2013 Sister Warriors
Comments
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My first post here.
I had a lumpectomy on 8/27 and found out yesterday that both sentinel lymph nodes came back positive. Everyone expected that since my cancer was small (15 mm) and caught early that the nodes would be clear. My margins are clear. I meet with the oncologists next Thursday to come up with a treatment plan. Originally I was just looking at radiation but my surgeon said that I'll need chemo now.
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Welcome Kellee to the club no one wants to belong to. I'm glad to hear that they got the clear margins, but chemo sounds daunting. I am not sure whether I will need chemo yet, but I know that I will have the support here of others who have gone that path before us. This is a wonderfully supportive place.
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Kellee - Welcome to an amazing and of sisters, but so sorry you must join us. Congrats on lx&snd done with clear margins! Darn those nodes...sending calm confident thoughts and prayers as you move forward...may you feel comfortable itch plan presented next Thursday...we will be in your pocket {{{squeeze}}}
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Hi Kellee. Sorry to hear about your dx, but glad you have found us. There are some ladies who have been through chemo that are on this thread, and can answer questions and pass along ideas. Also know there's a "Preparing for Chemo" thread (use search function at bottom of the page). Check out the chemo section of BCO to prep for your meeting (be familiar with the terms, protocols, etc.). It is much to take on, for sure, but know you are not alone.
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Hi Kellee,
So sorry you have to have chemo. Many of us here have been through it and have found our way back to a new normal. It sucks but is doable. Lots of drugs are available to manage nausea and other side effects. I used cold caps so did not lose my hair, and also iced fingers and toes to avoid neuropathy and nail loss. There are better things coming along all the time to help us.
Good luck at the doctors and be sure to take someone with you as a second set of ears, and ask a lot of questions. Take notes. They throw a lot of info at you quickly. I went back to my notes, and my friend's notes, quite a few times at first.
Good luck and HUGS0 -
Hi Kellee, I wish we didnt have to meet/talk this way.. darn cancer, I cant help with advice on chemo, but there are lots of good advice on these boards, everyone is here to support and listen to all our fears, triumphs, etc. we are all on your side!! Take care.
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Kellee,
Oh no...so sorry about the positive nodes. You STILL might want to get a 2nd opinion. ..including letting someone else review your pathology for tumors AND nodes...
Also, you can read up on the different Standard of Care Guidelines. ..there are a FEW separate ones to check out...and read the "Professional" version for more detail...
Even if 2nd opinion says you still need chemo they might suggest a different kind or regime...I'd definitely get another opinion so you are fully informed of your choices. ..
Take Care.
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Violet0 -
I saw the RO and and Med Onc today. I'm comfortable with their plan for chemo (AC+T), radiation and then Tamoxifen. I am choosing to have treatment closer to home so now I have to make another appointment with the Med Onc there. The RO was awesome and made the radiation call for me and sent my info over already. I wasn't pleased with the Med Onc and am glad not to see her again.
I'm overwhelmed and terribly sad. I appreciate the support here! Thanks so much
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Hi All,
It's been a few weeks since I have been on the boards and I really have missed you all. Seeing you all here has brought a smile to my face. I am on a new weekly chemo schedule with Taxol and Herceptin now. I tried to return to school and had to sadly put in for leave after the first week back. I just couldn't make it through the day, even with the kids supportive attitude. So far, so good! I am tolerating this much better and hope that I will be able to move toward surgery after 8 more treatments. It had been a tumultuous summer and we are now looking for a cooler fall and kicking cancer with all I have! Sending hugs to all! Susan0 -
Hi Kellee: A belated welcome to you! Sending you lots of hugs and calming thoughts. This is all so overwhelming and sadness can hit us hard. As you wade your way through it all, you will feel less overwhelmed and, for me, I have been able to channel the sadness into action giving me education and a feeling of some sort of control. I have my good days and my not so good days, but the good ones are outweighing the bad ones. This is the place to be. There are many shoulders to cry on, and messages of hope, love, and understanding. I am so glad you found your way here.
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Hi everyone!
My name is Pam and I live in Southern California. I was dx'd with IDC on 8/21/13. I am ER+, PR+ and Her2-. My PET/CT showed no signs of spreading and it looks like only one or two lymph nodes are involved. I'm apparently somewhere between late stage 1 and early stage 2.
