CALLING ALL STAGE I SISTERS
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onestep, You're right the Her+ is why he didn't suggest it. Herceptin is the recommended course for you, and is given in conjunction with chemo.
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Welcome GlisteningPearl!
I am another one of the HER2+ and no oncotype. I knew right away, once the HER2+ status was given that I would be doing chemo...
My hard decision was to take the tamoxifen for my 10-20% ER+...I took it for 8 months and am currently taking a break until after my MRI in Dec and then I will decide if I m going to restart taking it again. I will admit that I am really enjoying not having the body aches and joint pains.
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Hi to all the newbies! So many of you and I'm so sad to welcome anyone else being dx with cancer
when will this beastly dx ever end?!!! But welcome to this forum all the ladies here have a world of knowledge. For all of you going through chemo or considering it, I really have nothing to offer as I didn't do chemo for my BC, I did it many years ago for my Hodgkins. I didn't have the onco type test done I wasn't offered it. Chemo also wasn't offered to me as my Med Onc didn't think it was necessary. I did have 39 rounds of radiation. I have a follow up visit with my rad onc coming up on Nov. 9th. I do dread it because I don't like the rad onc. I also don't like having the tests he does done I think they are a waste of money and time. renee
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What sort of tests does he have done, mimi?0
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Aw Renee, I hate my rad onc too and I have my 6 month post surgery followup with him next Wed. UGH!!!! He is an arrogant, condescending a-hole who has a God complex. Grrrr. This should be the last visit. And if it is not, it will be after I am through with this one.
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He repeats a CBC, and the test that tells what your cancer levels are (krap I have chemo brain from that darn Tamoxifen and can't remember the name of the test that C 15 or something) but my Med onc does the same tests all but that one and sends him copies of them. It seems a little pointless to, especially as a nurse to have my blood work checked every 3 months. Heck my regular doc doesn't even feel the need to do it that often and only has me coming in for check ups every year. I could see that maybe it needs to be checked every 6 months but every 3 months? and my lab work wasn't abnormal to start with and didn't indicate anything when I was dx. I should have had my yearly mammo on Oct. 2 by the one I had last year but because I didn't have my final surgery until October 29th and the way my appt. fell to see my breast surgeon for a follow up I had to wait till November and they still haven't called me to schedule it. Guess I'll call them on Monday to set that up. I get so tired of going to the doctors all the time!!! If I go see the breast surgeon in November that will be 3 doctors appt. for follow ups I have in November, that is crazy isn't is??
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Do all your follow-up docs do the same procedures - examine your breasts/scars/mast site/noe areas, etc., do blood work, ask/answer questions and send you on your way? I found that to be the case during my first year post lumpectomy and rads so I stopped seeing the rads onc after 2 follow-ups (wasn't having any issues). My BS went out-of-network and since I have continued to see the med onc I haven't seen my BS in over a year. My med onc sends me for diagnostic mammos 2x/year, has seen me first every 3 months, then every 4 months and just put me on every 6 mos. He does breast exams and blood work so I wonder why I need to see the rad onc or BS unless there is an issue. I also see my primary doc annually or as needed. Anyone can give me a good reason I need to start up again with the BS? Just wondering.
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Mr Rad Onc was the only one following me for two years, but he gave me the creeps. Dirty old man creeps. So When I got set up with a new Med Onc, I dropped him.
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Diane, thank you very much for your welcome and sharing of information. Right now I'm leaning towards having chemo--but will see what the oncologist recommends tomorrow. I'm 52, and have had the same thought as you about how I would feel if I don't have chemo, and then have a recurrence. The second guessing would be a big deal for me, and I don't want to look back and think that I should have done it. So we'll see. Do you mind if I ask where you are receiving your treatment? I'm going to the Seattle Cancer Care Alliance, and so far have really appreciated how well the docs all coordinate with each other.
Thank you also to Raeinnz and BarbaraA and the others who have welcomed me--I already feel your support, and it is really great to know that there are so many generous people out there who really DO know what you're going through and are there to help. I'll let you know what happens tomorrow.
Betty
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Glistening Pearl/Betty- Wishing you a good day tomorrow. I had my diagnosis and surgery at Swedish. I am having my chemo on the eastside with a Seattle Cancer Care Alliance oncologist. I feel I am and have been getting absolutely amazing care. For some reason, the other ladies have hit on something I also noticed - radiation oncologists are weird! Looking for one who isn't but I have quite a bit of time before that.
Look forward to hearing from you tomorrow - my second round of chemo is at 9 a.m. and though I don't want to go, I am happy to be moving forward and FAR less anxious this round. I have been very lucky this first round....
Best,
Diane
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Sisters the group is growing and I cant remember everybody's treatment dates.
I care for all of you.♥
Diane...I loved my radiation oncologist but remember that the technicians will give you the treatment of course under his or her supervision. I didn't do follow ups with mine. I think I saw him maybe 3 times after it was over.
I see my BS once a year who I also like very much.
