2013 Sister Warriors
Comments
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hurray Maakmezorge and good luck with Friday! I have similar stats to you, except my tumor was 1.8cm. I put my doctors through the wringer and got some great advice from a Stage 1 thread (stage 1, grade 1 and pre-menopausal) and there's tons of women that posted there about struggling through the same choices. I too was pretty much almost convinced that I would need chemo because of my age (33), but turns out the final verdict is that I get tamoxifen with 2-3 years of lupron shots to put me into temporary menopause. My MO had almost guaranteed my being on tamoxifen even before I had surgery. Paula's right -- you might want to get a second opinion just in case if they don't offer you a type of hormonal therapy.
Soteria205 -- I LOVE that description for ESD!
So after 5 weeks of leave and 3 weeks of full time teleworking, I'm finally back in the office. I don't know the number of times folks have felt compelled to share Angelina Jolie's story with me, nor can I remember the number of times I'm explaining what the BRCA gene is. I'm just starting to adjust to the idea of being an unofficial spokesperson/example with the number of coworkers/friends that went to get their mammograms and check-ups because of me. I've got 1 week of tamoxifen down and 519 more weeks to go (also wondering if this sudden crankiness today is attributable to tamoxifen or just the fact that I'm back in the office).
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Thank you Cindy!
And Paula, yes, that is what I was thinking, I thought it was a bit odd. I asked about it and she mentioned that both were highly positive (ER/PR) so I thought it would be standard to get some hormonal treatment. Not sure if there is a difference between Holland and the US (as far as standards, limits and all that) but I will see what they say and if they still say no, I think I will get a second opinion.
Cuetang, thank you for pointing out the Stage 1 thread (and this one!). I will have a read there and see what others have said or think. The age for needing chemo as a young woman, regardless of grade, cm's and all that, is 35. When I was diagnosed I had just turned 37, so yes, I am older than the 35 but not by much. We will see what the docs say on Friday. If I can dodge chemo I will be more than happy! BUt hey, if they advise me to have it anyways, I will.
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A score of zero, how awesome Nyama!
Wonderful timing going back to work Cuetang. Teachable moment for sure.0 -
Maakmezorgen -- on another note, I see you mentioned Holland. Have you had a Mammaprint/Oncotype test done? I think the go-to test may be the Mammaprint in Europe, which looks at the genetics of your tumor. I had the Oncotype test which the results played into the final decision of my MO to not recommend chemo.
Renee- how are you doing with the hormonal therapy? Have you started tamoxifen yet? You're right....what timing I have being back to the office....thanks Angelina Jolie!
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Thanks Cuetang, I mentioned this at the beginning and they said that whether or not they would to the Mammaprint would depend on the results of the tumor. I will ask about this again!
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Renee--Can I ask how the expander is doing. Is it uncomfortable or painful? Of course I'm expecting discomfort and pain but just wanted to see what others are experiencing. I'm scheduled for bilateral mastectomies on 5/28 and scheduled for expanders to be inserted at the same time. I have the IDC cancer in a couple of places in the left breast but decided to remove both breasts.
The issues/decisions that I'm having a hard time with is if I'm making the right decision to also have the expanders and implants. I just read the 50 or so pages from the plastic surgeon of what can go wrong altho I do know that they cover everything and anything for liability reasons. But I just keep wondering if I'm setting myself up for additional problems, pain and others issues.
Others opinions would be appreicated.
Marlene
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Marlene, the tissue expander experience has been almost completely painless for me. No pain, discomfort until I had my last fill; but even then--the next day, it was over. I just had another fill today (my last one!) and just a twinge of tightness. We'll see how things go tonight, but even if it's painful, I don't anticipate it lasting. The TE is like a big grapefruit attached to my chest, and rock hard. It really doesn't bother me.