I have an extra added complication of Aplastic Anemia. For those who don't know, it means my bone marrow doesn't make Red cells, Platelets or White cells. I get red cell transfusions every two weeks. These don't put me at a normal red cell level - just high enough that I won't have a heart attack or stroke. My platelets are at 33k (normal is 150k-300k) and my white cells are non-existent.
This is proving to be an issue with the surgeon as I'm at serious risk for infection and bleeding out during surgery. They can give me platelet transfusions but there is nothing to do about my whites except eat a really restrictive diet (nothing fresh, all processed, canned or frozen foods) and wearing a mask all the time.
I'm having a Breast MRI this coming Monday as there are a bunch of calcifications in the left breast near my tumor. If these calcifications turn out cancerous, then I need a Left Mastectomy. If they aren't cancerous, then I'm getting a lumpectomy. I'm also getting the sentinel node biopsied or taken out (can't remember).
If I can't keep my platelets up or get my white counts up - then I will be going on Tamoxifen. They will keep checking my platelets and whites and if they come up enough, then surgery. If I can't have surgery then possible radiation and Tamoxifen and we are looking at containing the cancer but not getting rid of it. SUCK!
I also have Type II Diabetes as a result of a treatment I took to reduce my transfusions. I am what my doctor's are calling "A Challenging Case"
Indeed!!!
Looking forward to talking to you all more!
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Hi y'all
Pamfightson - welcome to our warrior sisterhood...ready to check some c! Ugh your right this all €##€#!
Wow, your BC team has a challenge, but you sound like you are more than up for this fight. Lov the avatar:)
I'm in SoCal right now for hubby then again in Nov for my 6 mo post rad mammo! Headed to OC beach today...:)
We will be in your pocket (((squeeze)))
Sending calm confident thoughts and prayers for your blood chemistry to be just right for surgery and progress in your tx!
Susan - good to hear from you and yeah as you move through your chemo plan, but
that you were unable to return to classroom. But this time is all about healing you...your kids are cheering for you! And so are we!!!
Keller - yes, this is an emotional roller coaster...tears of joy, fear, sadness, relief, I did it!
Knw that we are here for you and you are not alone...in your pocket. Breathe and stay focus on today. Look for those small moments of blessings and celebrate them...you have a great BC team...you will be able to do this behave warrior...a day a victory at a time:)
(((Hugs)))
Cindy0 -
I was diagnosed in late 2011. But would be happy to answer any questions that I can for those recently diagnosed. I'm a year or so ahead of y'all.
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Welcome Pam, this cancer is no fun is it? you have alot to deal with before this darn stuff, Sounds like you have a good team going for you, I had calcifications on my left breast and had a mx in April but about 5 years ago had a biopsy for calicifactions and they were begnien.. keep us informed and we are all here for you. Best of luck.
Annie, always nice to have someone who has went down the path before us, thanks.
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Hi to my fellow sisters warriors,
It's been awhile since I posted here, so just thought I'd give an update. A couple weeks ago I finally met with my MO and found out I don't need chemo after all. My oncotype dx scores were both low, and he said even though I have cancer in both breasts, it doesn't make my prognosis any worse. He said they just go by the worse of the 2 sides, and that is my prognosis. So, I am stage 1b on left, and 1a on right. He didn't seem too concerned about the micromets in the node, either. So, on to radiation!
I was so sure I was going to need chemo, even going so far as to research head coverings, side effects, etc. (I guess I was thinking so, partly bec. my BS said he thought I would need chemo, and bec. of the micromets in the left sentinel node, bilateral cancer, etc.,) so when the MO told me I would not need chemo, I felt strangely a bit of a let down. Even though at the same time, I feel so relieved and happy that I don't need to through chemo. I'm sure that sounds crazy, but this whole thing has been an emotional roller coaster!!
Anyway, I am getting ready to start RADs next week. Last week I had my CT and planning session, made the pillow mold, got my tattoos (ouch!). Monday I go for my trial run-through, then on Tuesday I start my 9 to 12 weeks of radiation treatment. (6 weeks on each side, but my RO said if all goes well, he may be able to overlap the start of the 2nd side, so may be 9 weeks?) We'll see how it goes. I really like my RO and the office itself, so hopefully all will go well.
