MIDDLE-AGED WOMEN 40-60ish
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HAHAHHAAHHaaaahaa!!! Ok, I am nearly an idiot today, slept in, and am on y first espresso, but what is TAH-BSO?
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Nahhh, it would take more than one espresso to decrypt that one.... Total Abdominal Hysterectomy with Bilateral Salingo Oopherectomy. In other words, I have no internal ladyparts left!!! ;-)
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Yikes!
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Beergirl, welcome! I had my lady parts razed as well, in connection with cancer treatment. Oh, and I had a double mastectomy too, so I am pretty much all set to transition ;P
Is the recurrence more DCIS or is it invasive this time? Either way, what a drag and I am sorry.
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Beergirl--welcome to the Middies, and so sorry to hear about the recurrence.So not fair after all you did 6 years ago.
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Momine....LOL about your comment about transitioning! We have to have a good sense of humor - laughing is much better than crying. :-)
Cancer isn't fair - not for ANY of us. But, we deal with it and go on forward with our lives. There is no other option, because if we do it any other way, cancer wins and controls us.
As far as my current Dx, I'm not sure yet if it's DCIS again or if it's invasive. I should know at least something more after Thursday morning's appointment, since it will be more informative than the brief phone call (per my request) to tell me that we were dealing with a malignancy.
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Eph3_12, beergirl63 and heartsoul76 - good news from Tiffany L. Greene, Program Department Assistant, Casting For Recovery- the only requirements to attend a FfR retreat is that you are female and a breast cancer survivor. She also says it doesn't matter how many years you have been in remission. I guess you just have to be unlucky enough to have had bc and lucky with the lottery to be accepted. It does look like a number of the retreats are limited to residents of that particular state, and the the Canadian arm of the organization is not active. :-( Flyfishing is awesome and time spent in or beside a river is good for the soul.
Thanks for mentioning "Time is a River" Eph3_12. I will look for it. beergirl63- best wishes for good news this week.
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Hello Ladies,
I am fairly new to these conversations and how it all works so I am sure there is a place here already that has already discussed this.
I am 46 yrs dx Stage 1 BC back in 2012. I was given Tamoxifen treatment and have been on it for 3 years this September. I had a total hysterectomy July 2013 and between that and the Tamoxifen, I have very little estrogen in my body.
I have had some joint aches, knuckles, wrists, knees, toes, worse when it is really cold that come and go. They seem to be worse in the AM. Lately I have had minor muscle aches in my legs (at night). Not pain or restlessness, just tired feeling like I have been on my feet all day long. I just started taking Glucosamine/Chondroitin and was wondering if any one else has had similar symptoms and if there is anything they take to help with this.
I see my Oncologist for my 6 mo follow up in May and will see if she has any recommendations.
Thank you and I appreciate any info you can share. Blessings!!
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Welcome, beergirl63, and thanks for bringing your first posts to our group! Your story hits home (in a frightening way) because I am at 5 1/2 years myself and know I have to keep the watchful wariness going even still. I love the Nail Pouch idea they gave you. After you are done with the drains, keep the Pouch for toting those beers around! I had lumpectomy with my BC, so no drains, but then had one drain for another cancer surgery. I found it very unpleasant, but luckily it did not have to go home with me. With pillows, I went the route of Deb2012, just made myself a nest of them. That was a pertinent observation about all recliner handles being on the right. You definitely do not want to have to be leveraging on that side for a while. Finally, I LOVE your sensibility about the "no weather talk here" policy that I like to enforce to with my pink velvet fist. Now, if you also love Cheetos, I will set you up with a "premium membership" to this thread!
Additional howdy to acalilgirl! To me, it sounds like you have middle-aged arthritis going on, but I recall others posting that the Tamox. seemed to worsen it. The aching muscles (especially in calf area) is very common with Tamox. I did have it. I've taken the glucosamine combo before, not for anything Tamox. related. I did not get any improvement, but that is one of the supplements that each person kind of has to guinea pig themselves with. If you are taking a supplement with hyaluronic acid as an additional component, I would say Google around about it. Seems I read something that it can encourage tumor growth. May be relevant, perhaps not, but you might want to check.
Casting For Recovery - I wanted the getaway more than the fishing, but did not get chosen. The last notice I received, I did see that some states are woefully under-served. My nearest was 3-4 states away and I'm not that desperate to fish. Yes, Sherryc went and said it was great; so, with no expiration date on qualifying to go, why not keep entering? You would have to be "recovered" enough to use your casting arm, at least, so no one would be fresh out of a surgery, right?
