CALLING ALL STAGE I SISTERS
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Welcome Murl and Goodvibes - welcome! You'll find this is the place to vent or cry when needed, or to celebrate happy news and good days. You will be supported by this great group of women, either way.
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I am stage 1 for the second time. Initially diagnosed 4 years ago, had lumpectomy and radiation. Refused Tamoxifen. Second diagnosis, same breast, new primary, January 2010: stage 1, 6mm, no nodes available but Oncotype testing revealed low probability of recurrence or it spreading. April 5th bilateral mastectomy with immediate DIEP reconstruction. Currently taking Tamoxifen with few side effects. Doing really well!
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Anyone having hot flashes with tamoxifen? Man, last night was awful!!! I've been 'warm' at night lately but last night I woke up in a full-blown anxiety attack. Can't really describe it but I felt like I needed to get out of my body. Haven't had a cycle since BMX last August but hormone levels indicate I am not in menopause.
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Hi Karen...Welcome its so good to hear you are doing well. And your SE are minimal.
Im on Femara beside fighting hard to loose weight no visible SE's.
Gail..Im reading a lot of women are suffering from hot flashes from Tamox and Femara.
Sheila
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I know what you mean about the hot flashes. I don't get them as bad as I used to (I am now on Arimidex) but I keep thinking it has got to end soon. I am still doing what my mom calls the bed cha cha cha....you know covers off cha cha cha then covers on cha cha cha.
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I have been on femara for 2 months and haven't had any side effects. Maybe I am just one of the lucky ones.... OR, I will get them later on. I had early menopause at age 42 so maybe that is one of the reasons. But, I do remember having lost of hot flashes at that time! OMG---I sympathized with you having to go through that!!
Went out with some girlfriends tonight for dinner. Was weird because everyone was saying how great I look and how well I am doing, etc... because I had TE surgery last week. I know they were being very nice about it...and they are my dear friends. But, after awhile I get tired of being the 'breast cancer' patient and just want to be myself. HOW am I supposed to look or be? Shriveled up, crying, and wallowing in my misery? UGH... I guess if they didn't ask or comment that would make me mad also. I am not sure myself why I am so upset!
Does anyone feel that same way?
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goodvibesonly-you are preaching to the choir sister! Know exactly what ya mean. You are upset probably becuz you have just been through a horrific thing. Even tho you are "well" enough to go out, doesn't mean you are well. And altho you want things to be normal, they're not, so to "be yourself" is just really not possible right now. And you are so right-if they didn't acknowledge your situation you would be soooooo pissed (uncaring, unfeeling so & so's-ya know) Try to just be thankful that you have girlfriends that want to go out with you. My friends acted like I had a contagious disease for quite awhile-it was done with love-leaving me alone-they thought I needed time to heal, but I felt like a leper! So there are extremes; just try to be a patient patient. Joni
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Sunshine -- I'll try to think of it as dancing
Just finished my 7th month on tamox with no (known) side effects up until now.
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A Storm: Hello Gail, I am into menopause and am on Tamoxifen for now and yes am getting a wave of hot flashes that just come on, particularly at night time when I am in bed. I have these bouts where the covers are on for a time, and then next thing you know I am feeling cold and putting the covers back on lol
Charmaine
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I dont get hot flashes, but I do get menstrual cramps all the time...which I am worried about. Will be asking the onc about it when I see her. I am now fearful that I would trade BC for ovarian or uterine cancer. Lovely!
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Joni-Thanks for the support. You are right..I could have had a different situation with my friends. Sorry to hear that your friends left you alone 'to heal'. I guess it is really hard for people to know what to do or how to act when someone they care about has bc. It is good advice to be patient with them. And others, esp family, etc... It is horrific to deal with bc and scarey for us. And it brings up so many issue for our women friends and family! Will they be next? If someone so close to them can have bc then they can too. I know since I was one of those people.
I have been open to my work and friends. I think that has helped me cope. I work in a high school with over 2300 students and 90 faculty. I emailed the whole school about my dx and treatment. Told them every surgery etc....(since I had to take medical leave). The faculty have been very supportive. I set up a twitter account so I could post updates without having to email family, friends, etc... regularly. I even have about 6 women friends who I invited on my reconstrutive journey. They have seen my 'boy' chest after the BM, and will see the progression of my recon over the next 3 months. Sort of weird....but I felt that it was educational for my friends. Hopefully they would never have to see this with a family member or themselves.... But the process is sort of interesting to me..so offered others to join me along the way.
