Dis Breast Cancer Survivors Part II -GAGWTA!

[laurabelle]

Thanks Laurie! We went during Easter week in 2004, I think it was April that year. The weather was gorgeous! It's so nice to sit outside and eat...I'm planning on Easter dinner at House of Blues eating outside on the back porch over looking the water...I'll be thinking of you!
I hope the links help. Please let us know if you and your hubby look into it...

 

[snappy]

I'll be like pixie dust in your pocket, Laura.

Pictures, please!!!

Enjoying my azalias in full bloom. Good season for them this year for some reason. We have a lot of large bushes that I keep trimmed down. They are really looking good and getting some lovely new green growth as well.

Spring has sprung here.

And it is crawfish time !!!! Made my etoufee this past weekend, I believe I need another fix this weekend.

Today is my best friend's birthday, wish Cindy a happy one for me.

 

[Pea-n-Me]

I just saw this on t.v. and passed along these links to her.

My husband was scheduled to have the Pillar implant done two springs ago - if anyone remembers, his company was sold and he had to postpone the three part surgery while he got settled in a new job. In his case, he had to have a tonsillectomy first, then a sinus drilling/septum repair second, and only then would the Pillar work for him, but eventually he could lose the CPAP. We saw a well known ENT for it (providers are listed on the website). It's still on the plate tho DH isn't in any hurry to have all these surgeries.

Hugs to all who need them.

Am having my MRI Sat morning, smack in the middle of a funeral that I should go to. But I've already postponed it once and I'm already there for work. Will let you know when I hear results. Thank you.

GAGWTA

 

[snappy]

My husband was scheduled to have the Pillar implant done two springs ago - if anyone remembers, his company was sold and he had to postpone the three part surgery while he got settled in a new job. In his case, he had to have a tonsillectomy first, then a sinus drilling/septum repair second, and only then would the Pillar work for him, but eventually he could lose the CPAP. We saw a well known ENT for it (providers are listed on the website). It's still on the plate tho DH isn't in any hurry to have all these surgeries.

Hugs to all who need them.

Am having my MRI Sat morning, smack in the middle of a funeral that I should go to. But I've already postponed it once and I'm already there for work. Will let you know when I hear results. Thank you.

GAGWTA

I forgot about your DH's surgery. That's alot of surgery. I doubt I could talk my DH into that much.

I wonder if all three steps are common?

Good luck on the MRI. I think you are smart to get it behind you. Keep us posted.

 

[MerryPoppins]

My DH has a CPAP too. I sent him the links. Poor guy has an award winning uvula (or however you spell it). It's so long that if he coughs it sometimes lands on the back of his tongue. I know he'd love to lose the CPAP, but we sleep so much better now that we can't complain.

 

[DeeCeeSW]

GAGWTA!

Thanks to all for responding, as always.

I hope that everyone is feeling well, or at least better! Good luck with the MRI, Linda.

One piece of good news today. I was able to switch my Disney vacation from the end of August to mid-December. Same great rate (40% off!), same resort (WL) and same view (woods). Only downside is that I'll have to pull DS out of school for 7 days, but, OH WELL...those administrators will just have to deal!

No calls from ANYONE today regarding my surgery. I will be calling PS's office tomorrow morning (I have an afternoon appt.), and will ask what has been decided as I see no point in driving all the way over there for him to tell me they can't operate until May. I do, however, want to hang onto PS, so I will not let on that I actually have another plan, and I will request to see him at a later time (as there will be plenty of time to see him if I'm being operated on in May, right?!).

Backup plan (which may very well end up being THE #1 PLAN) is going to the Tuesday appt. I set up 3 weeks ago with another breast surgeon in NYC at Columbia-Presbyterian (Doc is FEMALE!).

Maybe all of this heartache has been for a reason? Perhaps all of this difficulties have been a sign that I should have been looking elsewhere to begin with????

Maybe!

The way I see it is, very little time has been lost. The new surgeon would need to do the sentinel and then the surgery. Only downside with this possible new setup is that I'll have to find an NYC plastic surgeon and that might take some time. I will call her office tomorrow and see if they are willing to recommend docs to me now, then I'll be off to PS land again!!

It CAN be done if it HAS to be done. Maybe I will actually have this surgery before summer??!!

I'll keep you all updated.

Dawn

 

[annrae]

Barbara, glad you are being monitored. It sounds pretty scary though. Have you had episodes like this before?

I totally get what your DH means by Darth Vader. The CPAP thing looks and sounds like the character. DH hates his but he does use it. Have you gotten used to yours? DH started with his in 2003 and has yet to be able to fall asleep easily with it. He has to be dog tired in order to nod off.

I received the monitor results today and the Cardiologist has increased my heart medication which should relieve the symptoms. Believe it or not, I was originally diagnosed with "Broken Heart Syndrome" and my first episode was on Thanksgiving morning 2 years ago. If you go on the internet there is a lot of information about this syndrome. I was hospitalized for 3 days, had an angiogram (done with going through my hand instead of groin) which was fine but ended up having an episode while I was being monitored in the hospital which showed tachycardia. The symptoms are frightening as I never really feel them coming on and they are over with very quickly - the first time I fell on the floor, second time I was in the kitchen and sat down before I fell. Anyhow, I'm seeing my Dr. in early April and we will go from there.