HnS, Now that malignancy is ruled out, I hope you find out what strange affliction is going on with your side boob. Let us know what the dermatoligist thinks about your airport radiation theory (even tho' the latent SE's usually get downplayed.)
Speaking of radiation, I just had some...Got my CRC (that's colorectal cancer, my new gals) follow-up CT yesterday. Should have results this week or next. I think I aced this test, so don't feel worried. However, that still did not prevent me from asking how much radiation I got in that one fell swoop of chest, abdomen and pelvis views. I'm guessing a lot! Instead of a direct answer, the guy game me a website, which looks extensive and I haven't navigated around yet, but I want to pass it on. Looks like it is very informational, so all those with rads questions (before during and after) may like to look:
Woo-whee, I'm not used to typing these longer posts anymore. Cheerio, my lady-sister-girls.
p.s. Found a bookmark, so while on subject...
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Woo-hoo! I love Cheetos, so I am in!!
Thanks to all for the observations and information. So, I just met with my oncologist. My tumor is ER+/PR+ and we are still waiting on the HER2 results, which should be available Monday or so. I will have a bilateral mastectomy and unless the HER2 comes back positive, no chemo. I will have to go back on hormone blockers, so I'm ready for the increase in hot flashes. Good thing I am cold-natured! I have consults set up with 2 surgeons and their respective plastic surgeons they partner with. I just need to decide between going with the expanders or the DIEP flap. Any information is welcome.
So, the wild ride begins....Glad I have all of you there for support.
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Beergirl, that sounds about as good as it can be, all things considered. If you don't need radiation, your chances of a good reconstruction outcome, by either method, are vastly improved.
But since you asked for info, I thought I would throw in there that it is also an option not to reconstruct. I was asked to wait with recon for 2 years. This gave me time to a) find out what it was like living the boobless life, and it really isn't that big a deal, for me anyway, and b) really research methods and outcomes of recon, including looking at a gazillion before/afters.
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Momine, Radiation isn't really an option, since I had radiation on the same breast the first time around.
So, have you decided to continue the boobless life? I think my husband is sadder about me losing my boobs than I am.....I love him to death, but he's a typical guy. We women seem to be more pragmatic about things.....and deal with health problems better. LOL I told him to look at the positive side....I'll have the boobs of a 20-something instead of a 50-something. Bless his heart, he said my boobs are just fine how they are!
I have looked at a gazillion before/afters. What i would like to see is photos from both of my potential plastic surgeons, including women several years down the line, so I can see them after procedures have been fully completed and scarring has faded. My only thought is that the skin will still be pliable and there will be a sufficient amount if I have the immediate reconstruction. I actually watched a video of a DIEP flap surgery, which was fascinating. I have lots of questions for the two breast surgeons and plastic surgeons. I have my first consult today.
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Beergirl, yes, I am in my 4th flat year. I wear minimal foobs when out and about, usually anyway. You should definitely ask how the prior radiation will affect outcomes.
It is a very personal matter, and I am not trying to tell you what you should do. Just thought I would offer yet another perspective on it. In my case, because of minimal tissue (very little muscle on my upper body) and lots of rads, my chances of a decent outcome are virtually non-existent. Flaps are not an option for me (no tissue). Each case is different though, and it sounds as if you should have a great chance of a good outcome. Do ask lots of questions is all. Those PSs tend to think they can do miracles and like to downplay complications etc.
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Hi beergirl, Whatever you choose, you will be happy because you are a proactive patient who is researching everything. Great job! Now, I'll weigh in with my personal opinion.
You will not have the boobs of a 20 year old. You will have the foobs of a 50 year old. You will feel temperature and pressure. You will likely lose all the sexual stimulation of your breasts. Ask you PS about this with great specificity. My husband figured out pretty quickly that Tweedle-Dee not Tweedle-numb is where all the action was. Tweedle-numb was a convenience for me that I didn't want the bother of prosthetics and I'm too vain to walk around asymmetrical/lopsided. Also, the more invasive a surgery, the more parts cut, mean the more potential for pain, screw ups/surprises and longer recovery time. Just factor that in about recovery.
You didn't mention if you've any plans for nipples? areolas? sparing? Again- if sparing- any nerves cut? Please fill us in. A fellow traveler I know went for the fat grafted nipple after a latissimus dorsi and it got infected. It didn't take the first time. Hurt like heck and eventually they got it right. Also, some women talk about how they get a "tummy tuck" with the DIEP. It also adds more pain and recovery time. But, they heal (and now have a lovely massive scar to go with the breast scars.