I will be wearing big pockets on Monday, so hope you jump in!0 -
L2girl--thanks for checking back in with us, and we are definitely in your pockets today! I totally understand how your feel about the chemo thing. I even got a "fun wig" in preparation for it, but ended up giving it to my friend that had been diagnosed at the same time I did. We are all on this emotional rollercoaster with you. Best wishes in the rads bar!
Pamfightson-- keep rocking the positive attitude. Keep letting us know how you are doing.
Annietherealtor -- i echo ndgirl's sentiments. Thanks for offering your support and checking in with us!
Sgc728-- ugh, sorry you had to call in sick, and I'm glad you have understanding folks around you. One step at a time and you'll be able to "ring that bell" at the end of chemo soon!
Kellee-- welcome to our group. It's alright to let yourself feel all the emotions and be sad. However, remember to try and enjoy all the things before BC that you did. Do not ever let BC have the luxury of keeping you sad. Keep moving forward and we will be here if you ever need a "ear" to listen or a "shoulder" to lean on.
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I found out yesterday I dont need chemo either. I am so relieved. I was so stressed waiting for the Oncho DX test results to come back. Mine came back at 18 and the ON said that was low. My neice said her ON said an 18 was high enough for chemo- hmmmm... I will just have to trust my doctor.
Anyone else have a score of 18?
This has been such a roller coaster of emotions!
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Ndgirl -- congrats on the no chemo.... On to rads -- you will be finished in no time!!
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I am done with Rads had internal radiation last week. But balloon into my breast on Sept 6- had two treatments a day and a CT scan from Sept 9 to Sept 13- took balloon out on Sept 13 after last treatment. I did get a bit sick from it and the steri strips fell off the wound so went to the ER and got admitted for a couple days for dehydration and pain control- but feeling better daily
Now on to the horemone drug -- Tamoxifen(SP)0 -
Ah -- you are closer to done than I thought! How awesome is that!
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I feel a bit guilty from being done so quickly when others have to wait months.. My neice who was diagnosed in June is done with chemo and will start rads in a month and my sister who was diagnosed just last Friday is just starting this journey and has yet to find out what she will be doing. Just glad she finally followed my advice and had a mammo.
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Nd,
Yay for you!!!! So sorry about your family members though...
Violet0 -
ndgrrl. You are on the low end of what is considered an intermediate Oncotype score--intermediate risk (18–30). You are in that unfortunate gray area, although barely. It's been awhile, but if memory serves me correctly, isn't there a study looking at these ranges? You may want to have a second opinion, and/or have your case reviewed by a tumor board (if your treatment center has one).
My score was 11. My MO explained it to me this way--she showed me a graph that plotted out how I would benefit from chemo (for me, very small margin). This also took into account that I would be on tamoxifen, and that I am stage 2, no nodes involved. In her opinion, she said those with lower scores have benefited from chemo-pause--that your body goes into menopause when you get that therapy. So, rather than put me on chemo, she put me on ovarian supression. That plus tamoxifen stops all the estrogen production in my body, which, with our kind of cancer, feeds upon.
My search skills are really poor this morning, but there have been some threads on this discussion board about low oncotype score and yes vs. no chemo. So if you want to drive yourself crazy, you can hunt those down...
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Nd,
Renee is correct, you are just barely in intermed category
...18 is NOT in the highest range. I, personally (for ME), wouldn't opt for chemo with your stats. However, I'd also never advise another sister what they SHOULD do...cuz we can't possibly know all the details of another's situation + we ain't medical specialists...;)
...BUT, it doesn't hurt to get a 2nd opinion...;) It might give you peace of mind, ya know? Or, did you already get a 2nd opinion?
P.S. -Even w OS & Hormone therapy, one would still have SOME estrogen in their body...;) But, yes, it would tamp down most of it...
Violet0 -
Hi, Kimberly here! Glad to find you ladies! I'm recovering from bilateral mastectomy, little over one week out. Three drains still in and driving me NUTS!
Thought I'd go crazy till I got biopsy results, then thought I'd go crazy till I got surgery date. Then thought after surgery I'd be fine. Now, think I'll go crazy waiting to know if I'll need chemo. I know, I know, STOP reading crap on the internet! I CAN"T help it!!! I NEED to know everything. Guess I'm a type A personality.
