unanswered. Maybe its a combination of technology allowing us to fing it at its earlier stage instead of years down the line and the environmental changes. More and more chemicals are going into the food and water we consumed in the form of preservatives and pesticides and products we use like deodorants. I don't think its any ONE thing but the collection of many things contribute to this.
Have you ladies heard about the girl maybe about a month or so ago on a New TV interview (I can't remember which state it is now), she's like 10 years old and she had breast cancer. Mind blowing, right? She did BMX already at the time of the interview and she said that they also found lymph node involvement from the SNB during surgery and have to go in soon to take nodes out. Sad, very sad news.
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hi soya, omg, i thought surely you must be mistaken about the 10 year old so i did a google search and sure enough, you are correct. She is a little girl from California. She has had to undergo a mastectomy and will probably need chemo to ward against recurrance later on. What a heartbreaking story. It is also terribly sad to see so many of you young women on here. You should be worrying about babies and jobs and husbands, not breast cancer. The good thing is you came to this site where we can share our struggles, fight this crappy disease and be in this together.
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Oh and I just found out that a 3 year old girl from Canada had breast cancer and got BMX as well. Luckily no cancer in lymph nodes. What is going on with this damned disease!!!!! It makes me so mad!!! What is this world coming to?
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Soyaandpepper That is horrendous about the 10 year old and the 3 year old. I'll have to google that too but I don't know if I can stand to read something so sad right now. Was there any family history? I wonder if it has to do with the hormones in the chickens, cows etc these days. I wonder what similarities these poor little girls tumors have to ours like if they are ER + etc at such a young age. So many of you are way to young to have to go through this but babies and children that is unbearable. So so sad.
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soyaandpepper, an environmental cleanup engineer I know calls it the "environmental cocktail we've created" - everything from hormones, chemicals and lack of nutrition in our food and waterm to the quality of the air we breathe (including fragrances in everything and the materials and paints in our homes and buildings, etc...) I think that wraps up all the factors nicely.
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Very well put by the cleanup engineer. Also reports on the birth control pill affecting our drinking water and that of any seafood we take from the sea/rivers. All that estrogen we are 'peeing' into our environment. All the pharmaceuticals being flushed down the loos. Whatever is the cause, it is so very very sad.
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Tazzy I agree with all the estrogen in our environment. My tumor has to be getting it from somewhere and my body hardly makes any. At least it didn't when I was trying to get pregnant.
I'm sorry to see so many of you younger women on here. I don't consider myself old, but you are much younger than me and it breaks my heart.
Hope everyone is having a good weekend.
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I agree with you soyaandpepper, I think it is a combination of things that is making, not just BC but cancer, more prevalent. Technology has certainly allowed it to be detected much earlier than ever before (thank goodness) and all the chemicals and such that we have in all our food, etc, certainly can't be helping the cancer train. I have been doing some re-thinking about my lifestyle and I, like many I'm sure, have been making changes.
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Vickilind61 -- I have been thinking about what lifestyle changes to make as well. I have already moved to cold water fish (for omega 3's) everyday for lunch. Reduced red meat (and will probably eliminate it). Organic diary/eggs.
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I'm a diabetic for the last 10 or so years. I have been very negligent for a long time, eating what I wanted. Thus I am overweight too. Boy, it took a shock like "you have breast cancer" to change my way of thinking. Since diagnosis, I have watched and as a result have gotten my sugar under control. I was told diabetes and overweight make healing that much harder. I don't want things to be that much harder. It certainly isn't worth it for cheescake and other junk food. They are thinner than us and healthier in other countries. It's the abundance of junk food and chemicals and hormones and polllution I think.
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I completely agree with all of you about the chemicals, etc.... Since I began feeling out of sorts last Oct 2011, we try to only buy organic milk and eggs and try to purchase only organic meat and chicken. It's so expensive though. Luckily Costco sells all of these items (well the organic meat is ground beef but I'm good with that since we don't eat much of it). I also try to only buy seafood that is wild seafood.
And now according to my ONC, she doesn't want me to eat anything with soy in it because of the phytoestrogens in it. I thought "I'm part Asian, and how do I go without my soy products" - LOL. Anyway, I'm o.k. with it (I'll do what I have to do) but when I started looking closely at labels, I am horrified at all of the products that have soybean oil in it. So much I can't have, although I did find a Ben and Jerry's chocolate ice cream that doesn't have soybean oil in it so all is not completely lost when I'm feeling low.
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teeballmom-I've tried to start avoiding soy too, but it almost seems impossible. Not to mention I almost have to learn how to cook all over.