So, I think that I have tried to take the mystery out of bc and be up front with people. That may be why my friends make so many remarks, etc... They want me to know that they understand what is going on with me, etc... So, patient I will be... Have a great day and a good weekend.
Jean
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goodvibesonly - I can totally relate. Last week I went to a function at our high school for my daughter. I haven't seen anyone for quite awhile. When I came home I told my husband I kept getting the tilted head, look of concern, "How are you doing?." Like I'm going to drop dead any minute.
Sue
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Cake, are you on tamoxifen? I've been on it since Nov 2008. It's a rare occasion now for me to get a period, just had 1 in Jan, then one in Feb after almost 10 months without one. But I do find that sometimes I get the feelings that one is coming on, but then nothing happens. I also get a heavy feeling in my pelvis, which seems to come and go in cycles. I had a transvaginal ultrasound in Sept and everything was fine. I have another one coming up in a couple of weeks, but I'm not worried. I know that tamoxifen can build up the uterine lining, so I attribute a lot ot these sensations to that. I actually feel that the sensations have diminished since I had those 2 recent periods, I'm glad that my uterus shed some of that lining!
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Never hoped to be joing this club, but I'm new here. I have had dense breasts my entire life- lst aspiration at age 15. I guess I've always been waiting for the other shoe to drop and it did on January 7,2010 when I was told I had DCIS. Had my first surgery February 25 and was then told I have Invasive Ductal Carcinoma. Still recovering from my reexcision and Sentinel Node Biospsy on April lst. That procedure was the worst so far in all of this. Had my post op today, and got a great (I think) path report. Headed in for 6 weeks of radiation the beginning of May and then Tamoxifen. Just wanted to thank all of you for being here- I've been reading the forums for the past two months and since I guess I have finally come to the realization that I'm in this now for the long haul, I thought I'd jump in. Hope you'll have me. Nancy
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nancy2721, I found this board about the same time as you did (in my treatment.) It was post surgery, before my radiation. Something you might be interested in, during this time period (and if your insurance covers it) is the Oncotype Dx test. It is for small, early stage cancers with little or no node involvement. Maybe you have had this done already??? It is a test to see how much you would benefit from chemo treatment or whether Tamoxifen will be effective enough by itself.
My test turned out that having chemo would have only benefited me by 2%, so I did not have to have it BUT, I absolutely wanted to rule out the possibility by getting the Onco Dx results, rather than just have a doctor tell me it was "not likely" that I would need chemo.
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rgiuff...yep, I'm taking Tamoxifen. I find that I have cramping, but maybe it is more like what you described...a heavy feeling. I am so nervous that I'll get endometriosis or uterine/ovarian cancer or something from it. But I'll keep taking it till I see the onc in 2 weeks. Other than that, it seems okay.
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Welcome Nancy: I am at about the same place in treatment as you are. I also had a lumpectomy and sentinel node biopsy on Feb. 25. I was diagnosed Invasive Ductual Carcinoma, but have one unclear margin. I am having a re-excision on April 20. I am meeting with the onoclolgist on April 28th to set up my chemo. I am opting for chemo just because I know I will worry about spreading, even though the nodes were clear. (I'm a worrier) After chemo I will go through radiation and then tamoxifin. I'm alittle worried about you saying the reexcision was the worst surgery. I was hoping for an easier one than the lumpectomy. I know what you mean about coming to the realization. I have been doing really well, emotionally, up until I set my surgery date. Since then I am very teary eyed all the time, plus my sleep hasn't been as good, maybe that;s because of the night sweats! I think before I was doing research for "someone else" now it's REAL and SCARY to really be starting my journey to recovery! Did anyone else go through this?
I can relate to everyone out there talking about hot flashes and night sweats. I have not yet gone through menopause, but have been having terrible hot flashes and night sweats since I was diagnosed. Prior to being diagnosed I really didn't have them. Did this happen to anyone else?
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Hi Nancy....you will find great support and everything else in this thread.
Few years back I went through lumpectomy with sentinel node Biopsy. Chemo and radiation. Sorry you are still recovering from the surgery. We are here for you.
Sheila
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Redbarb...I'm almost sure Nancy meant SNB not the re-excision itself.
I see you already had your SNB and you don't need another one.
For the re-excision I wasn't put under General Anesthesia. I walk up alert not sleepy or anything.
We'll be thinking of you on Tuesday. Let us know how you are.
If you have questions about anything, feel free to ask,
Good Luck
Hugs
Sheila
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Thanks Sheila, I'm glad to here the re-excesion isn't bad. They said I could be sedated or put to sleep. I opted for being put to sleep. thanks for the hugs. I will keep everyone posted.