Thank you for the links Laura - I've not heard of this procedure and will look into it as we have an excellent teaching Hospital in our area and perhaps they do it there.

Laurie and Melissa - I've had a very difficult time adjusting to the CPAP machine. I'm a stomach sleeper so it's difficult to fall asleep on my back. Instead of the mask, I am using the nose piece - I have yet to go all night with it on and wake up many times during the night - however, I do feel better and have much more energy than I did before. During the sleep study, I slept for 4 hours and stopped breathing a total of 271 times - that is what started it all - my DH did not think I was breathing when I was asleep so I did the sleep study.

With everything that so many of you are going through at this time, this is a very minor issue and I hope I haven't complained too much. Thanks. Barbara

Dawn: I hope everything is in place for you soon and you don't have to wait too long. It is hard to hang in there and play the waiting game.

 

[snappy]

How very smart that was to set up an appointment three weeks ago for another opinion with the surgeon. That is one I did not think of suggesting, although I saw 2 surgeons myself before I did my mastectomy.

You will enjoy WDW in mid December so very much more. August is so dang hot. Plus is that you will get to see decorations as well. Glad you were still able to take advantage of the 40% code.

 

[snappy]

I received the monitor results today and the Cardiologist has increased my heart medication which should relieve the symptoms. Believe it or not, I was originally diagnosed with "Broken Heart Syndrome" and my first episode was on Thanksgiving morning 2 years ago. If you go on the internet there is a lot of information about this syndrome. I was hospitalized for 3 days, had an angiogram (done with going through my hand instead of groin) which was fine but ended up having an episode while I was being monitored in the hospital which showed tachycardia. The symptoms are frightening as I never really feel them coming on and they are over with very quickly - the first time I fell on the floor, second time I was in the kitchen and sat down before I fell. Anyhow, I'm seeing my Dr. in early April and we will go from there.

Thank you for the links Laura - I've not heard of this procedure and will look into it as we have an excellent teaching Hospital in our area and perhaps they do it there.

Laurie and Melissa - I've had a very difficult time adjusting to the CPAP machine. I'm a stomach sleeper so it's difficult to fall asleep on my back. Instead of the mask, I am using the nose piece - I have yet to go all night with it on and wake up many times during the night - however, I do feel better and have much more energy than I did before. During the sleep study, I slept for 4 hours and stopped breathing a total of 271 times - that is what started it all - my DH did not think I was breathing when I was asleep so I did the sleep study.

With everything that so many of you are going through at this time, this is a very minor issue and I hope I haven't complained too much. Thanks. Barbara

Dawn: I hope everything is in place for you soon and you don't have to wait too long. It is hard to hang in there and play the waiting game.

Is the CPAP a recent thing? It does take a while to adjust, a few months on the low side.

I have never heard of broken heart syndrome. I'll google it. Always learning something new.

Hope the increase in your dosage helps.

And don't be a silly goose, you are certainly not a complainer. We are all here to listen.

 

[snappy]

My DH has a CPAP too. I sent him the links. Poor guy has an award winning uvula (or however you spell it). It's so long that if he coughs it sometimes lands on the back of his tongue. I know he'd love to lose the CPAP, but we sleep so much better now that we can't complain.

Merry, I had so much trouble sleeping with DH's snoring. It seemed to get steadily worse over the years, until I accompanied DH to his doctor and we spoke about it. He was set up for a sleep study pronto. I believe that doc probably saved his life, all because I mentioned how bad the snoring had escalated.

Snoring is problematic to the bed mate, but the low oxygen levels and as Barbara said the lack of breathing are the essential issues.

 

[DeeCeeSW]

GAGWTA!

Just an update that PS's office called this morning to inform me that surgery has been scheduled for April 14th. PS will be going on vacation the following day and is only doing this bc apparently neither doc wants me to wait until May (hallelujah). And get this--BREAST DOC will be doing follow-up for PS while he is on vacation. Not, PS's covering doc, but breast doc. Very interesting. I managed to change this afternoon's PS appt. and changed it to next Friday so that I could stall for my second opinion visit with the breast surgeon on Tuesday.

So, get this---DH calls me from work at 7:30am. to tell me that he received an e-mail from his benefits coordinator that our insurance company (Aetna) is adding MEMORIAL SLOAN KETTERING to their list of participating hospitals as of APRIL 1st. Ummm...ok. So what does this mean for me now????!!!!

I JUST got comfortable with going to Columbia Presbyterian (great rep too) but now the #1 cancer hospital in the U.S. is available to me???!!! Now what??!!!

Of course, Aetna isn't on board until April 1st, so it means that I have to start completely from scratch; find a surgeon, hope to get an appt. quickly, see a PS, hope that they can coordinate, etc. We may be looking at May again.

I am SOOOOOOO tired. Each day brings another extremely important decision to make.

AAAAARGGGGHHHH!!!!

