2011 Sisters
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What a difference 24 hours makes. Its raining hair. Literally falling out in clumps. Time to get out the clippers... So depressing.
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I don't understand why almost everyone is having chemo, your diagnosis looks like mine. My doctor said I need 3 wks. of spot radiation. How do you know what to do, just listen to your doctor telling you what you need?
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Vickiif,
I was convinced that I didnt need chemo, until the doctors ordered Oncotype DX testing, the results came back with a score of 31 (on a scale of 100), equating to a 25% chance of recurrence in the next 10 years. I opted for chemo as studies show that it will decrease the chance of recurrence to roughly 6% in the next 10 years. So far, chemo hasn't been as difficult as I had imagined... I realized that I still have 3 more treatments and the symptoms will likely compound in severity... still and up hill battle, but a battle that I am going to win!
Additionally, I forgot to mention that I came back ER- PR+ and HER2-. With you diagnosis date of late June, have you recevie any biopsy results yet?
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Merlinda sorry about the hair it just plain sucks
Vickilf I had chemo cause I am triple negative
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Merlinda I did receive my biopsy reports, tumor type was invasive moderately differentiated ductal carcinoma, Nottingham grade 2 0r 3, score 7 of 9, derived as follows: tubule formation-3, nuclear grade-2, Mitotic activity-2 so 7 of 9.
tumor size--persistent carcinoma measures 6.5 mm. In greatest dimension status. tumor is within 3 mm, of the anterior margin. It is more than 10mm from the remaing margins (all margins free of tumor.)
Pathologic stage in current sample--T1b no MX (status post biopsy, so this likely is an under estimate of "t" staging).
no mailignancy in margins or lymphs.
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Vickilf I didn't have chemo either because my oncotype score came back an 8 which ment that the chemo would hurt me more than help me... MO said he wouldn't even do chemo if I asked for it... Rads was a course of 28 treatments even though he talked about just doing 16... the treatment team discussed that my not having chemo and had one SN that had a small amount of cancer cells that were encapusulated he would feel better if I had the full course with rads to the lymph nodes. So I did... next step for me starts back at the MO's office discussing Anti hormone drugs.
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Day 15, the day I shaved my head. Oh, the mixed feelings I have. In a way, glad I did it...why put off the inevitable? Three more treatments, my husband wants to take me on a 9 day cruise during my break between CT and RT. Could be a really special time for us, if my health/strength holds up. Anyway, this week I go thru CT#2, not looking forward to the next round of side effects. This discussion blog is more a form of therapy for me than anything... I hope you guys don't mind my "diary type" entries....
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Hello Sisters!
I've been reading these posts for the last few weeks so I thought I should introduce myself. These forums are a great way to connect with others.
I was diagnosed with BC on June 28, 2011. I had lumpectomy, sentinel node biopsy and axillary lymph node dissection on July 6. The surgery went well and I was back to "almost normal" within a few days afterwards. I say "almost normal" as I don't think my life will be normal again for a long time.
Yesterday, I had my first appointment with the cancer clinic. As I'd been expecting the absolute worst, the news wasn't too bad. Stage IIa IDC. Tumor was smaller than thought based on the original mammogram and ultrasound (1.6 cm vs 3 cm). 2/8 nodes positive - the nodes studied during the SLNB were positive, but the others removed in the axillary lymph node dissection were all clear. Grade 3. Receptor status is unknown at this point.
I'm going back on Friday to see the MO. I expect I'll be having chemo followed by radiation.
I'm 47, married with two daughters - age 11 and 8. When I think about my diagnosis, I worry the most about what this means for my girls and their future health.
Michelle
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Good morning! I just wanted to say "hi" to all the ladies new to this thread - WELCOME!!!
Due to dense breast tissue I was determined to have an MRI last year (tired of the "no lesions seen, but due to dense breast tissue masses cannot be ruled out" mammogram reports). No pain, no lumps, no family history so I had a fight on my hands, but I finally got the MRI approved. I feel so fortunate that my cancers were found early because I listened to that little nagging voice! I had bilateral nipple-sparing mastectomies in February and I'm currently in the tissue expansion phase of reconstruction. Scheduled for my implant exchange on August 24. Started anastrazole in April with only some manageable minor side effects so far.
Hang in there everybody!!!!!!!!!!!!!!!
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Welcome Michello13 glad you introduced yourself. I understand what you mean about worrying about your daughters. My daughter is 9 and all I could think was oh no what does this mean for her. I guess what it really means is that they will just get monitored sooner than we did and if and that is a big if something is found it will be sooner. I just hope what my children take from all this is strenght.Do you work outside the home? How are you girls doing with this?