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Redbarb..You have 5 more posts to make it 50.
After 50 you have no more restrictions.
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Welcome Nancy ~ As Sheila has said, you will find lots of support here with caring arms to help you along the way. Don't hesitate to rant, vent, or even cry here. This is your soft place to fall; we are all in this together. (most unfortunately)
{{hugs}}
Valerie
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Valerie...I feel like a stalker tonight. LOL
I just cant sleep.
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Hi ladies
I'm Rae and I live in New Zealand. I was dx ILC on 20 Feb 09. Blood tests, CT scan, MRI, then for lots of reasons a bmx and immediate recon on 27 Feb - 6.5 hour op - was so nauseous for 3 days after I didn't even notice the other pain! Path report post surgery was PILC/LCIS 2 cm, 4 clear nodes, ER+++ 90%, PR+++ 80%, HER 1+ negative. No rads because clear margins. Very nervous visit to specialist onc because of pleomorphic status who said no worries because I was only grade 2 - phew, gave me 85% chance of long life without any more treatment, said chemo 1% benefit - not worth suffering the side effects, put me on Femara for 5 years for a 3% benefit and said he wouldn't need to see me again! - very efficient man! Bone scan, bone density scan, 6 horrendous, sad months trying to get my head sorted, lots of aches and pains and fatigue from Femara and last recon surgery 2 weeks ago. I feel like I have been through a tornedo and been spat out the other side but the goal was life so I grabbed it with both hands and hung on tight. I am grateful to have (hopefully) been one of the lucky ones.
I have been visiting this site regularly since dx and you ladies here are just the best - so welcoming of new members, supportive of eachother and very generous with your info. I finally decided to join so I could feel part of it all and am enjoying 'meeting' different groups of people on different forums.
Rae
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Nancy--Welcome. I am a new member myself. Wish I would have joined when I was first Dx Oct, 09. But am really liking the support the past few days. I would agree with the posting from Elimar regarding the Oncotype Dx test. My onc ordered it after my bm to help recommmend the next course of tx--chemo or hormone tx. My results came back with #14 which is in the low risk category. So, I am just taking femara daily. Interestingly, though, my first onc probably would not have ordered the test. I go to Dana Farber in Boston and my first onc went on maternity leave just prior to my bm. So she referred me to another br onc at Dana Farber. This woman was so great...I liked her alot more that first dr. I am still scared about not doing chemo. The only thing that you need to be aware of for the Oncotype Dx test is that it is expensive and some insurances won't cover all of the cost. My insurance denied it first, but Dana Farber is sending more info to justify them paying. I called my insurance prior to the test and they said they pay for the test if the cancer has 5 chacteristics..... My cancer fit all of the 5 specifications. So, now I just need to make sure it is justified by Dana Farber. I have really learned how to navigate the insurance issues..... Not easy.
I say we all need to celebrate our accomplishments as we go through this physical, emotional, and spiritual journey. We are strong women who have been faced with a very difficult challenge in life. However, we are not letting this get us down! (Well maybe some days are better than others.) We educate ourselves, reach out for support, look for healing measures to get us through tough times, etc...
Pat yourself on the back for getting to where you are today!
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Welcome Rae... how nice of you to come here and join us even though it is under such a terrible situation. The ladies on this board are absolutely wonderful and supportive. I love each and everyone of them. They are always there to lend a shoulder or and ear, whichever you need today. Very glad to hear that you didn't have to have any chemo. I don't know about Femara personally but I hear it can kick your but, which is why I talked with my Onc and we decided to go with Tamoxifen. I hope the side effects of the medication get less for you.
goodvibesonly - hope you get that Oncotype test paid for. My docs didn't even do one on me. But I've been fighting with the insurance companies about other bills so I understand how that goes.
Renee
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I'm stage 1 - bilateral ca..Had the surgery and will be starting radiation. I am advised to start Ameridex to be taken for the next five years. Very nervous about the side effects. Wondering if anyone else is on it and how it is tolerated...
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Welcome, Oma261, and all of the other newbies to this thread. Am sorry that you all must join our group under these circumstances.
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Just wanted to pop in and say hello to all of you. I have nothing exciting to say other than HELLO.
Meece, I want them angel wings yo' wearin'........
OH, almost forgot......expecting 6th grandchild in Oct. This is soooooo all about me.
Hugs and love to all, Sue
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I'd say a new grandbaby on the way is exciting! Congratulations, Sue!
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