2010 Sisters
Comments
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Barbara, I hope you had a nice Christmas. It has not been a normal December weather wise for us here in Florida.
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lee7-my onco score was 23 but I did not have any node involment. My med onco did not feel chemo would benefit me all that much and the side effects would be worse. But again I had no node involment.
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Every three to six months, for years, I had one kind of test or another. First an ultra sound, followed by the mammogram, an MRI, returning to the ultra sound, or a needle biopsy, core biopsy or a surgical biopsy, and repeating the cycle until, finally a diagnosis. After probing that many times, and for that long of period, you would expect to hear you have cancer! NOT...
I was diagnosed March 29, 2010; Stage 0! It was not recommended I wait; but truly how many individuals decide to wait and then it moves to a Stage 1 or beyond? How much longer could I have had? Would it have ever gone from 0 to 1? Stage 1 still would have been early, right?
I studied lots, talked to others with cancer, listened to all, but now I feel I could have gained more information before my making a decision. My decision for a double mastectomy was based on my history, my family history, the information I was provided and research. Why am I second guessing myself, the surgery is over?
The initial problem was in my left breast, but after further testing the right breast also showed signs of cancer. Most unusual to have both breasts infected at the same time. Choices were given, and for me the lesser of all was to endure upfront. No Radiation, Double Mastectomy, and a Tram (I needed to get something out of a bad situation, and less tummy fat would be good, plus no artificial parts).
Surgery was on June 11th. A few days after the surgery my surgeon reads the report: Cancers proved to be in both breasts; cancer shows to be different types; although the cancers are in the same family, and are hormone receptive. Four nodes were removed from left breast, five from right; none had spread to the lymph nodes. Chemotherapy is not necessary, but Tamoxifen is recommended for five years (no thanks).
I know I am blessed with wonderful and skilled surgeons, but I can't help thinking - Stage 0, I should have waited to see if it moved to a Stage 1. Who has waited? Is there anyone who second guesses themselves after the surgery is done?
I had a tram, my third surgery is coming up; it is not easy. Thanks for family and friends I have support that is uplifting and very gratifying. I work full time, am very active in the community, I meet weekly with a newly formed local Cancer Support Group and my Plastic Surgeon has asked me to help form a couple's support group, so research is important; but I still have this nagging question. Who has waited from Stage 0 to Stage 1 before making a decision to move forward on treatment? What treatment did you choose?
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Thanks Barbara, I really will appreciate the support.
Kira1234 , I see you're in FL too and yes...winter is winter here today. I think I've lost most of my plants to the overnight freeze. What chemo did you try?
grizzly1, I think our dx are close and you did he chemo. What kind? I'm really wondering if how much of a difference the type of chemo can make. I don't want to talk myself out of the right one.
Sherryc- Thanks, I know its those nodes that have me worried and feeling I have to do chemo. I'm hopeful that if any bc got through those nodes that maybe the Onco of 20 for me will mean it isn't growing too fast out there....
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Last dose of chemo was Dec 27!!! Starting rads on Jan. 20 for daily dosing x 6 1/2 weeks, which lower the recurrent stats of skin BC to 5%. I will take the odds!! Ready for hair and returning to work. I miss my job, I work for the best company, they have been very supportive.
Ladies, you can do this, it is hard and is probably the hardest thing you will ever go thru, but hang in there!
Peace and years of laughter,
Cheryl
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lee7 I've lost most of my plants as well. Last year we covered many and still lost them so this year just gave up. I was on TCx4.
Sherry, Boy do I wish muy first Onc. had been like yours and said the SE's would be worse than the benefit. I'm still dealing with the SE's from the 1 treatment I did have. At least I'm finally improving and the BS thinks I will be ok. I also had no node involvment and a score of 24.