Hope everyone is having a good day
Hugs Kymn
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Thanks Kymn. You're right. The benefit for my girls is that they will be more closely monitored for BC than I was. Luckily, I listened to that little voice inside my head and found the lump in my breast. Otherwise, my situation could be a lot gloomier!
Yes, I work as a marketing consultant for a financial institution. I'm off on medical leave at the moment. As I'm recovered from surgery and haven't started treatments yet, I really feel like I should be going to work every day! I should stop feeling guilty about that and enjoy the summer off!
Michelle
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Yes you are right Michelle you have no reason to feel guilty, if you are able to get medical leave definelty take the time to heal yourself. I financially had to work through all the BS, but I was able to take a week off after each round of chemo. I havenet started rads yet I start on tuesday but i will prolly work a 4 day week so I have an extra day to relax and get some rest. Make sure you let us know what the ONC says on friday.
Hugs Kymn
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Gong to the MO tomorrow...............Still haven't begun the Femara, so I'm sure she is going to tell me a thousand reasons why I should have......................taking my Estrogen level test with me,and letting her take a look......I'm sure it isn't going to change anything , but I 'm not ready for her "crap".
One day its the raspy throat, then its the refulx, then its the achy back, still swollen, and of course there is the LE................I have to think before I walk when I get out of bed to pee in the middle of the night, so tell me..................................so I need the rest of the bullshit with Femara to add to the already "shitty aches and pains I already have".........................Oh well.................it is what it is.....................
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Hi everyone. I am Janis, another newbie here. I think it is wonderful there is a place for us to go and share all of our thoughts and feelings. This is a scary journey.
I was diagnosed July 1st. My initial diagnosis, based on the core needle biopsy, was Mucinous Carcinoma. I had a partial mastectomy and got the pathology report from the surgeon last week. Now my official diagnosis is Invasive Ductal Carcinoma. The Sentinal Node biopsy was negative, big plus. I saw my oncologist for the first time today. He said he wants to have further testing done on the lump...genetic testing...before he makes outlines a course of treatment. I have no idea what this means exactly. He said that 80% of these tumors are the slow growing kind and not aggressive. Only a few, 20%, must be treated with chemo. So waiting another two weeks for the result there.
He also indicated he would not be giving me Tamoxifen but a similar medication with less side effects. It can affect the bones, so I have to g have a bone density test. He also drew blood to check my Vitamin D level. He said I will likely have to take both calcium and Vitamin D supplements while taking the medication.
So now I just wait. I am hoping I fall into that 80% and don't have to have chemo. I have read here for awhile and know that many here have. v What brave ladies you all are! Hang in there.....hugs to all of you!
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justmejanis: Hi and welcome to the class of 2011! Sorry you had to join our club
but sounds like you're well on your way to having a treatment plan. Once all the information has been gathered there won't be so much waiting and it will get easier!
If you're ER+/PR+ and have negative nodes the Oncotype DX genomic testing will help to determine how much added benefit chemo will have when added to hormone therapy. The Oncotype DX test does take about two weeks to process.
Tamoxifen is an estrogen blocker which allows your body to continue producing estrogen, but prevents you from utilizing it. The other hormone medication to which you refer is most likely Arimidex, which actually shuts down your body's estrogen production altogether. It's main side effect is bone loss, hence the baseline Vit D and bone density checks. Tamoxifen can be used by anyone; Arimidex is only prescribed for post-menopausal women. There are other hormone drugs as well (Femara, etc), but these seem to be the two that are tried first.
Sounds like you're on the right path and that you have a positive attitude so far. If you continue to post, I would suggest that you take the time to go to your account and fill out the profile info (when you have it). You'll get more specific answers to your questions if people can see your "stats".
Best wishes!!!
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Thanks for all the information Tina. I am still learning about all this and reading everything I can find. There is a lot to learn. I did find out about the Oncotype Dx testing as well as the Arimidex. Since I had a total hysterectomy in 1996 I assumed from reading this is the drug of choice for me. He already told me he is not planning on prescribing Tamoxifen.
I am not sure I know all the codes and abbreviations used here! I will go fill out the profile information however. Hoping I get it all right!
Thanks again Tina. This really is a journey.......
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I filled out all the information and saw how easy it is! Hopefully now that I have edited it and marked it public it will be out there.
I go to meet my radiation oncologist this afternoon. Radiation is postponed until they get the results of the test. So today I meet him for the first time and he will explain what to expect with radiation. I do know it will be five days a week for six and a half weeks.
Best to all!
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A new day. Today is CT #2. My life seems to evolve around the 21 days between treatments. I am siting in the chair as I type this. Doc says all of my labs came back normal and I only lost 1 pound (probably from shaving my head). I really hope this round treats me as nicely as the first one did. Overall, the SEs, while horrible by any measure, are quite tolerable.