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Hello all. I am a newbie. Diagnosed on May 18th. It's like time stood still and sped up all at the same time! I also have Crohns Disease (a illness in the colon) and have been counting calories for the last 3 months (losing 22 lbs). I don't eat red meat, nut or seeds. I stay away from sugar for the most part and eat a lot fo fish/shell fish, fresh vegatables, rice and legumes. I have a girlfriend who is also IDC Stage I and was BRCA I so she just had a BMX. She is working with a nutritionist and is on a very restricted diet. I'm not even going to consider further restricting my diet right now - I've been doing that for years due my Crohns.
So here I am trying to decide between a lumpectomy and mastectomy on my right breast. I am concerned about radiation and effects on need for future reconstruction if i have a recurrence. I am awaiting my BRCA results. I'm a ashkanazie jew as well. I don't trust that I won't have a recurrence and right now my BS said she can do a nipple saving mx - that will be off the table post radiation. SO CONFUSED... but my gut says to get the MX.
I also received a wonderful job offer the day after my diagnosis (after two months of interviewing). I am trying so hard to no allow this to be a part of the decision making process. I have to just let the job go and stay where I am working now. Disappointing....
This is going to be quite the journey - so glad I found this site.
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Hi there Juneau, Sorry you here but glad to meet you. You couldn't be at a better place. I know, things get so confusing and there are so many decisions to make. I was not used to that. Lumpectomy or MX, recon. or not, what type of recon. It's sure sends you reeling...I was dx'd beginning of April first with 1 dcis 0 stage, great !! then after the MRI it was 2 spots but both dcis 0 stage, still yay and then I get a phone call. 2nd doctor looked at the slide and the second spot was actually invasive.... not as great... So now I need the SNB along with the mastectomy. All I can do is hope the nodes are clear. I'm also an ashkanazi Jew.... My sister was diagnosed the same week as I and our mom died of BC. (Sister just had a lumpectomy last Thursday).... Anyway, we took the BRCA test and it came back negative, thank you God... I have a 17 year old granddaughter and was really happy about this part of it. The rest will just go the way it goes. My advice to you is do your research, talk to your doctors and family and do what you think is best for you. I know that's not much of an answer, but that's what we each have to do. This disease is just not so cut and dried. You are correct - this is going to be quite the journey. The good thing is we can all take it together.
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Juneau- welcome and sorry at the same time. Make yourself at home here we are all here for each other. Sorry about the job too, I know how disappointing it is! I was set to start I job I couldn't wait to get too, but it required moving out of state. Can't change medical teams mid stream or lose insurance. Good luck with whatever you decide on the surgery, I haven't had to face that decision yet. Will in a few months.
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I had my CAT Scan today! It wasn't bad at all. Another sigh of relief. My 20 days of radiation start next week. I only turned on my computer tonight to thank all of you wonderful ladies. I have learned so much, on so many subjects, I can't even begin to express my gratitude.
I use an iPad and iPhone. I am able to read messages but I am not able to sign in and post any replies on the site. If someone knows how to fix my problem, please let me know. I will turn on a regular computer when I can. Thanks again.
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Thank ladies. Net the PS today and turns out my recent weight loss if 22lbs has left me to thin for flap surgery. So I'm having a unilateral mx on right with implants on both. That should leave me with a symmetrical outcome I'll be happy with. Now trying to figure out if the literature that says silicone requires bi-yearly MRIs to check them is accurate?
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Ladies...what was the factor that has made you choose lumpectomy vs mastectomy? Of course that is the burning question that we all have. I have been going back and forth about this and researched and am no closer to a decision. Any help/advice is appreciated!
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palmettomom, my initial decision was for lumpectomy was decided by a couple of factors:
1) survival rates were the same for my DCIS with lump or mast
2) the idea of keeping as much of my own boob as possible
of course, the decision was moot for me when my BS discovered 2 tumors during the mx. So, now I've had my mx and am working on reconstruction with a TE and then an implant. BUT, that was MY situation. Until I got that call, I was, I won't say happy, but I was content with my decision.
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palmettomom-I had a BMX with 1-step to implants, I had IDC on right breast (15mm)and an non cancerous lump on the left(which my doc said we should take out the same time). My choices were:
1) Double lumpectomy and radiation in my right breast
2) UMX with 1 step to implants
3)BMX with 1-step to implants
I did the 3rd choice because I didn't care about how much of an NON difference it would make with survival rate. My doc told me that the rates are the same regardless of lumpectomy or mastectomy, but I still don't really believe that in my heart. I didn't care about preserving my breasts ( I didn't see them as a symbol as a woman), all I cared about was getting rid of all (or as much as possible) the cancerous tissues so that it could never come back. I know I still have a 1-2% chance of reoccurance but its better than 6-7% for lumpectomy.