Got the go ahead to call and make the appt. with the oncologist on Friday. Of course, his office was closed till Monday. Now I wait all weekend to call. Then who knows how long before I get in? Then when will I know about chemo?
ARGHHHHH!!!!!
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Taque-
Oh I know the waiting is sooo hard. I had to wait 3.5 weeks to see my surgeon after dianosis and I thought I would go crazy. Soon as I had surgery people would ask me if I was going to need chemo and I had no answers so waiting for those results were driving me batty... I had the oncho test ran and the results took a bit over two weeks to get back to me. so its was nerve racking especially since my surgeon said at my age he suspected I would need chemo and the first time the ONC met me he talked chemo and a clinical trial so much I told him I didnt want to know about it until I needed it. So when he came in FINALLY and told me your oncho score is low- no chemo I forgot to ask much- I finally asked him what the score was and it was 18. I sooo wish I had asked him to explain the test results more to me but I just was happy to not have chemo.
Hang in there, its hard very hard to wait and wait and wait. I am like you and want to know everything and the internet is scarey. I am to start Tamixifen and should not have read the side effects.. so now been scared to start..
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ndgrrl,
I knew I wasn't alone but it helps sooooo much to have someone else say they feel the same way. So, thank you for that.
I want to ask when I schedule with the Onc. if they could just order the oncho test right then and not have to wait for my initial visit to ask him to order it. Just want to get all of this over with, you know. I feel like everyone thinks I'm a nut case though, so I probably won't ask until I get there.
My anxiety level finally came back down to normal after the surgery, right up until the point the surgeon said I could go ahead and schedule with the onc. Thank God for anxiety meds! My poor husband and kids. This has been so hard on them too. Watching me act like a mad woman on top of them being scared for my health.
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Hi y'all
Congrats ndgrrl ! Happy Dance rads done just keep looking forward ...journal how you are feeling before tami than you will be better able to determine if you are having any SEs...expect none fingers&toes crossed:)
Taque - GRRR the waiting...the hard part of each step find something fun to help you keep your mind in its happy place...those 2 cuties avatar 
. Hoe those drains come out soon.
L2girl - in your big girl pocket fr Monday:)
Headed to PT for LE trunk...need to lose the 3rd boob ugh:(
(((Hugs)))
Cindy0 -
Hi,
I had to sign a paper so they could order the Oncho test and the place that does the test actually called me to discuss my insurance etc. So I believe you will have to wait to have it ordered. I personally wonder why they don't just order it when we have surgery. I had asked my surgeon about it before surgery but he said the ONC had to order it and I didnt have an appt to see him until after surgery. It would solve so much waiting time if they could just do it the same time!!
I hate hate hate waiting and I know the anxiety levels can go crazy. I am right now waiting on my Braca test results and its only been a week - they said it could take up to a month. I have had 5 family members with BC just this year- Though my cousin and neice were tested and come out negative, but I am crossing my fingers, toes and my cross my heart bra that I will be negative too.
Keep busy, do something fun for yourself. That all seems to help.
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Awwwww Cindy -- so sorry about the LE trunk -- hope PT can fix you up. That as absolutely no fun! You are so good about lifting all of our spirits -- here are some hugs back atcha!
Taque -- the waiting is agony. In all parts of this process I have found that to be the crazy-making part. My BS ordered the genomic test (Mammaprint in my case) long before I got in to see my MO, but the results weren't back yet and I had to wait another two weeks... I was going nuts just sitting and waiting so I called the BS assistant and she looked in my file, and Lo and behold -- the results were there. so I convinced her to just tell me what the report said. Then she said she would make sure a copy got over to the MO's office (ya think?) so that when I meet with him this Monday he will have it. So here I am, 7 weeks out of surgery, knowing that my risk of recurrence is high, so I am getting chemo -- My MO needs to just tell me the plan, what cocktail and the schedule. I am trying not to read too much about chemo until I know which drugs I will be getting -- no need to scare myself until I have the facts.
Nd -- never feel guilty about being DONE!! We all wish we were too, but knowing that another warrior has survived to the other side of treatment is encouraging to us all. Good for you!!0
