Mastectomy Sept 2011
Comments
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Linda, can't you take an actual break. Not cut back, but take two weeks completely off. Maybe go get pampered somwhere for some of it.
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Linda.... My BS said I needed to take 3-6 weeks off post BMX. I took 4 weeks and need it. I was feeling back to myself at that point. If you can take some time off now and give your body and mind rest.
Caryn... Good to hear you are doing better Good luck going back to work.
Update on me.. other than some swelling I am happy with my implants. I am wearing a breast strap to help move them into the part of the pocket PS opened up (move them more to the center). It is sooooooo nice having the squishies rather than the rock hard TE.0 -
Flislander... I had a pre-op with the radiation Orc to discuss my case. They didn't think I would need radiation, but they could not confirm until post surgery biopsy. He said based on my size and frame I could do radiation with TEs but he said it all depends on each persons body. I luckily had clean nodes so I didn't need radiation.
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Hi friends - checking up on my "breasties" to see how everyone is doing.
Caryn? Anxiously awaiting a report of how back-to-school is going - hopefully it's awesome.
Linda - please please please take time out. You get so much from teaching but you are going to run out of things to GIVE if you don't take time to rest. I didn't realize, either, that you've been working since week 2. I know you've mentioned it, but I thought you were making cameos over there, not that you were back at it. My PS said 6-8 weeks off and as you know, I needed it. I think you'll find that willing yourself to relax and heal will pay off in spades for you. You're depleated. Time to fill up that tank!!
FLIslander - no rads for me this time around, but welcome.
Not much to report here - back to figuring out what I'm doing with my time (besides mothering, household tasks, etc.) - this is where I was when I was dx'd back in June . . . happy to be back to exploring after a 7-month crap-fest!
Hugs to everyone,
Sarah
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Sarah, Momine, Margie, Caryn, Dancetrancer - thanks for your words of encouragement. I met with my chair yesterday, and he took me off all committees, all accreditation work, am putting a hold on my research and writing, etc. I will continue teaching 3 courses - one is just mentoring a young faculty member, one is a seminar so the students do all the presentations, and one is my passion. I think I can hang in there until the end of April when classes end. An acquisitions editor called me yesterday and I actually said "NO"!! An historic event!!!! (Well, actually, I said "call me back in August and we'll talk")
Caryn, what do you teach? I am also anxious to hear how you do.
My mother was a kindergarden teacher and was diagnosed at the end of the school year, had surgery in May, started chemo in the summer, and worked all fall through the chemo - just took a few sick days off here and there. She absolutely would not give it up either. Must be genetic - the joy of teaching, that is!
Sarah, I am glad to hear you are getting closer to getting your life back. That is so encouraging!
Margie, glad to hear your implants are behaving better. My falsies sort of shift around a litte - I discovered yesterday they were a little further forward on my chest than normal, so I looked a little "perkier". I am going to have to get some pockets sewn into my bras to keep them from roaming.
With grateful heart to all you wonderful women - thank you.
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Linda - YAY!!!!! SO glad to see you taking your workload down so you can have more healing, de-stressing, pampering time. Each and every one of us deserves and needs this after all we have gone through/continue to go through.
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Greeting from the infusion center! Am getting my monthly Aredia treatment. I have been beyond happy to be back at work. My long term sub has been with me to bring me up to speed. Tomorrow is her last day. I have had staff meetings, committe meetings, pt and now my infusion so I haven't gotten home until well after six everyday. I am tired but not exhausted. Just the kind of tired any normal person would have after a 12-13 hour day. Hooray for normal!
Linda, I am happy that you're cutting back. You need to nurture yourself. I teach first grade although I started out in high school and worked my way down. Just finished an 8 year stint in kindergarten last year so I guess I got promoted too.
Hope everyone else is doing well. Caryn0 -
Hello Ladies,
It's been quite a while since my last post but I read through the last few pages to get caught up on everyone! I am scheduled for my TE exchange this monday January 23rd and I'm actually excited as the expanders are so uncomfortable. I can't wait to get them out. I was a bit out of it at my pre-op appointment and I didn't ask my PS enough questions. So for those of you who have had your exchange for silicone gel implants, what should I expect in regards to pain? Similar to my BMX? How many bad days? How long do I have to continue to sleep on my back? My left side has serious scar tissue so I hope with the cleaning out of it I feel better and not worse. Anyone who has had this surgery please give me a good picture of what to expect the first week as I'm really getting kind of scared. Any advice is much appreciated.