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Hi Kira, had a great Christmas. Thanks for asking. Boy, I do count myself among the lucky in that my cancer was early stage, and had a low Oncotype score so I chose no chemo. I have a high stress, demanding job that I love and chemo would have put a serious crimp in my work this past summer. I also toyed with the idea of a BMX but that would have required a 6 weeks recovery as well as additional surgery so I feel blessed I was able to opt for lump, no chemo and do the Canadian Protocol for rads (16tx). I was able to keep rolling with the job, although I couldn't travel from mid-May until mid-July. But they made up for that...I was out of town 1-2 days a week every week from July 9 except for three weeks up until Christmas. Whew.
The next couple of months are slower, so I can chill.
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Barbara, what was your Onco score? I also had a very early stage cancer, but with the 24 score it put me in the gray area. My new Onc. says he would never have suggested the chemo I had and as soon as given after radiation. I had the Mammasite treatment which was great. 5 days 2 times a day. Just wish I had followed my feelings about the first Onc. and my needing more time to heal after the radiation. One thing I have learned when your gut is telling you something at least listen and ask questions.
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lee7 - Welcome - sorry you have to be here with us. I can't help with the chemo issues since I did not need it. My onc did not feel he had to do the oncotype. But I do know there are other ladies that can really help you and all of us will be here to support you.
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Kira, my score was 17. High side of low but OK with me. I feel good about my decision.
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If I was able to catch my cancer @ Stage 0, I would have treated myself the same way minus the chemo. I would have just done the BMX and then reconstruction, and try to live as healthy as possible thereafter. I am high risk if I had known HOW HIGH I WAS I would done the BMX before things developed and took better care of myself better.
And I am like most on here I only vent here. I am not a part of any group besides this one. People know but I have not done an all out broadcast either.
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Fighter, I agree I only vent here. My loved ones don't need to know how often I think about BC. I chose to have a lumpectomy, but will say if it comes back I would not hesitate to have a BMX done. I chose the lumpectomy at this time more because I didn't want to take so much time off from work. Boy that didn't really work out, I've had 6 months off and had to practically beg the BS to let me return. So now I can work but only lift 5 pounds. Well that's really hard to do, but I'm really trying.
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Barbara, You have been an insperation to me just how much you have researched and made your own decision all along the way.
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Kira, it really sucks that you have had such a hard time. I was very blessed to have a lot of things fall in my favor. Thanks for the 'atta girl' on my research. My onc isn't too happy but he is going along with me for now. So I just need to go along for the next 10m years with no recurrnace then I can say 'told you so!'
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BarbaraA- I think we should start a new "I told you so" thread. I'm planning on telling my traditional medical Onc "I told you so" too in 10 years. You have been a great help with my turbo-propelled education! Happy, healthy New Year!
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Going for my first mamo since diagnosis tomorrow AM. Not looking forward to having the "girls" squished! Have trouble at the incision site so hope they're kind to me. UGH.
Granny hope you made it home OK. Haven't heard from you.
I don't get on the computer until most of you have gone to bed.... so hope you sleep well.
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Hi Lee7
I had 4 A/C treatments and 12 taxol , My last one is on Monday.. I am ready to do the happy dance... I will start Tamoxifen in another month.. Treatment for me went well.. The pre meds these days are a God Send.. Everything I decided was my choice the Onc made that clear.. I wanted the best odds so I went for everything, took off my entire breast took out 27 lymph nodes and chemo/ oral meds. my journey has been a good one... I tribute alot of this to positive thinking and faith...I look forward to 2011 and what great things will come.. keep in the loop on your decision.