I didn't want to spend the rest of my life (I'm only 34) doing MRIs and CT scans a few times a year to have my nerves shot worrying about cancer being there. No way, I wanted to get on with my life and enjoy it. Cancer does not and will not own me this way.
Having said all of that, you are the only person who could make this decision by yourself and for yourself. Just remember YOU have to live with it, ask yourself "what decision can I live with for the rest of my life with no regrets?" Then you have your answer. We are all here for you no matter what.
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Like vicki, the choice was kind of taken out of my hands. I was originally diagnosed with one small spot of dcis, scheduled a lumpectomy as the doc told me survival rates were equal between lumpectomy and mastectomy. I went for an mri to make sure that was it and of course, it wasn't. They found another spot in a different quadrant to far from the first spot to make lumpectomy feasable anymore. It was supposed to be another dcis but it was later found to be invasive (a 2.5 to 3 mm tumor). So Thursday I get the SNB and UMX, right side. I kind of like the idea that I had no choice. I would hate to always be second guessing myself about a choice I have to make myself.
Peace and healing vibes to all of you who, like me, are having surgery this week...
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I did a lumpectomy first. My tumor seemed relatively small and the location would not be severely disfiguring (outer lower right outquadrant). The mammogram, ultrasound, and MRI showed nothing else. First pathology had a 4.5 mm macromet in the sentinel node (1/2) and some DCIS in the margins. I elected for a re-excision, again based on stats and trying to conserve the breast. I wasn't really hung up on saving the breast, but research told me that a UMX wasn't a piece of cake. I did not get clean margins, and ended up with a UMX. They found DCIS in 5/25 of the samples tested, several distant from the original tumor. None of this showed up on any of the original scans, including the MRI.
Because of the positive node and the Her2 status, despite the mastectomy the plan is that I will still get radiation. I did not have a ALND.
The one thing I promised myself is that I would treat myself with kindness no matter what the outcome. I knew I made the best decisions at the time and I can live with that. If I could go back, I'd skip the re-excison. Three surgeries in a month knocked me down. Best wishes in your decision. It's not easy, but it will come to you.
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My tumor(s) were in large bundle (5-8 cm) so a good size chunk would need to be removed. But so are my breasts and the surgeon felt she could give me a very nice cosmetic outcome. We are considering reducing the "good" breast for symmetry if needed latter on. I wouldn't mind going from 42ddd to something a bit smaller and given no close family history (my one aunt had bc) of breast cancer and they type and grade of cancer, an lx seem very doable. A UMX on the other hand? It's a bigger surgery, with a longer recovery time, and it didn't seem that reconstruction would be a piece of cake. Trying to match the remaining breast would be tough, so I'd still be looking at a reduction. As for a BMX? Well it just didn't seem like anything that was warranted now. If I have problems down the road, I'll reassess. At this point 3 months out, I'm glad I made the decision I did.
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Do any of you that were tested for BRAC know if you had the 2nd part of the BRAC test called the Bart test? My MO ordered the BRAC testing for me because of my strong family history. The 1st part came back saying that I was negative for BRAC 1&2 so I of course was very happy. But then my MO said that there is a newer part to the testing called the Bart test and my insurance, like many others refused to pay for it. Unfortunately it can reveal a genetic mutation that the 1st part doesn't. I found this video on CNN that explains it. Although they said the large arrangement mutation is rare, when you have had several family members at a younger age get breast cancer, you can't help but wish for the full package of BRAC testing so that you don't feel like what happened to this poor lady could happen to you too. http://www.cnn.com/2011/10/27/health/brca-genetic-testing-ep/index.html My doctor is hoping that other companies will be able to test for this stuff and that that will bring the cost of the bart testing down so I can have it in the future since Myriad's patent rights are being challenged. It's concerning too because many of these genes also cause gastric cancers as well as breast and ovarian. Anyway here is another interesting link which is a from Yale regarding the Bart test. http://yalecancergeneticcounseling.blogspot.com/2011/07/open-letter-to-myriad-genetics.html Even though it's rare, I do wish I'd have had the bart testing to completely rule out the BRAC. My Mo feels that when a woman has a strong family history of cancer, especially at a younger age, that that there is some type of genetic mutation at play even if it is not one of the BRAC biggies which makes sense to me but is not very reassuring as far as other family members not getting it too. Those with a strong history but that tested Brac - , have your doctors mentioned genetics or any other type of genetic testing? Do you know if you had the BART testing?
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vballmon wrote:
The one thing I promised myself is that I would treat myself with kindness no matter what the outcome. I knew I made the best decisions at the time and I can live with that.
I love that... we have so much information being given us, so many decisions to make. This really read true for me - thanks vball....was a nice post to wake up to...and reminded me to be kind and gentle with me TODAY !
Hope all you ladies are enjoying you days.
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