Stage 2 Sisters Club
Comments
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Of course it makes sense to be down, it is one of the scariest things that can happen to a person! I could not sleep AT ALL. I got some prescription sleeping pills, which I would definitely recommend if you are having trouble turning off the mind at night.
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MarieTherese, I felt the same way: lots of good news in pathology report, but very worried and discouraged about being upgraded to Stage II. Another IIA here. As Ruth and the others have said, having a treatment plan really helps. It is the waiting, the unknown and the feeling of having no control that got to me.
My bit of advice is to stay as active as possible, especially once the Lx heals. and feel free to ask questions on these boards, you will find lots of wonderful support. HUGS!
Octogirl
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Octogirl- thanks
It looks we have a very similar DX.
MT
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Yes, MT, I noticed that. Feel free to message me or post here if you have any questions...
are you getting an oncotype or other genomics testing? For me, that was key in the treatment plan, but it was difficult to wait for the test results. Results came back high risk for reoccurrence (which I will admit caught me off guard; so much else had been positive, with very clean margins, no node involvement, etc., that I had convinced myself I'd be low risk). So, as a result, doing chemo, followed by rads and AIs. So far, the chemo has been much more doable than I thought it would be, and I credit the advice I got on these boards to exercise to reduce SEs for a lot of that. It is a haul, but we can do it!
Octogirl
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I think the anesthesia lingers in the system, too, and contributes to depression post surgery. Try to find something interesting and pleasant to do to help counteract that if you can. Good luck to both of you.0
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Hopeful
I completely agree- I had a different surgery 15 years ago and was very depressed afterwards. I think the meds can make an already fragile and stressed emotional state even more so. I know there has been research on post op depression which is more common than one would think. Medical people spend a lot of time with the physical aspects of recovery, but often leave out the emotional part which, for me, have been a lot worse.
MT
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hey 6doggies
I am awaiting my oncotype score and from there will determine treatment - should be within 2 weeks.
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Marie
Here is a trick that might help you. Like you, I was getting pretty good news. No nodes, lump was discrete... everyone was very optimistic. But somehow I was really struggling to get through the day.
So, I wrote down all the good things they were saying--little phrases like' we think you will do very well", "this is just a bump in the road" and put them in my pocket each day-- so, sometimes i would be in a meeting at work, or on the soccer sidelines, or in the car and get really anxious-- I would just pull out the note and re-read it. It really helped me.
Also, because I digitally recorded all of my dr. visits, I could listen to them saying all of this as well....
I still have that little piece of paper in a small frame on a shelf in my closet. It was truly my greatest coping skill as we were working our way towards a treatment plan.
keep us posted.
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momand2kids
I like that! I am going to work on that tomorrow
Best
MT
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MarieTherese:
I am in a very similar place. Had a BMX on September 9 after being diagnosed with breast cancer on July 31. The waiting has been the worst! I'm eager to get on to the next steps and have my first post-surgery oncology visit tomorrow. After the surgery I was told it is stage 2A, no lymph node involvement, 3 cm tumor, ER/PR+, Her2-. The big chemo debate has me anxious! I figure that I still need to wait for oncotype test results...but man, I just want to know! Patience, patience. I am not good at this! Everything has been positive, but part of me is waiting for the next shoe to drop. Part of it is my personality, part of it is that I watched my mom struggle with breast cancer for 7 years while I was a teenager/very young adult. I want to be positive, but there is a little voice in the back of my head that keeps me worried...
Anyway, hang in there. Know that you are not alone. I appreciate knowing that there are others who understand the struggle!
Perhaps I need to figure out how to get a fancy signature now.
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My notices stopped coming so I thought there was no activity in this thread.
Welcome all newbies, I agree with the idea that things get easier once you enter a treatment path. I hope you reach that place soon. I also agree that for some it can take a long time to move forward. I can't say I made huge changes in my life since BC: ate healthy, had healthy weight and exercised frequently before BC. I even thought I had found the elusive work-life balance. Yet my huge bilateral multifocal 4-tumor BC was found (hidden deeply next to the chest wall) on a yearly mammogram which I did on my way to the gym. A Saturday surprise! So I would like to add that part of the work of getting through BC for me also included accepting that some things are going to be out of my control. Not an easy task for someone like me, but working on it every day (via meditation) as something deep in my gut tells me I will have a recurrence. Deep breath now.
Thanks everyone for prayers for my brother. No news there. Momand - congrats on getting the college-kiddo and car done. Hopeful - I couldn't agree more with your words. And to you Ruth: Amen!
Hugs to all, Nisa0 -
Hugs to you, too, Nisa. I understand that gut feeling about recurrence and I hope that your gut feeling is wrong in this case.
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Thank you Hopeful. I wish the same to you. I am just back from (last Thursday) surgery follow-up. Today I was introduced to my new nips, lol. Seriously, surgeon turned what was left of mine into 2 new ones. Three prior surgeries had done some serious damage to the area. Not only that, about 3 ounces of fat was removed from my sides and injected into my top chest. Wish more had been taken off but was told insurance have surgeons "weigh on a scale" fat removed before transfer. That is a lot of policing for what I would consider a deserved tummy tack gift. Wow to the science of fat transfer! And not-nice to my insurance company. Anyway, the whole pre-anesthetia drugs plus 4 nerve blocks was awful but here I will stick with the good news - don't want to scare any readers getting ready for nip surgery. So I am doing better every day, and feel positive about the outcome. I was told wait a month for fat to get into final destination, some will be lost, and perky nips will shrink. That is just fine. I know one thing, this was my last reconstruction regardless of outcome. Happy dance!