Thanks so much for your insight and wisdom.
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Oh no- we were on page 2!
I missed my F/U with the PS (I forgot) and it will now be a few more weeks until I see him. Still on the fence about fips. I don't think I want them and am leaning towards the 3d nipple tattoos.
What have you guys done and sre you satisfied with the results?
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HI everyone,
I had my exchange surgery on Mon Jan 23rd. I got the Natrelle style 20 600 cc's and they look pretty good. I had skin and nipple sparing so my nipples are still healing but they look decent. Anyone else have their exchange yet?
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Hello, my friends..
I have been scheduled to exchange my DEFECTIVE right extender to the good one on Feb 9, after that- all over again, and exchange to silicone- in June, probabaly...
On the top of that my PS decided JUST TO CUT SOME HANGING SKIN FROM THE LEFT ONE AND OPEN IT TO EXAMINE IT TOO...I am not sleeping well, right one is more hurtful, left one is very close to PORT..He also wanted to remove the port, but I have to have at least 12 more Herceptin IV, so I did not agree till last surgery... I will have 5 surgeries, and my first operation was July 26... long way...I asked about Tamoxifen, they decided to do it after February 9...What about last operation? Should I wait with Tamoxifen that long?I had recently some eye infection and NP noticed some in my labs enzymes a little bigger number (64 instead of 60) , she scared me to death talking about liver problems!
Then I called nurses, and my oncologist told me it is nothing to worry about. i trust him, but still...I am still weak 3, 5 week after chemo, started walking every day.Happy for all of you and wish you speedy recovery!
I so don't want to go to operation room AGAIN...but when I look at my poor breast, I want it to be fixed.Sometimes I am thinking, that If I knew all that I would choose to be flat.May be I am wrong. 0 -
Olgah-- good to hear from you but I am sorry to hear about your difficulties. I am thinking about you.
My update-- not much happening. I had my exchange 3 weeks ago and now I am healing and waiting for them to settled in. Mar/Apr time frame we are looking at doing fat grafting/nipple/scare clean up. I hope you are all doing well and getting settled into your new "normal" life.0 -
Thank you, Margie! I am happy that you had exchange done! We are moving forward, aren't we?I think because of chemo nead I did mistake in my previous letter- I mixed up left and right extender- actually left is defective..sorry for that..
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Olgah, so glad to hear from you! Sorry you are having a tough time. Been there, done some of that.... just surviving chemo is a huge step forward! Now getting the PS to get your reconstruction done right is a priority, and once you are through with this, you can check it off your list as well. Hopefully not many more surgeries or complications for you! (I chose to go flat, but let me tell you, there is just NOTHING there to protect your chest from well-meaning huggers! - so I am wearing my new off-the-shelf soft boobies for a bumper guard!!) So having your own real breasts, even if they ARE reconstructed, should provide another step toward "normalcy".
I am still hanging in there, still having lots of pain in the back of my arm that is so irritated with every little motion of my sleeve against it while typing, driving, etc. My PCP encouraged me to not be afraid of taking the pain meds because she thinks the constant pain is part of my fatigue problem. So I am a little more optimistic today than I have been (sunny day helps, too!). I did get an LE sleeve, thinking that might help keep things from rubbing against that area, but it turns out the sleeve may be making it worse. *sigh*
Plus my insurance has different levels of "out of pocket" for "in network" and "out of network", and the new foobs and sleeve are considered "out of network" so I had to pay full price for them. $800!!!!!
and 
Jaysmommy, Margie, Caryn, all the rest of you - thinking of you, hoping recovery is proceeding smoothly, and am sending you my very best wishes.
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Nice to hear from everyone. I've had lots going on. My 3rd opinion on rads (sorry if I'm repeating myself) actually resulted in a change in my diagnosis b/c they found a 3 mm IDC and then just a few days ago I found out I am HER2+. I was about to start rads, but then they said wait to see onc next week, then RO called onc with my info and he said no chemo, now RO wants to start rads again ASAP instead. Meantime, I'm questioning the no chemo, doing all kinds of flips and somersaults to figure all of this out. I've got another thread going on about it, bout to pull my hair out, LOL. Oh well, just hope this 4 month delay in my diagnosis doesn't come back to bite me in the butt.
