August 2010 Mastectomy

lago

Range not quite full but getting there. I've been to PT twice now. First time after surgery then again when the LE started and I lost some range. It's still not where I want it to be yet especially on the 10 node side. Remember I also got 4 nodes on the other.

I finally started strength training today. It's weird. I have never used 3lb weights before but they told me to start slow. I usually start with 5lb. Before surgery I was  using 8 & 10lbs for upper body and 5/8/10 for lower. I hope to be close to that in 2-3 months.

soccermomofthree

lago thats great you are strength training again! 

Carrol2

Lago that sounds like a great plan. I am going to try to get in as good shape as I can before my surgery. Then I get to start all over. But have the bmx it did not take long for me to get things back into shape. There is also the issue of 8 pounds that i gained the past few months. Between travel, and having a guest from NY in between my eating got out of control.

lago

Yes I have 8lbs to lose too. Granted even if I lose 4 I'll look much better. As I said in the other thread we are similar in size. Neither of us is heavy.

Carrol2

No i was never really "heavy". I was about 162 pounds and got down to 140 in June right before i got diagnosed. So now I am 148. I need to be no more than 142 to not have to pay when i weigh in at weight watchers.

lago

Well you don't look it. I'm 136 but I was 128 before surgery. (After surgery I think I even went down to 126 but of course I started eating again). How can you possible be 10lbs heavier than me and have not thighs or a butt? You must have a lot of muscle on you.

Carrol2

I just have a bigger build i guess. I have a belly that i hide too.

lago

I don't have too much of a belly. If you have a belly then you must have great legs. I have thunder thighs.

Carrol2

ok so between the two of us and our new parts we have the perfect woman, well my new parts aren't installed yet.

Halah

Hello ladies, lots of activity on this thread lately. Good to "see" you all. On March 3rd I had PS, what is being called a revision to my BMX. I had opted for no reconstruction from the start, but I needed a PS to clean up what my BS could not do. I'm glad it is over. It's one of those surgeries where you can cancel if you want, not like the BMX where you had to get the cancer cut out of you. But it is done and am glad I did it.

I bought a bunch of new tops and feeling rather girly. I've opted to go flat for now, feeling free from the binding of a bra. But I can see prosthetics in my future, but am okay with my decisions for now.

The only SEs I have with anastrozole is that I get hot flashes. I am either too hot or too cold. I hate to sweat when I am not exercising.

Spring is in the air! And so is the pollen. Wishing all of you the best...

Mindy

lago

Hey winter. Sounds like no more dog ears! good for you. I just started Anastrozole 12 days ago. I have had some night flashes since chemo but if anything got a little better. I might have had a hot flash at dinner yesterday but really hard to tell. It lasted a second. I do think I'm having heartburn issues on Anastrozole but I'm giving it more time to see if it isn't just left over from chemo.

Glad to see you doing so well.

Carrol I used to say if they could turn me upside down and backwards I'd have the perfect figure. 

Halah

Nope no more dog ears.

Cording? There certainly are many risks to BC surgery. Luckily I don't have that now. But after my surgery I felt one or two thin cords in the center of my armpits (each) but they are no longer there.

Another risk that I hate is the idea of LE. I'd really like to speak to a specialist. What/who do I look for? My GP said I could talk to him. So we talked. I said who should I believe, a bunch of women on breastcancer.org or a male doctor?? He said he wouldn't want to take on a bunch of women on the internet. LOL. I've read the links given in the LE forum but am conflicted. Bottom line, I don't trust that he really knows. He says it is okay to lift heavy things like when I move things around my storage units. Every single one of the doctors I've run into since surgery tell me I am at very low risk and have nothing to worry about.

Ha! After that conversation with my GP he had me sit up on the table; then he grabbed the BP cuff and he told me he was going to check my BP, and paused, and said on my arm. Argh! They didn't get a good read on my calf and needed medical clearance for my PS surgery.