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IM HOME.SAFE AND SOUND...thanks my sistas for caring.Glad to hear most of my sistas had a good Christmas.I did too in spite of missing 2 tx. of rads.I think im goinna make the medical books on the longest tx.i started in Dec.the way it looks now without anymore delays ill go into feb.this month is 1 yr.since i found the lump.
its freezin in NJ.we got 20-25 inches of snow.my GS said brooklyn got 30.PA got a dusting.
tomorrow is tx #8. im actually lookin forward to it.
good nite all.thanks for the concern
huggggggggggs
k
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Hello Iago;
Iam new to this. I was diagnosed in Feb/2010. Have had 2 biopsies. I was diagnosed with cancer(1.8cm, Stage 1 Grade2) and DCIS in right breast and had abenign tumor in left. The margins were slim so I had another surgery and they found more cancer and DCIS. I have had 4 rounds of chemo and now have to descide what to do. My surgeon says he feels I should have a masectomy for he feels my breast is unstable. Every one else says that radiation would give me the same results. (but if I have radiation ,I would have to have another surgery to remove more area for the margins were once again slim in my last surgery) If I go with the masectomy I would likley just do both , simply so they were the same and because I have had a few benign tumors allready in the other breast and also have very dense breasts. I am conserned with how I will feel about my self after having the masectomies.( I would have the expanders as well.) Can you or any one else share with me how they felt after reconstruction and would you recommend doing both. I would welcome any comments you may have.
Wishing you all the best with your journey.
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Polly6 This is so personal so no matter what I say you really need to decide for yourself. Breast removal is not only about image change but you do lose sensation. In most cases your nipples are removed too. I'll admit I miss my right nipple during sex. It was the sensitive one but I get over it ;-) It also puts you at risk of lymphedema even if no nodes are taken. Granted I have some slight lymphedema on the side I had 10 nodes taken… it's not that bad to live with. A headache is much worse.
Seriously I have no regrets. I had a very aggressive fast growing tumor in my (very dense) left breast. My right breast had a small amount of LCIS that was only picked up by MRI. That breast would at a minimum needed a lumpectomy to removed the LCIS and a lifetime of close surveillance.
Bottom line for me I didn't want to go through this again. I just had my 5th round of chemo yesterday (1 more to go). I'm quite happy I don't have to worry about the other breast. I rather have no breasts if I can avoid dieing of cancer or more cancer treatment.
As far as reconstruction. I have tissue expanders now, partially filled. Waiting for chemo to be over to continue the reconstruction process. TE are strange looking so don't expect them too look as nice as the finished product. Nice thing is I don't wear a bra. If you decide not to do nipple reconstruction or just have the nipples tattooed on you won't every have to wear a bra. If you do have them reconstructed remember they will always be erect so you will need to wear a bra or some kind of nipple covers.
I was not a candidate for tram, DIEP or latissimus dorsi flap since I am too thin on top. Gluteal free flap or thigh flap involves micro-surgery and can have a risk of failure. Personally none of these are right for me. I would rather go with an external prosthesis then have more scars on my body. If the implants don't work out that is exactly what I plan to do.
One thing I've learned in the past 9 years is our body's age/change. I am 49 so those changes are happening quicker. It's a sign of growing older… growing older is something I want to do. Boobs or no boobs I want to be an old corpse someday. I have so many years to live and I want to keep it that way. I'm so glad that if I had to get cancer it was in my boobs and not on my face. Now if I had to remove an eye or nose then that would freak me out. ;-D
After surgery I was so happy the cancer was out of me that I was less concerned about how I actually looked… and I looked pretty wierd since there was a lot of swelling in my torso back then.You do get used to how you look after a while. I was even happier when I didn't have to deal with those drains.
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Good luck. This can be a tough decision. For me it wasn't. I was considering removing both of them before the MRI caught the LCIS. My BS didn't really support the idea of removing healthy tissue but when the LCIS (and 3 other suspicious areas) lit up he recommended the BMX. We didn't even know it was LCIS till after the BMX although I think my BS had a pretty good idea it was. He stated that that would have to be biopsied every year depending on what it was.