Sorry to ramble, I'm wound up!
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Hey there everyone!
Nice to see everyone reporting in on how things are going.
Olgah, I am so sorry you continue having issues and send bigs hugs & prayers for you. Enough is enough already so surely it is smooth sailing for you from here on out....
Caryn - Glad to here you are settling back into things. I bet your kids really missed you & it must feel wonderful to be back with all that energy...
Lynda - I hope you are able to kick back some & rest. And I too have the separate out of pockets for in or out of network so I feel your pain....
DT - I am at a loss of words. So much uncertainity for you over the past 4 months. Keeping my fingers crossed that there are no more surprises and taht you sail thru rads.
Margie & Jaysmommy - Squishies are good, aren't they? Seems like I am in similar straits with not much going on.
Had my 3 month med onc visit Monday & he was pleased with how things are going. So well so, I will see him in 6 months instead of 3 months. (that and since I have the BS f/u in March and another PS f/u in April, he figures I will be sufficiently seen until he sees me in July.) Saw my PS on Friday which also went well. I feel kinda guilty saying it but he too is pleased as I have sailed thru treatment with excellent results. Since I had NSM and need no revisions, I am essentially done with him. He wants me to come back one more time in April but plans to cut me free at that time . Never considered myself overly lucky so the fact that things have gone so well scare the crap out of me... Will be doing alot of traveling in Feb but will try to check in as much as possible.... Please know that I think of you ladies often even when I am away. Continue to wish for smooth journeys & happier times ahead.
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DT, did you get oncotype done? I don't know if you are eligible for it, but that sometimes gives some information on whether chemo might be helpful depending on your risk for recurrence. I did not have it done because I had positive nodes initially, but my MO did suggest it. Things were so mixed up with my initial diagnosis, she said because I had positive nodes and grade 3 (turned out to be grade 2 after all pathology reports were in) and tumor was over 3 cm that chemo was indicated but there was no way to tell for sure if it would be effective. It probably was to some extent, but the SEs may have been avoided if I had just done tamoxifen - which in some cases is appropriate and adequate, may be better than chemo, and certainly has fewer severe SEs than chemo.
And since you are also Her+, I can see why your MO might think not to do chemo but do the hormonal + herceptin treatment (I am a little foggy tonight, hope I am making sense). Also, I had multiple delays at the beginning because of BS issues but they told me that those delays do not ultimately affect outcome. (I am not so sure tonight.... keep wondering if she had taken the damn thing out without a 2 month delay if things would be any different.... but probably not).
Sorry to ramble... it's late, I'm tired, but truly am doing much better overall, even if I sound a little perturbed.
Odie, so glad to hear you are doing so well! Keep on moving forward, and keep us in the loop - you are so encouraging!!! Thanks
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Hi Linda!
Actually, the Her2+ trumps the oncotype test. Typically if you are Her2+, you automatically get chemo and herceptin b/c it is so aggressive, even if you are node-negative. However, the standard is for tumors > 5 mm. So few patients with < 5 mm are Her2+ that there isn't a consensus on how to treat - only retrospective studies, and in those studies, the sample size is very small. So, onc's tend to have varying opinions on whether to treat < 5 mm Her2+ tumors with chemo or not. That's the dilemma I am in. I am going to get a 2nd opinion, but probably will need to start rads in the meantime since I am already so far behind schedule. Hoping I get answers before I get too far into rads, b/c the standard is to do chemo first, a break, then rads.
Thanks for the support girls.
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Ah, now I see! I completely understand why you would consider chemo even with a small tumor - if you want to be as aggressive in your fight as possible, this would make sense. I know that when my MO and the RO were pushing me toward starting rads, they indicated there was a good 6-12 week window for starting AFTER chemo. Doing them together may lead to more SEs from both of them as they both cause a lot of inflammation and it's not just additive.
I hope you get some answers and guidance from someone you trust. This "not knowing" is a horrific stress. And those of us who get very anxious about EVERYTHING get even more stressed when our docs can't figure it out - we depend on them for guidance, and when they are wishy-washy or want to "let you make the decision" it just doesn't seem fair. They have a lot of knowledge and experience, and although we should be well-informed, it would be really nice if sometimes they would just say "in my experience, this is the best thing we should do, but if you really don't want to do it, then let's talk further, and let's decide on a course that would best fit you and your life values." This would include being more aggressive or less aggressive, depending on personal goals and circumstances.