Okay I do have a belly. But it wasn't there before surgery! (I was a DD and couldn't see it. wink wink)

Mindy

lago

I get BP on my arm that only had 4 nodes per my onc's request. The only person who is able to get a good BP read on my let is my LE MD.The techs are clueless. I do have to request they use the manual BP pump and NOT the Machine. The machine constricts too tightly. I also do not let them do any sticks on either arm. I send them to my foot.

Did you have lymph nodes removed? If you did I would recommend asking your MD if you could go to a LE MD or PT for measurements now so you know what they are before LE. I wish I had done that. Also explain you would like to go so you don't exercise int the wrong way causing LE to develop. The LE PT can advise you on that.

LE isn't the most wonderful thing in the world but so far I'm handling it OK. It's not completely managed yet but I think part is due to chemo still being in my system (fluid retention issues) and my fingernail beds are still healing and have issues. They think I'm a between a stage 0 and I. Seriously LE in my case is much better than cancer!

Halah

I had one node on each side removed. I have diabetes so I can't get stuck on my legs according to a diabetic educator! It gets complicated when you have diabetes. My Onc says, "ya gotta do what ya gotta do" (he's asian with english as a second language lol).

I will ask my GP about a referral to a specialist. I am not sure my clinic has such a specialist. They have everything else. If they don't give me a referral then I can't get my insurance to pay for it. With regards to the exercising, when I asked about it my MD told me it was okay to lift weights. But I will send a message right now. Thx...

Sorry you have to go through LE. You've been through so much, lago! You are one tough gal.

P.S. lago,  I just love your happy dance in your siggie! lolol

lago

I had posted that as a reply on another thread and it seemed to make people happy so now I included it as part of my signature. I kind feel I need to include this one now that my hair is coming back: linky  

Hmm I think I'll do that.

sgreenarch

Hi, guys. I hope you all don't mind if I join you now. My mx was on July 29 and there doesn't seem to be a July 2010 group so if you'll have me I'll piggyback onto your group? You seem to have really supported each other and I'm sorry I didn't find you earlier. I have some questions and could use a support system even now. In some ways, especially now and I guess that's why I found you.



I didn't do immediate reconstruction. Funny situation in that my husband is a plastic surgeon and when the bc was dx we were so shocked that we couldn't think clearly. My husband is a great guy and a really good surgeon, but we were both reeling and I had heard too many behind the scenes stories of complications to be able to rush into anything. I've now been asymmetric since and it's beginning to drive me crazy. For a short time I thought I'd make peace w the situation and not reconstruct as I was nervous about the reconstruction options. Now I think I need to explore them but would love to hear some of your stories. Though I wouldn't mind, husband prefers to refer me to a colleague. (I have seen how hard this has been for him, and don't want to put him in this position if he's uncomfortable. He was, of course, with me throughout, and I am sure that I benefitted from the extra care of his hospital staff, but he was always the one to deliver the bad news, biopsy results, path, etc. I also relied on him as more than just a spouse, sort of as an in house med expert. Hard for these spouses who are doctors.)



I have been feeling very down lately, almost like a delayed reaction. I was told that this is normal. That the shock has been replaced with reality. And about seven mos it can happen. Any of you feeling this way? I am also wondering if doing recon immediately helped you. I'm not sorry I waited. It was the right choice for me at the time. But am having a rough time now.



Thanks for listening. All the best, shari

sgreenarch

Hi, guys. I hope you all don't mind if I join you now. My mx was on July 29 and there doesn't seem to be a July 2010 group so if you'll have me I'll piggyback onto your group? You seem to have really supported each other and I'm sorry I didn't find you earlier. I have some questions and could use a support system even now. In some ways, especially now and I guess that's why I found you.