Ladies good luck tomorrow
♥
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Welcome Betty ~ I will be thinking of you tomorrow. My Oncotype DX score was 14 but my onc told me if it had been much higher, she would have strongly recommended chemo. I had prepared myself to do chemo mentally, I really expected I would have to do it & was surprised my score came back as it did even tho my Rads onc had all but assured me it would be low. I did have 33 tx of Rads & am on Aromasin.
Patoo ~ When I see my Rads onc on the 16th, it will be my two year follow-up & I'm sure it will be the last time I see him. He's a great Dr. but I REALLY hope I never have to see him again! He wants to see my last mamm (which will be the one from Nov 9) to check status of boob & will do a physical check, no bloodwork - my onc's office does that.
~ I only saw my BS for the first year, that was it. No need to see him, didn't have mx, just lumpectomy & another biopsy on opposite side a year later. After I see my onc on Dec 6, I will see her every 6-months after that for 5 years, then once a year. My ob-gyn always schedules my mamm as that is the one year mark & things would be mixed up for the ins otherwise (has to be at least one year + one day), so I let them do that as usual.
Renee ~ My bloodwork has been done every 3-4 months since my surgery. It will be so nice to only have it done every 6 months. I so get tired of that damn needle! Three appts in one month!?! Crap! And I thought my 3 appts. + mamm in 5 1/2 wks was too much!! My gyn's office wanted to schedule my mamm for January (WTH?!?) in tandom with my bone density scan. I told her no, my Rads onc wants to see the mamm on Nov 16 so I definitely wanted that before Jan. I should have told her that I'm a bc survivior, I've already gone one year since my last mamm & I'm not waiting over two months more, but I didn't. (Can you tell I don't really like the gal that sets up the appts, etc?? I had already corrected her on one thing & I don't think she liked that very much, so she wasn't very happy with me.)
Thank you so much, Rae, for the hug. I will take it with me when I go for that dreaded boobie-smasher appt.
Meecie ~ "Dirty old man creeps." ICK !!!!!!
Barbara ~ Keep yourself in check Wed., it'll be over soon! I think my female onc has a condescending God complex!
((hugs Michelle))
Hi Sheila!!
AND, a BIG hello to all the newbies again. I know I've already welcomed you, but I just wanted to repeat it. Edited to add: Sorry this post is sooooo long!
♥ ♥ ♥
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((((Val)))) I can sooo understand your anxiety about the scan and not wanting to put it off.
I have my first MRI in Dec, maybe earlier with everything that is going on. I really would like the surgeon to take my port out when he removes the thyroid but I won't have the port removed until AFTER my MRI...ughhhhh...I hate that everything is so up I'm the air until I can get in to see the surgeon Nov 17th.
edited to add: Thanks for the HUG!
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That's horrible to have to wait that long, Michelle! I hope you get a call saying they have a cancellation and can get you in earlier. Waiting just adds to the stress.
(((Michelle)))
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I was diagnosed in September and had surgery in October. I am so new at this...Even the lingo seems pretty foreign. At any rate - everything has come back indicating radiation and Tamoxifin as the likely treatment. Asked for Oncotype testing - came back today as a 25. Wondering what others would do??? Part of me says - do whatever it takes to be reasonably assured it won't come back...Another part of me says no since everything else seemed to indicate low likelihood of recurrence. Anyone have suggestions for me or questions to ask my oncologist?
Anyone else from the Madison, WI area? I LOVE my medical team. I feel blessed in that regard.
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Hi Erin...It seems we have the same DX.
They didn't do Onco Test routinely when i was first DX.
There is a thread Abbreviations for Newbies Updated. Go to the Active Topics for that. You will understand all lingo things better.
Welcome to our group Sister.
Stay connected
Sheila
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Welcome Erin ~ When my onc's recommended course of action did not include chemo, I was happy to comply. I am sure if I would have felt more secure having it, she would have okayed it. The decision is yours & yours alone, that is what it comes down to. It is not an easy one to make, I realize that. Whatever decision you make, you will feel confident to move forward.
I would ask your onc what his/her reasons are based on as to why or why not he/she was recommending a certain course of action. I know he/she will use your age, your pathology report, & your Oncotype DX score in part.
I am glad you are so pleased with your medical team, that is step 1.
You will become stronger as each day passes.
Please keep us up to date.
{{hugs}}
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Hi,
Thank you, Kira1234, for your words and information.
Welcome Erin. We also have a similar diagnosis. I am recovering from surgery and actually need to call my onc tomorrow to decide what the next step is going to be. I relate to your perspective completely. I also have to echo Valjean when she says it is so great that you already feel a strong connection with your team.
Valjean, your quote is great.
I can't believe the posts since a day ago. All of them were so great to read. I am so secure with all of you, but I think I better also check out a reconstruction group every once in awhile b/c I am being thrown into it now and it is all so new. I don't want to get into recon talk to much as it is not the thread for it, but is there anyone in our group that had the TE recon that I might be able to PM if I had a couple questions?