Cuetang, I started tamoxifen on 5/3. Not seeing any additional SE--was already having hot flashes w/the ovarian supression. Not getting good sleep, which is becoming a drag. The hot flashes keep waking me up every couple of hours or so. Noticed my skin was a little--different (?). Kinda flaky but not really dry; had a weird outbreak of acne (in places, pattern I normally don't get). I am trying to drink lots of water/non caffeinated liquids daily.
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Renee Thanks for sharing! Your comment lowered my fear and i needed that. I started reading some "horror" stories on this website about problems with long term pain, etc that some folks seem to experience and was wondering if this was the norm. I kept telling myself that folks with good results or "no problems" are not as motivated to post as someone that is having a problem. But hearing from someone that just went thru the process was needed.
Thanks again.
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I was diagnosed with triple negatiive breast cancer! Stage II b in December 2012, started dense dose chemo on Jan. 3. That's over, thank goodness. I am getting ready for lumpectomy followed by radiation. I had 2/3 positive nodes on SNB. One surgeon is pushing for lymph node dissection and another says I can get away without it. I *really* don't want the node dissection due to lymphadema. Tough decision to be made, and it has to be made soon. Surgery likely 5/30/13. 2013 has been pretty terrible except for the good friends and caring family I have.
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Marlene, it's important that your PS goes slow on fills--that's when women get pain. I had 60ccs a fill, and toward the end, got less than that amount. Yes, there are some scary stories out there, but also as true that it's much less likely that women who do fine have threads discussing that. BTW, still doing fine--never experienced pain from yesterday's fill.
Sorry about your diagnosis Linda, but am glad you found us. I wish I had some thoughts or experience about your node biopsy dilemma. Perhaps others do (?).
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Linda, check out this discussion on BCO: http://www.breastcancer.org/treatment/surgery/lymph_node_removal/number_removed
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That article has multiple parts, look on the left for the links- here's another important part: http://www.breastcancer.org/treatment/surgery/lymph_node_removal/importance
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Renee--hope your body adjust soon so that you can get some sleep! I'm feeling a little bit of achiness in some joints since starting tamoxifen, but that's about it so far (fingers crossed). I'm sure when I start the Lupron, that's when the SE party will start.
Linda2012 -- 2013 totally sucks, I agree! Good luck with your decision...
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Thank you. I have seen those articles.
I have noticed that many of the people who have had recurrences had ALND at the time of their breast surgery. That makes me wonder how helpful it is to have ALND ..... Of course there could be a lot recurrences without it, I suppose.
I guess I just have to make a decision. It's tough, though.0 -
Hi everyone,
Found this group and I'm a fit! I'm 49, diagnosed end of Feb, Surgery Mar 8, Stage 2, Grade 3. Recommendation is 4 months of chemo followed by radiation and hormone therapy - wow. That's alot!
Reading thru this thread I feel I'm with others walking a similar path at the same time, lots of waiting and then a mad dash to get all the tests done and prep prior to starting treatment. Lots of poking and prodding. Did not enjoy the mug test yesterday, or the core needle node biopsy the day before. I am however excited to say I'm starting my 1st round of chemo on Thursday - just 6 sleeps away!
Learning so much from all of you and these boards already and know that its just the beginning.
Fight on everyone - we can win this.
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Oceanwarrior -- sorry you had to join us but glad you found us! You sure are a fit!
looks like we were surgery sisters with our surgeries being on the same date. There are a number of ladies on this thread that have offered helpful advice with their experiences in chemo, rads, and hormonal therapy. Best wishes on the upcoming chemo!0 -
Welcome OceanWarrior! Love your attitude. You will definitely kick chemo's butt!
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I finished chemo yesterday! I started on Dec. 7. It was a long 5 & 1/2 months. I get scans on the 31st then probably on to rads.
Blessings
Paula0 -
Congratulations Paula! I'm doing a Happy Dance for you!!
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Hi y'all
Soteria205 - Congrats and Happy Dance! Yippee:)) big big smile you did it! No more chemo!