Anyone here that went through that process?
Hugs to all, and extra ones to newbies going through the early stages of treatment.
Nisa 💕0 -
Glad you are DONE, DONE with surgeries, Nisa!
I hate insurance companies. Blue Cross of North Dakota does not consider hair a part of the body, so does not pay for wigs. I was so mad about that one that I appealed it (to no avail) all the way up to the State Insurance Commissioner. I am STILL mad about that one!!!
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Hi all - yesterday marked my five years from diagnosis - I had thought about it earlier in the week - but totally forgot yesterday and realized it today! I think that is actually a good thing, and I am super grateful to be here and hanging in!
nisa - thinking of you, I know this is a tough time for you.
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Congratulations, SpecialK!!!
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congratulations Specialk!!!!
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Nisa - Best wishes for a great long-term outcome of your FINAL surgery. I hope it's totally worth all the stress, pain and hassle.
Special K - congrats on your anniversary - and on sailing right past it. Now THAT'S recovery, in my book.
Ruth and Nisa - I totally hear you on insurers. I'm fighting with mine for approval to participate in a clinical trial for which I am a perfect match, but it's out of network so they have put me through the wringer these past almost-4 months. I cannot believe that they have the $ to pay for sports arenas, huge new buildings, etc., but deny their "members" everything possible. If stress does contribute to disease, they certainly have a LOT to answer for!
PS - I hope everyone got a good view of the lunar eclipse plus 'super moon' last night. It was really lovely and memorable, I thought. The moon will still be HUGE tonight, too.
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SpecialK - Wow SO nice to read about your anniversary! I am doing a happy dance here for you 🎶💐🎉👍🏼🎼🎶 !! It is a fun thing that your diagnosis day has become irrelevant enough to miss it yesterday. But it still deserves a huge celebration so please share an update after your hubby and kids take you to a special place. We are all going to be there with you! To another 5 and multiples of 5! 🍸🎀🎈💥💥0
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Couldn't have said it better, Nisa. Special K, you've got a whole chorus line of us doing a very happy dance for you!!
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Hopeful - I'd love to hear about the trial. I am a bit surprised you need insurance to pay for it. I worked in research for many years. The sponsors of trials often pay the bills, and some even pay participants. Maybe you could get a waiver from the trial? Perfect candidates are not easy to find. Good luck with that. Anything involving insurance is a test of patience and grit. Lunar eclipse was awesome. It was a divine gift for SpecialK 💕
Ruth - Same thing here about wigs in my otherwise decent health plan. I bet it is guys making those decisions! Probably bald guys LOL. Good you let them know how you felt about it - wish I had.0 -
Nisa, on one of my many phone calls with the insurance company, a condescending person on the other end of the line commented, "If finances are a problem, you can get a free wig from the American Cancer Society, which I'm sure would be adequate." After shrieking, "It's not the MONEY, it's the PRINCIPLE!" I sputtered, "If my leg were missing, I suppose you would suggest that I cut a branch off a tree and use it as an 'adequate' limb replacement!!!!"......and then I very maturely slammed down the phone!
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I like the notion that the eclipse was a gift for Special K!
Nisa, it's the Herceptin w/or w/o Neu Vax trial (Neu Vax E75 trial). It's interesting in that it's for high risk (c'est moi) women who aren't technically HER2+. Everyone receives Herceptin and then will be randomized to either Neu Vax or a placebo. The study sponsor is supplying the drugs, of course, but administration of drugs plus treatment of any adverse effects needs to be covered by one's insurer. After the first year the costs would be minimal but during the first year they could add up. Unfortunately, my insurer is taking the low road on this issue (as most). I know other women in the study whose insurers signed off on it in a heartbeat. Also unfortunately, it seems unlikely that the study sponsors need me so badly that they would pay my treatment expenses.
I have more info on the trial if anyone needs it - I'm happy to share. They'll be enrolling until the end of the year, I believe.
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I just found this thread. I am llB, do you mind if I join? I already know some of you.
SpecialK, congratulations on 5 years!
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I did stand outside with my DH and DD and look at the moon last night - I gladly share the cool sight with all of you and thank you for the congrats and happy dancing on my behalf! I feel blessed to have had great care from awesome docs and their staffs, and wonderful support from family and friends. BCO played a huge part in my ability to deal with a scary diagnosis, and it continues to be a lifeline for me.
Hopeful - I did the GP2/AE37 Her2+ vaccine trial - they did not require anything from my insurance company prior to starting. Is the Neuvax trial asking your insurance company for guarantees? I wish you weren't encountering any hindrance - my trial experience was excellent on so many levels, I want the same for you.
Ruthbru - the tree limb line is hilarious - hate that insurance could deny something so necessary to get you through this experience. Not right.
Nisa - we probably won't go out and celebrate specifically - not my style, lol! Every new day I'm given is my celebration. Just found out this morning at the PS that she will place a new expander in a surgery on our 32nd wedding anniversary, after 18 months with one flat side. My husband said he will be gladly sit in yet another hospital waiting room on our anniversary, that I'm still here is his happiness, doesn't matter where we are I am very, very lucky.
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- SpecialK fantastic news
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Welcome, Molly!
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SpecialK, A huge congratulations to you, that is awesome!!
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SpecialK, you have a good husband. I got teary eyed reading that.
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Thanks everyone!
Molly - he's a keeper for sure! He is a wonderful man, and I will add that he served his country for 28 years in the military, and continues to work for Special Operations command as a civilian. I am very proud of him, and he is a great dad too - our children adore him
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