I didn't do immediate reconstruction. Funny situation in that my husband is a plastic surgeon and when the bc was dx we were so shocked that we couldn't think clearly. My husband is a great guy and a really good surgeon, but we were both reeling and I had heard too many behind the scenes stories of complications to be able to rush into anything. I've now been asymmetric since and it's beginning to drive me crazy. For a short time I thought I'd make peace w the situation and not reconstruct as I was nervous about the reconstruction options. Now I think I need to explore them but would love to hear some of your stories. Though I wouldn't mind, husband prefers to refer me to a colleague. (I have seen how hard this has been for him, and don't want to put him in this position if he's uncomfortable. He was, of course, with me throughout, and I am sure that I benefitted from the extra care of his hospital staff, but he was always the one to deliver the bad news, biopsy results, path, etc. I also relied on him as more than just a spouse, sort of as an in house med expert. Hard for these spouses who are doctors.)



I have been feeling very down lately, almost like a delayed reaction. I was told that this is normal. That the shock has been replaced with reality. And about seven mos it can happen. Any of you feeling this way? I am also wondering if doing recon immediately helped you. I'm not sorry I waited. It was the right choice for me at the time. But am having a rough time now.



Thanks for listening. All the best, shari

Carrol2

HI Shari,

Of course you can join the group. This is a great place to come for support and share your journey. 

I had my surgery BMX on August 9th with no reconstruction. So I am symmetrical but i am pretty flat.  I feel very butchy with no boobs and very little hair. I understand a bit of the delayed sadness. I am tried of it all. When it was going on I was pretty sad but my husband would not allow me to sink into that pity party. He had kind of a tough love approach which was good at times and terrible at others. I had 4x of chemo that i finished 14 weeks ago. I was pretty down during all of that, kind of weepy at times. But i brushed myself off and moved on. After chemo i developed neuropathy in my hands which is unnerving and makes sleeping tough. Now I am on tamoxifen. I have muscle stiffness i think is from that could be the chemo.

so yeah i get down at times, just tired of being sick and tired.

Now I finally got a date for my reconstruction to begin on March 29th. I am both excited and terrified at the same time. I am looking forward to feeling whole again but not looking forward to dealing with the pain and discomfort to come with this long process.

I keep saying I will be happy when it's over but it never seems to end.

So I make peace with it. Even after surgery is over, even if i love my new body, I still have 5 years of tamoxifen. 

So maybe it wont be over but it will get better. Small price to pay when you really think about it to get rid of the cancer. 

lago

Shari kinda stylin' you showing up late to the Aug 2010 Mastectomy party. Some have left but of course us "fun" people are still partying here so come on it.

My BIL and SIL are both physicians… my BIL at the hospital where I am being treated. Many times I wouldn't want to wait for results so I had him check the computer to get the info. I think it was hard at times for him too because my MIL and her sister just passed 2.5 years ago. Both treated at the same hospital of course. MIL of lung cancer. Not the same as DH but it is still hard.

I too have had some mini scares but I found so far I've never been as low as I was before my BMX. I'm assuming they got it with surgery. Chemo/Herceptin/Anastrozole are just in case. I do get down a little at time since it's been  8 weeks since last chemo and I am still dealing with SE. The hair is growing although that was never a big issue for me. It's my nails… and now my eyelashes and eyebrows are coming out. I too am stiff from chemo but that's getting so much better. Exercising/stretching is really helping. Just need to be careful not to overdo.

I had TE's placed at BMX. It's not unusual for women to wait… deal with the cancer first, rebuild later. Nothing wrong with exploring now. I would highly recommend going to one of your husband's colleagues. Nothing beats the extra care you will get because of that "connection". I know I felt the difference when someone taking care of me didn't know my connection to my BL. Not that it was bad but you definitely could tell those who went a little out of their way or were a little friendlier because of it.