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Ditto for me Lago. I have a very similar story and it was an easy decision for me. Momoffour has a friend with a good name for the expanders, Sponge Bob Square Boobs! Polly good luck with your decision. I'm sure you will choose whatever is best for you. Like Lago I am partially filled and have one more chemo. The drains were a pain in the ass but not painful. The expanders are hard but they need to stretch out muscle. For me, it doesn't hurt when I have them filled. I just feel taut and when they do the fill it feels like when milk descends while breast feeding. Again, good luck with this very personal decision.
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Polly6, I had both my breast removed this year, I also had the tram at the same time; it is a long and hard recovery. Yet once past the major pain and discomfort and knowing you have loved one supporting you I guess it is not so bad. I have lots of positives and many more blessing to live for.
Nipple surgery is the first week in January, leaving only the tattooing to be done. Numbness remains in my abdominal area as well as my breast. Seeing myself for the first few months and even now is difficult. My husband has still not seen me. Guess the pictures I saw mentally did not apply to how I would look.
Although I am part of a support group it is not sharing or talking about your circumstance or emotions, it is more speaker involvement and what you will or could experience and what is available to help cope with the situation(s).
While recovering from the first surgery it felt like my beverages and food were looking for my stomach, everything stopped in the chest area to wonder around before finally settling to the proper area. My first surgery was 13 1/2 hours and the reconstructive (2nd surgery) 7 1/2 hours.
Whatever decision you make I pray you don't second guess yourself. Peace of mind is extremely important. Ask all the questions you can think of ahead of time. Ask questions and research everywhere and whith everyone you can think of. Each of us is an individual with individual needs, only by searching within yourself can you find comfort in your decision.
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samsue - Good luck with the mammo today. Crossing my fingers for good results. I don't have my first one until June and I am not looking forward to it either. My incision is under the nipple and the thought of that area getting squished makes me cringe. I am not every big and it would hurt anyway.0
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grannydukes glad your home safe and sound and that you can now get back on your rads.
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samsue-Good luck today. I have my first mammagram next week. I agree not looking forward to it either. I also have issues with the surgery site, like still not completely healed.
grannydukes glad your home safe and sound.
jo I agree the location of the incision sure can add to our concerns.
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kira - Good luck on your mammo next week. You will have to let us know the results.
samsue - Waiting to hear your mammo results.
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Polly6 - I had a BMX done in Sept 2010, There was a lump in my right and after FNA to nodes on both right and left side I decided to do the BMX and I had to convince my BS that is what I really wanted. After the surgery she told me it was a good thing I had decided to go that route because both breast were filled with cancer ILC. I have ther Tissues Expanders in now and will have the permanent implants put in Jan 6. I am very pleased with my decision and will be glad when the TEs come out. They are hard and look a little odd, but the final result will be much better and look more like natural shaped breast. I will not have the nipple reconstruction done and not sure about the tatoo option yet. I still have a lot of numbness in my chest and under the arms and along the back side of my arms. My DH is so supportive of my decisions and I feel that they were the right ones for me. I did have 3 drains in for about a week after my surgery but they were not that bad to deal with. I have not had very much pain at all with any of this and they surgery to replace the TE with the permanent implacnts will be an outpatient proceedure and I should be back to my normal activities within 2 days.
Wishing you all the best with your decision. Amy Jo
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Has anyone heard anything or been prescribed Evista instead of tamoxifen or an AI? Thx0
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The mamo went better than I thought - squish wise. The tech took extra care for the placement and worked slowly with the machine. Won't know the results until next week. They took 3 slides on the BC side and only 2 for the other. I had to wait to see if they needed more films done. Nope, only the 3 were needed.
Granny - did you say 20 inches of snow? How can anyone move about in that?
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YES I DID SAY 20 inches of snow.we were in the state of emergency...its still a mess.
did tx #8 today and saw the dr. too.things are moving along slowly due to the holidays.next week will be week #4 and ill finally be doing a full week of tx.i just hope things go as planned.
hope everyone has a peaceful night.sweet dreams.God bless my sistas
hugggggggggggs
k
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