The next 21 days can't pass fast enough... I want to move on already. My sister is coming from Australia to help "take are of me"... But I am not convinced that I need to be taken care of. Oh well, it will be really nice to see her again.
My husband retires from the Air Force after 30 years of service next week and I am so looking forward to the celebratory cruise that he has planned.
I want to welcome all of our recently joined sisters. Please take time to read thru the posts here as one can find a lot of helpful information in the journey upon which they are about to embark.
All for now, updates will come as SEs permit. -
Hey Merlinda,
I can so relate to your comment "I am not convinced I need to be taken care of"!
Since my diagnosis and surgery, I have so many people offering to help and I really don't know what to tell them. My Mum keeps coming to help me with laundry...honestly I can still push the buttons on the washer and dryer!
It's sweet that they care and want to help, and maybe once I start chemo I'll need that help. Right now, it's just a reminder that things aren't "normal".
Seeing the MO for the first time tomorrow. After that, I should know more about what's in store for me!
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justmejanis: Here's a link to a thread for newbies that explains many of the abbreviations:
http://community.breastcancer.org/forum/62/topic/735716?page=78#post_2533180
Hope it helps!
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Thanks Tina, the link was perfect. It will take awhile to get them all memorized but sure is nice to have a guide. It helps when I can comprehend what I read!
Michelle, Merlinda.....how sweet you have people wanting to help so soon! We moved to Idaho a year ago from Wyoming. My husband has emphysema/COPD and we had to leave Wyoming. The high elevation was just too hard for him. We sold our home and moved here because housing is so affordable. Sadly the economy is awful and neither one of us have been able to find work. Anyway, we have no family at all here so Chuck is my only helper. So far he has been very good and supportive. I had surgery on July 11 and he took good care of me.
Merlinda, I hope the chemo is not too tough. I know that it is no picnic but wishing you all the best at this tough time. Hang in there!
I am still waiting for my test results so should know in the next two weeks if I need chemo. If not, then I assume they will start radiation fairly soon.
I hope to get to know you all better in the coming months! Take care everyone.
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Another newbie here. I'm 39, and I was diagnosed in mid-June with DCIS and multifocal IDC in right breast. MRI then revealed a small area of LCIS in left breast. Underwent bilateral mastectomy w/ tissue expanders on July 12 - found 6/14 positive nodes. Had a clear PET/CT scan last week, thank goodness. Now on to chemo, radiation, and hormone therapy. Anybody else starting chemo in August?
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Istreett, I'm starting chemo on August 8. There is an Aug 2011 chemo thread if you'd like to join in.
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CT #2, day 4. More of the same. So far, unlike others, my symptoms have been very consistent with the first round. My joint is a bit stronger than the first round. I had a flew hot flashes last nights, but not as strong as the first round. Only two more sessions!
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robo47: Welcome (but sorry you have to be here)! Even though no two of us seem to have exactly the same story, we're all basically in the same boat.
I thought I was getting off easy because no chemo or rads for me, but had problems with healing after the nipple-sparing BMX in February and am finally back on track. I'm In my final "stretch" with the TEs and awaiting exchange surgery later this month. I started Arimidex in April and trying to deal with some side effects, but nothing horrible so far.
You're right - it is a surreal roller coaster ride for sure! Best of luck!!!
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Hi everyone. I'm a newbie also. I'm 40 years old and am scheduled for a UMX on my left with TE. Unfortunately nipple sparing is not an option for me. I am scheduled to go in on the 11th. This has certainly been an educational experience to say the least. The majority of what I have learned is from these discussions. I have had most of my questions answered either through my BS or here. The only concerns I have now are the "what if's" on an emotional level which really cant be answered anyway. Then there is that nagging question of how am I going to handle seeing my new me for the first time. Aaarrrgggghh. Thank you all for being so honest an openabout everything. This has truly been a mental lifesaver
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CT #2, day 5. Body aches and pains still going on. Severe hot flashes started last night. Appears to be the same SEs from CT#1. Even though I shaved my head last week, the majority of my hair follicles are still growing.
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Two words... Medicinal marijuana. I love my adult daughter so much.
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Merlinda I so hope that you feel better really soon. I know this is rough. I am still waiting to find out if I need chemo. I should know next week at the latest.
I have to say how much I admire all of you courageous women! Reading your posts truly cheers me. I have not had a breakdown, trying hard to stay positive and keep everything in perspective. Reading all of your stories has helped me stay strong. The one thing that shines among the posters here is there is I see no self pity at all. You bravely forge ahead with treatment and look at life on the other side. It truly is a journey and this is a fantastic group.
Stay positive! Cyber hugs to all.
Janis
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