For the first couple months since being diagnosed I was on a mission and lately I have to admit I just can't believe I am going through this and I have only just begun. Yikes, it is a lot. I know the key is to keep strong and that is what I will do.
Thank you and talk soon.
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Erin and onestep - I am also IDC, stage 1, grade 2 -- actually a tough place to be because it is so middle ground. My oncotype was 23, another middle ground. After four consults, I finally decided to do CMF, the milder chemo - didn't really want to, hadn't planned on it but ended up going the conservative route. None of my consults provided the answer or even more or different information, I was left with the same question after each visit (should I or shouldn't I?) - the answer comes from you. Such a hard decision, I empthatize completely. I also love my team and have to say that the BS and the Med Onc's were all wonderful - but nobody would tell me what to do as they were 50/50 on the chemo....
You will find the answer and don't be surprised if it takes you a bit of time....
Best wishes,
Diane
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Mimi and Patoo
I am getting ready to start my rads, but when I had my follow up with my BS after surgery she gave me the low down on the followups every three months and then 6 months etc. She said she did not care if I did them all with one doctor or if I wanted to rotate because she would do the same as the rad onc and the med onc and as long as they were all getting copies of all my reports she was fine with that but if she missed a report she would be calling me. I have to say I do have a wonderful team of doctors who seem to work very well with each other, if I could just seem to coordinate all my appts on way day life would be great! Never seems to happen.haha
Erin-make sure you feel really comfortable with your med onc and rely on him or her to guide you with the information that you need. I am stage 1 (1.6 cm), grade 1 ER+PR+Her2-. My onco score was 23 with a 14% dist recurrance. My onc was very confidant that chemo would not benefit me all that much. He seems to think the side effects would cause me more harm that the little good it would do me and does not feel the risk is worth it. He feels that radiation and hormone blockers are the way to go. I notice you are HER2 + so that may make a difference. If you have not looked at the onco website do so it has some good info there to read. Good Luck
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I have GOT to get on here more often!! It's taken forever to read all the updates.
Michelle, so sorry to hear of your dx. But, it's probably the most treatable and least aggressive (as someone has already said) cancer you can get. Makes sense of the weight gain!
I can't remember all the good news and the bad that's going on, but I'm glad for the updates. Those who are in good shape with biops and tests, so happy, happy, happy! Rejoicing with you.
Those who are facing bad news, uncertainty, am praying for you all.
Welcome, newbies. We're glad you've found us. There are totally awesome ladies on here that have been through hell and back. We love offering, prayer, support and encouragement to you! No question is too dumb. More than likely, someone has already been through it.
Hopefully, I can get more specific, when I'm not so behind on my reading.
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onestep - you can PM me if you want. I had a bilateral mx w/alloderm and tissue expanders. I have since had the expanders exchanged to silicone implants. I'd be happy to answer any questions you might have.
Donna
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Yeah, don, me too! I love my new foobs!
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Welcome newbies and Prayer to all that need them♥
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Hi All,
For those of you you read my earlier post and knew that I was seeing the oncologist yesterday, I appreciate your good thoughts and encouragement.
The meeting was a bit overwhelming. With my OncotypeDx score of 23, which is in the gray area, there were statistics flying all around the room, and the recurrence score of 14% became 3% supposedly, based on the efficacy of the aromatase inhibitors--I couldn't follow it all. I did tape it so I can listen to it again, but frankly needed some distance from it today--I don't want to play this game any more!
Bottom line, the oncologist didn't think I needed chemo, but, as you all know "it's up to me to decide". He does either a 9 week course of TC or a 6 month course of CMF. The CMF is milder, but the other has the advantage of being over much more quickly
I have decided that I do want to do chemo--I would be too angry with myself if I don't and then have a recurrence--the second guessing would be too much. So now I have to choose which one to do. My DH really does not want me to do the TC, and I probably will go with the CMF. He's the one who will be there to help me, and it's very hard for him when there's nothing he can do to make things better.
Do you think it's crazy to have the chemo when the doc is recommending against it? Boy do I hate this stuff.
Thanks for any input--and for the support.
Betty
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oh Debory---I so need that little girl to say a prayer for my grandson.this morning comin home from work he was in a motorcycle accident.it was bad.his nose was ripped off and he bit his tongue off.i was just roamin around until i saw that little girl.its like a sign that she is prayin for my grandson.thank you for posting it.
please my sistas say a prayer for my GS Eddie Jr.I am such a mess.
thank you and God bless all of us.
hugggggggggs
K
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GlisteningPearl - I know just how you feel, having the identical "scores" all around. My husband originally hoped I did the faster route,but after reading the information on both, he agreed that CMF would be easier on both of us in the long run. Yesterday, I had a treatment and was tired last night. Today, still a bit tired and slightly off in my tummy but I was still able to accomplish things - it's really not so bad. And, I have high hopes of keeping my hair....in case that helps
Take some time off from the decision making and revisit in a day or two. It really helped me get to the big decision....
Hugs and good wishes...
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((Granny)) ((Eddie Jr))
Speedy recovery for your grandson granny
HUGS♥
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