Do let us know how you're doing.

soccermomofthree

Hello Shari, I had immediate reconstruction and I really don't think this is so very important to do it this way because you know that option is always there.  I think there is nice healing physically that can take place doing this separately.  Maybe with the thought of Spring you are ready to move on to the next step in this process you have chosen.  I think that a colleague of your husband sounds like a good idea.  I have a few doctor friends that are married to another doctor and I don't think they would "doctor" their spouse.  I am sure that they are very into the decision making and information process of course though   I do think that feeling down sometimes after what you have been though is very normal. I remember my surgeon telling me about this even before my surgery.  I hope this helps to know you are not alone. Take care.

sgreenarch

You guys are the greatest! Like my very own support group. I've met lots of nice women who have or have had BC, but very few have had mastectomies or who've had a similar experience to me. I see that they we have some common issues but they're not dealing with breast loss and reconstruction.

I found a thread about depression that was also helpful, indirectly. I am not looking to wallow, but it is validating to see that my feelings are not unusual. Losing a breast is simply sad. I can see that I am mourning it, missing it. Missing the sensation, the warmth. Actually a bit of depression seems like an appropriate response.

For a variety of reasons I was rather secretive about the disease when I was dx. I needed to deal privately first. We live in a very close-knit community here in Israel and there have been a few deaths, unfortunately, of young mothers from BC, recently. People gets nuts enough when they hear the word 'cancer' and the sensitivity is heightened now, around here. I was afraid that no one would ever treat me normally if they knew. So I continued working and dealing with my family as if (on the outside) nothing had happened. I was fortunate not to need chemo or rads (just tamoxifen and Zometa) so I didn't have any outward visual signs, but in retrospect, I may have made things harder on myself. Its taken a lot of energy to maintain normalcy while my head's been swirling, and I think that may be one of the other reasons it's bubbling out now. It may even be that I needed to keep things 'normal' until I got used to the idea, if I were really honest. I was so relieved not to have needed additional treatments, that I felt no justification (since I was physically feeling ok) not to just return to my crazy routine (with a larger nap allowance!)  That was another thing. Knowing that others had it worse made me feel guilty about complaining at all, so I didn't. (On the other hand, I am having SE's from tamoxifen that aren't simple. And the anxiety about this stupid disease is alike.) All this stoicism is getting to be a drag, and I"m beginning to open up (as I am to you, Thank you!!) and to others here. 

 Thanks for letting me ramble. I think it's helping. And gearing up to look forward to being a plastic surgery patient (a question everyone always asks their wives....:))

 Thanks. We've got a holiday weekend coming up here and my parents are coming to visit, so lots of nice things to look forward to. All the best, Shari

lago

Shari,

Happy Purim!

I too wanted to be very private at first. I lost my job just before diagnosis and didn't want to be discriminated because of this issue. I live in a high rise in the city. Once my hair fell out and I started to wear scarves I couldn't really hide it anymore. I'm not the first in my building to go through this. Actually another woman was diagnosed right after me. We see the same BS, PS and onc. She is every private though. I reached out to her but she hasn't reached back.

sgreenarch

Lago, happy Purim, great cartoon. You sound good. Sane. Not sure if this is happening to you, bit my dad had chemo twenty years ago and his hair grew back in thicker and no grey. Still like that today. 74 and a thick head of black hair and going strong. In many ways he is my role model. He got a rare, deadly form of leukemia, out of the blue at age 53. He had a year from hell but never lost hope and is a great one to talk to (now that I'm talking...) he doesn't sugarcoat any of it. Says that some of it never gets easier (the yearly med tests) but that tome does help calm you down. Anyway, just wishing you his hair luck.



Carrol2, thanks for your nice letter. Good luck with your surgery. What kind are you doing?



Soccermom, thanks for the reassurance that I'm not insane. Makes me feel much less lonely. Can I ask if you are happy with your reconstruction. I'm just starting the research. Ok if you don't feel like talking about it.