I was very, very fit when I had my MX. I couldn't wait to have my lift and squishy installed because i HATED my TE. That surgery was done at my urging, 90 days post my MX. It wiped me out. Two major surgeries within 90 days really clobbered me and the AI meds kicked in during recovery to smack me with joint pain, cognitive function, hot flashes etc. on top of recovering from surgery.
It is becoming more common for women to not reconstruct. Depending on my age, I could see myself not reconstructing if I had a recurrence. BCO has a section on reconstruction. I have a blog on it with photos. If you are interested, PM me and I'll send you the URL.
You will make the right decision for you because you are thoroughly doing your homework and are prepared to ask lots of questions of your surgeons. You're not shrinking from that. Keep us informed. We're rooting for you.
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I didn't take it at all as you trying to tell me what to do. I appreciate your frankness. I didn't have too many after effects from the rads. I have plenty of abdominal tissue.... LOL! So a flap should be an option for me. Of course, I will ask the PSs to show me photos of their best outcome and their average or normal outcomes. I'm planning to ask the BSs as many questions as possible, since they might be less prejudiced than the PSs.
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Each person decides for themselves which is the right way to go.
When someone "keeps it real," like Deb2012, the purpose is not to steer one way or the other but to provoke another into thoughts and questions for discussion with their own surgical/treatment team. I think that is very helpful.
I follow beergirl63's story with interest because her initial Dx was very similar to mine and I am about as far out as she is too. I think if I ended up with recurrence, I'd not bother with reconstruction because I'm on the small side anyway, so flat would not be that big of a change for me, looks wise. Mentally, ALL the options freak me out. It's that cutting on the body thing. But, I do understand that recon surgery to return the body to "the way it was" (or some semblance thereof) is one more step that many do need to move forward, which is the important part.
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Thanks for all the info, Deborah2012. You have all given me a lot to think about. I think I sent a private message in response to Deborah2012's offer to send me the URL of the photo gallery to the wrong person....sorry in advance.
Okay....noob question - what are foobs? Fake boobs? Oncologist said no nipple conserving on left breast since this is second time around. I want to ask about right breast nipple conserving.
What are thoughts on bilateral even though only left is absolutely necessary medically?
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Beergirl, yes "foobs" are fake boobs, whether the built-in kind or the stick-in-your-bra type. I razed the whole rack, although I only had a DX for righty. However, lefty was full of LCIS it turned out. Again, that is very personal. It is a fact that you lose sensation with the BMX. The recon will make you look like you have boobs when you are wearing clothes, but they won't work like boobs. For that reason some women choose to keep the healthy breast, to retain sexual function, and that does make a lot of sense.
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Well, as I said I only have DX for lefty. And, to be honest, I hate the thought of losing sensation. Just still not sure. Maybe I'll just go the crooked route and call it a day so I can at least have sensation in righty. I definitely have a lot to think about.... my sister is going with me to my consults. We will have LOTS of questions. I have always been proactive and always believe in speaking up and researching and being informed. I know all this is especially important with this stinking enemy of ours. I am very happy I found this forum. You lady sisters are a true inspiration and a definite source of awesome information.
I really appreciate all the honest, straightforward feedback that you have all provided. It is extremely thought-provoking and gives me a perspective I couldn't get anywhere else.
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I'm 53 yrs old (until 3/26) have two adult kids that are doing great and are very supportive. DH is also pretty supportive but things changed about 7 years ago so not what it could be,,,,I feel this recurrence was my body telling me to slow down, examine your priorities, debts, etc. The issue I have is I will probably never be able to take off work and enjoy any kind of retirement because we borrowed so much in student loans for our kids. I don't regret it for a second and I spent money foolishly over the years sometimes retail therapy. I want to do so many things still like travel outside of the country, inside of this country, hike at least a big part of the AT, go on a cruise, see Italy, and the list goes on. Maybe what I'm trying to say is how did I get here? I've heard people ask that question and was baffled by their confusion. I am so grateful for the things that I have but it's the experiences I'd like to have before this Stage 2 morphs or whatever it does, into something more. With a unimx in 2011 with "just DCIS" I was quoted a less than 1% chance of recurrence but the first week in Feb I found a hard round something that turned out to be a triple positive 2.2 c tumor. Had it removed, started chemo this past Tues. Planned to return to work on Tues but having some trouble keeping anything inside me! Starting on the BRAT diet and Imodium in hopes it will resolve.