Sending speeding nurturing healing thoughts. We'll be in your pocket for scans. Until then rest and renew and be good to yourself. You will rock rads mighty warrior
Oceanwarrior - Welcome! Glad you found us...amazing fierce warriors standing strong. Congrats on lx healing...enjoy this week...we'll be in your pocket during walk thru chemo land(((squeeze)))
Linda2012 - Trust your heart/gut! Everyone's cancer is different...don't second guess and drive yourself crazy looking at everyone's profile. Once you determine your plan of attack you will find peace. Focus on today! Have a great today:))
Renee&Cuetang - Crazy 6 mos in rah warriors! Being on the pill ... Ha ha:) not what we ever imagined. Sending good days solid sleep nights with no SEs:)))
Excited to get a 6mo break! June1 will start my pill. Until then I'm home celebrating:))... Dinner dance next week:))) hoping I can stay 5'5"" & 125 on the pill...Getting ready to roll into another decade soon! Journey to 60 was not what I expected last year at Tahoe...but bring it on!
(((Hugs)))
Cindy0 -
Got good news on Friday! I don't need chemo! So happy about it!
Weird thing is that I am very happy but it does bug me a little bit as I am scared that I am not doing everything I have to do... Especially since they also confirmed I don't need hormone treatment. Guess this bugs me even more. Have an appointment with radiation this week to find out when it will start and how many sessions it will be. After that I am off on a long trip during the summer. When I get back I will probably go for a second opinion
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I've never heard of anyone being hormone receptive that didn't get ESDs (estrogen sucking drugs) arimidex, tamoxifen, etc.
Was it a very low estrogen?
Paula0 -
I'm so sorry. I forgot to tell you, "I'm happy for you that you get to dodge the chemo bullet." I would, however, get a second opinion on the hormone thing.
Paula0 -
Yea Paula! So happy for you!
Maakemezorgen, glad you don't have to do chemo. Rads is doing something "more" for sure! I do second what Paula said about the hormone therapy, but not all cases are the same.
Yea for you too Cindy, and enjoy celebrating. I know you'll enter your 60s fit and fabulous. I just don't see you having anything but that.
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Hi Paula - The nurse just said it was highly ER and PR positive when I asked her about it she said that the chance of it coming back was so low that the ESD's are not needed. Everywhere I look on the internet I see that everyone with ER/PR positive tumors are on EDS's...
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Oh and congrats on finishing chemo Paula!
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Maakmezorgen, wouldn't an oncologist be the one to make the call on ESD?
I got my (tissue expander/implant) exchange date--August 8. Alright, it's not right around the corner, but is nice to have an end time for this fake boob situation (which, I guess I am switching to another fake boob situation, but it'll be my permanent fake boob situation). I went to my breast cancer center's boutique last Friday and got fitted for a bra to contain the TE and be balanced out w/a fake boob. So, I have a nice bra and I don't look weird when I wear it--feel so much better about my chest situation.
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Yes Renee, the multidisciplinary team (pathology, surgeon, etc.) has a weekly meeting in which they discuss all the breast cancer cases. The nurse phoned me the next day to tell what the team thought would be the right treatment for me. I had an appointment scheduled with the surgeon later this week but this one was cancelled as there is no need for it anymore... I guess I will see about either getting an appointment anyways to discuss my concerns or getting a second opinion...
Glad you got your exchange date!!
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Different centers have different approaches, I am learning. Have you also posted to the site Cuetang recommended Maakmezorgen? (Sorry, after a while, these thread start to meld together!) Those ladies are well-aquainted with studies out there and may be able to shed some light on your drs.' decision (or, encourage you to seek another opinion).
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Maakmezorge--
I'm really new at all of this but have been spending hours researching. So when i saw your post, I wondered of a Oncotype test would help you and those involved make a informed decision. I tried to copy the address for genomic assays explanations (which suspposedly helps those with bc to know if they would benefit from chemo), etc..,but this web site would not allow me to. maybe you can do a search find the information.
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