Thanks, shari

Carrol2

shari i am getting TEs in two weeks and then silicone implants. I am really nervous about it but looking forward to feeling whole again.

soccermomofthree

Shari I am happy with my reconstruction for the most part.  I had skin and nipple sparing and I chose saline implants.  I have a divot at the top of my right breast that bothers me a bit because I see it with my clothes on if the neckline is scooped.  This is a small complaint in the scheme of things.  I also have ripples sometimes but that is common with saline and with thin skinned ladies.  Please feel free to ask me any questions you have.  I am glad your not feeling alone.  I think your reconstruction journey will lift your spirits and you will continue to feel better. 

lago

Shari there is no way my hair could grow in thicker. I had really thick hair! It's growing in both every dark and grey. It seems darker than before but I've been dyeing my hair for almost 10 years now. I'd like to think it's coming in darker but it actually does match my eyebrows. I still need some filling in on the top and front hairline but it's coming. I have more hair than Sinead a this point.

sgreenarch

Hi, Guys, thanks again for your answers. I am feeling much less depressed lately and I think it's because I've found some wonderful women to talk to.

Funny question that you may have wondered, too. I sleep on my stomach and am concerned about feeling the implants when I lie down on them. I know someone who has had 'gummy bear' implants and is happy with them. Says they are firm, but you get used to them. I know what it feels like to lie down on the prosthesis and if that's what the implant will feel like it could be a deal breaker. 

 Also, did you consider the diep surgery? Why did you decide against? It does sound like a huge ordeal.

 I read a great article in the NYTimes about a female runner who had a sarcoma in her hamstring. She had extensive surgery and they didn't know if she'd walk again, let alone run. Not only can she run, she's running well and fast and is even considering the olympics. Someone asked her if she was sorry this happened to her in her leg of all places, being a runner. On the contrary, she replied, they found it because she was a runner. Had it been anywhere else she might not have paid as much attention to it. She feels that the fact that it was in her leg and not another place saved her life.

I thought about this alot and like her attitude. I'm trying to extrapolate and adopt it. Immediately post mx I remember feeling so grateful that removing my breast may have saved my life. As time passed and I felt better physically and imminent danger subsided, I began to mourn the loss of the breast deeply and that's where I've been in the last few months. I don't mind the sadness as I am not wallowing, and I'm allowing myself to grieve a real loss. I see that you just can't skip that step, not that I tried. But the relief that I felt close to the mx was supplanted by anger, sadness and a myriad of emotions that only losing this kind of body part in this way could bring on. At times I was in a really troubled place. But I like the idea of tapping back into the idea that the attention that I paid (having a mammogram) may have saved my life, and a breast or at least something resembling one, can be rebuilt. Or not. Just some thoughts. Thanks again for listening.

We had a nice holiday here today (i'ts nightime already.) Hope everyone has a good week. All the best, Shari

lago

Mourning the loss of your breast(s) is very common. At times I morn the loss of my right nipple but not my breasts so much. I know that sounds funny but my right nipple was very "sensitive" and I miss that. Not the end of the world though.

The gummy bear is supposed to be a bit firmer than cohesive silicone. Here is the US the gummies are not approved yet but still in trials. Only a few PS are part of the trial so most of us here don't have that option. I do hear that some women do opt for the silicone anyway because they are a bit softer.

I was a stomach sleep too but I haven't slept on my stomach since my surgery August 1st. I think it actually has more to do with my arms not having full range yet than my expanders. Not sure what it will be like once I have the exchange but I do believe I will have to wait before they even let me sleep on my tummy.

I was not a candidate for diep. I don't even have enough tummy for 1 small breast let alone 2. I wouldn't have chosen it anyway. I dont' want any more scars. Hopefully the implants will work.

Carrol2

I did not even consider the diep surgery. It just sounded like cutting in more than one place would not be a good idea pain and as lago said scar wise. I spoke to a woman who had this surgery and her whole abdomen is numb from it. She said at the time she had hers there were a lot of scares about implants leaking. She said if she were to have the surgery today she would have gotten implants.

I have 9 more days until my surgery. This week will eb to get things done before that so crunch time.

lago

Speaking of crunch time. I'm trying to get my abs back into shape before surgery. Hope I can.