Thanks for the chance to vent and be heard by those who are most likely to understand.
If you have room for one more sister in this group I'd love to join up!
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DavisD: always room for one more. Sorry you have to join the club.0 -
DavisD, welcome! Sorry you are another to show up with the "R-word" (recurrence.) Both you and beergirl63 had the kind of prognoses that is usually labelled as "good" but cancer does not seem to follow the rules too well. I think when it is the second time around, it is not so much the knowledge that you need, but just support to do it all again. We are here for ya!
I am sure you have quite a bit of info. about recon that you could share with beergirl63. I have a question along those lines...You had recon...then, since you found the hard lump yourself, how did a 2 CM palpable lump get overlooked by mammogram? Is it more difficult to image breasts that are reconstructed?
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Eli- Regarding DavisD's recurrence, it looks like she had an implant placed, so that breast would not have been mammo'd. As a uni with a mastectomy and only one implant, I was (and am) a bit concerned about that. I asked about MRI or ultrasound for righty in conjunction with the mammo on lefty, but didn't push it last year. I think I read that doing those procedures every three years is standard, although it differs among care providers. When I feel the need, I will definitely push to get it done, and thus far, I've been able to get what I want done through Kaiser. But I've often had to stand firm before my wish was granted.
You ladies with recurrences provide a reminder to us all that we need to remain vigilant, no matter how far away from our original dx. My heart aches for you for having to go through it again. But you know the ropes, and you'll get through the course...again.
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SnS, of course! I was getting myself confused between her and bg63, who did have Lx + rads. Yes, with Mx and no recon they don't have anything left to squich in the squisher; and so with recon it would basically be the same because it would just be the implant and some skin to image anyway. I am guessing that an implant might be too delicate to withstand the usual 1,000 lb. psi our breasts normally have to endure for the squishing? Still, something needs to check on the ol' chest wall now and then, doesn't it?
I am really quite ignorant about all things implant & recon., so forgive me.
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Thanks for such a warm welcome! To answer your question regarding how this could be missed/happen at all-my annual follow up wasn't due until July. Fortunately my PS really stressed I would need to massage the fake breast/implant every night w/cream for as long as I had it. I had a skin sparing, nipple sparing mx finally completed in 2012. On my "good side" I have atypical lobular hyperplasia and even though the first surgeon wanted to take them both I got a second opinion. The BS I went with didn't see the need, thought we could monitor closely. And so we did, every year I was certain I'd be called back and every year "your stable." So when I felt a hard marble like something below the implant around the incision site I was sure it had to be something broken off from the implant. Saw the PS first. "Nope but it needs to come out and biopsied." Scheduled for 2/23. In the meantime I found another tiny knot which freaked me out. Called the BS who promptly squeezed me in. Still not worried. Remember less than 1% chance of it being anything? I think I knew by her expression and "I don't like the way this looks." She took a sample right in the office and it came back positive for cancer that week.(The tiny thingy wasn't anything but it prompted me to get on the phone to her) The plan changed and the two surgeons worked together removing the 2.2 c tumor, sent node biopsy and new implant to replace the previous one (had some issues). I really expected the other side to rear an ugly head so to speak, but not this..I can't change it though and I'm just trying to stay as positive as I can. I'm sad and a little angry sometimes but right now I'm just trying to adapt to having chemo which I didn't have with DCIS.
I really wanted to share this because even though the chances are slim, we all should stay vigilant. This is our lives on the line.
Thanks again for the warm welcome and I will read this thread so I can know what my 40-60 sisters are dealing with and hopefully offer some support.
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Good news of the day. I passed my CT scan with flying colors!
The bad news is my liver has not "slimmed down." Leave it to me to have a rebellious, stubborn liver.
p.s. BTW, I am not saying it is at the root of my chubb-ed up liver, but the drug Tamoxifen can contribute to "fatty liver disease."
My final event of the follow-up triathalon will be in a few more days when my CRC surgeon gives me a cursory groping. (DRE...Google it...TMI...Ahahaha!)
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Hey Elimar,
What are you trying to be some ambassador for the foie gras crowd? First a bacon tiara and now a fatty liver. Sheesh!
Smiles for the clear CT.
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There's just no reasoning with a wayward liver like that. If the tiara fits, I gotta wear it.
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LOL!!!
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