So Dancetrancer, I am lifting up positive thoughts for you tonight, hoping you get some rest, and may you come to decisions with your docs and that you are at peace with them.
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Thank you so much Linda!!!
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dancetracer --- wow you have been thrugh so much. I am hoping you get all your question answered during your 2nd opinion. I'm sending you tons of good thoughts....
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Olga, Caryn, Dancetrancer, Margie, Momine, Odie, Jaysmommy, SAOlsenberg, and all the rest of you - just stopping by to see how you are all doing. I am still doing the 24-hour rule, and getting by, a little better each day. Feeling much better off of Effexor - one more set of SEs gone, hoping the SEs it was aimed at are also gone by now. Still dealing with unusual arm pain - may be centralized nerve pain (or something like that - can't remember the exact technical term right now). Wishing you all a good week - recovery from surgery, recovery from chemo, moving forward with inner peace.
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Hello ladies - been so long since I've checked this board . . . been thinking of you gals lately. DT, my gosh - what is the latest with your chemo/no chemo decision? Talk about ever-shifting tides. Hope you are hanging in w/all these twists & turns. Linda, glad you're taking it day-by-day and that being done w/Effexor is offering some relief, at least. All the SEs, the more meds to deal w/the SEs . . . ends up in a bad cycle sometimes. Here's to breaking that and getting on with good times for you.
Been feeling good lately - noticing the foobs less and less, feeling more and more like me. Went and got fitted for new bras on Monday - am now wearing a 32D?! Was a 34B, but they say when you move down band sizes, you move up cup sizes. No waaaay I'm a real D. In any case, I feel so much better about life now that I'm not wearing "bralettes" (the sweatpants of bras, I think).
Everyone - hope you're all having a good week. I think of you often and send good mojo your way!
Sarah
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Hey ladies!
Linda - I am so glad you are doing better without the Effexor. One foot in front of the other .....I considered Effexor due to the wonderful weepiness from the Tamoxifen but just couldnt bring myself to take a pill to counter the other pill .....Luckily it has gotten better on its own.
Sarah - Great to hear from you and am so glad you are doing well, back to living! May not comment here as often as I used to, but I still think of you guys often.
DT & Olgah - please let us know how you are doing.......
Wishing everyone well at whatever part of this stupid journey you are in and send love & prayers to each & every one of you.
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Hey guys, thanks for asking about me. Essentially I have different opinions on chemo/Herceptin, and since I've already been simulated I went ahead and started with radiation yesterday. It's not the norm to do rads before chemo, but, it is what it is. I had to pull the trigger on something. So far only 2 rads tx. Not much else to say right now. I hope everyone is doing well!
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DT, I think I read somewhere that there is not much difference in whether you do rads or chemo first - just doing them together has higher risk of SEs. So getting on with rads now at least gives you some time to figure out the chemo questions. And the most likely place those errant cancer cells are located right now would be in the local area, so rads should clear them out! Are you having rads on both sides????
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Thanks Linda! And no, just to the left side. Initially they said bilateral, but a 4th path review showed the DCIS on the R was free and clear of the margins. It was pleomorphic LCIS in the margins there, and they said rads is not needed for that (I hope!).
Final path showed close margins both anteriorly and posteriorly on the L, so no getting out of it on that side. LOL! I tried! So far, so good - 3 down, 25 to go!
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I had a victory today- one of my patients who has a very stong family histoty of breast cancer and extremely reluctant to get a mammogram got one last week. Her comment to me was "I did this for you and what you've been thru" YEAH!!! It was negative.
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Groovygirls - Thanks so much for sharing your story. While it sucks to have to take this journey, there is comfort in knowing it has made a difference. I know once I was diagnosed, several girlfriends and family members decided to be more diligent with their own testing. If it catches it early or saves a life, then at least the journey was not in vain.
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Hey friends - checking back in on ya'll.
DT - hope rads go OK for you - Like Linda said, it shouldn't matter much that you're doing radiation before chemo - just getting 'em both in if you need them both is the most important.
We leave tomorrow for a vacation - my first time flying w/the implants, and more important, my first vacation since this whole ordeal . . . really looking forward to kicking back and REALLY TRULY relaxing w/my family & friends.
Hugs to all of you,
Sarah
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