ETA: Just called MSK's physician referral service. Oh my goodness. Talk about easy and pleasant. Have made an appt. for April 1st (when my insurance takes effect). Am I cutting it close or what??!!!!! Woman on the phone told me that surgeries are usually scheduled 1-1/2 wks. after consultation. And how long have I been waiting? PSs are available IN THE HOSPITAL. ALL docs in the hospital are covered under the plan (unlike my hospital where I had to choose between bc only one took Aetna). We specialize in cancer treatment she said, this is all we do. So let's see, surgery scheduled for 4/14 in NJ. Second opinion on Tuesday in NYC. Third opinion (so to speak) at the top hospital. Do you think I can make things any more difficult for myself?

 

[snappy]

While one way of looking at it is making it more complicated, another way is to consider that you are covering all the bases. My brother lives in Manhattan, and when he had something going on in 2005, he chose SK and was very happy with his doc, the lab, everything about it.

He had a lot of diagostic tests but no surgery.

I think it is great to have options.

I think you will KNOW the best path when it presents. Have more to choose from provides a chance at a better decision.

I think you are doing exactly what I would have done in your shoes.

Thinking good thoughts for you tonight, Dawn.

 

[#1Disfann]

GAGWTA!! Hope you are all doing great! I just had to report that I had my last chemo treatment today! Gosh, It sure feels good!

I will have surgery on the 31st and then move on to rads. Also found out I should be all done (with rads) at the end of May...not going into June at all which I thought I would have to! Looks like I will have a little extra time to recoup before the June 23rd Vegas trip.

I also get to make my ADR's next Friday for our Free Dining Bounceback September trip!! Yahoo!!


Another step closer to the finish line!! Hugs all around, Lori

 

[DeeCeeSW]

GAGWTA!

Congrats, Lori!

Thanks for the encouragement Snappy.

I am having a mini-freakout here. I checked out the message boards at breastcancer.org and did some reading about what the LAT flap surgery really entails and it's scaring me quite a bit. I do not know if I am prepared for the long recovery period.

I must be living under a rock, because after 4 weeks out of diagnosis and lots of research, I still know very little about immediate reconstruction.

Is it fact that in order to have silicone implants after a bilateral mast you must have expanders put in first? I thought that was just for saline. I guess I didn't bother to research it too much because (as you all know) I did not consider this type of surgery before. Is it ALWAYS expanders, fills, then an exchange? I have read nightmarish stories about expanders becoming infected and causing pain.

I am seriously beginning to think that I should just forego reconstruction altogether. All the options (which for me are limited) sound too complicated and generally overwhelming. I guess it's just not physically possible to go straight to silicone after mastectomy? I am begining to consider all sorts of things now...

TIA!

Dawn

 

[snappy]

Have you been to the site of Laura's friend Sue, facingourrisk.org? I lurked there a bit when I was pondering delayed reconstruction.

There are some doctors who do implants in a method called one step alloderm. I don't know much about it but I believe there were doctors in New York doing these.

There were many posts about it, mostly positive.

The descriptions of all the flaps scared me. I even started to watch one video, had to stop. . . I could not go there.

The recovery is drawn out for any flap. Most get more than one surgery.
I was lucky, only had general for the mastectomy in 2004, then once for the flap in 2006. My nipple he did with just a local.

The pain was from the donor site as my chest area was numb. Not the numb when you cut off circulation on your leg when sitting too long in an awkward position, it is not pins and needles for me at least, I just have no feeling. It is something you adjust to over time due to the nerves being cut during mastectomy.

REconstsruction is a big step. What I got out of my research on it was that most PS's think you get a better cosmetic result with immediate as the surgeon will leave more skin and the scars can be hidden a bit better.

My personal stance was that doing it later was better for ME. I knew it would be difficult and there could be complications. I knew that no reconstruction was a viable option. But several doctors (the surgeon who follows me and my GYN) encouraged me (not badgered me). And dealing with the prothesis was difficult. I like to work in the yard, used to swim a lot (before work when I had time) and the prothesis felt like an albatross. Keep in mind I live in south Louisiana, very hot in humid from May to November. also my prothesis was a big mama. . . size 9 which in the prothesis world, trust me, is a whopper. Several of the PS's I talked to said some of their patients that were happiest were the delayed ones since they were very motivated, especially ones that were like me and needed reduction of the healthy breast.

I think the thing that tipped the scale towards reconstruction for me was that I was so very lopsided. I was concave on the surgery size and very, um, endowed on the other. A wonderful benefit was the reduction on the healthy side. It is vastly improved.

I would do it again in a heartbeat. But. . . I had a very good experience, while painful, no complications, a very attentive, expert, but down to earth doc (no Dr God for me), and his nurses were top of the line.

The doc came so highly recommended from nurses (not his) who worked with him in the hospital, I knew I was in good hands. He even goes to my church, his daughters in the same grammer school with my youngest. The situation made me feel comfortable.

I am not suggesting delayed is right for you. . . it simply worked for me. I did not really have a choice as my surgeon wanted me to do delayed. I really believe he though he would find a larger invasive mass or evidence of spread in the nodes. Technically, I could have done immediate. But I am very at peace with the whole thing.

I find I never second guess that aspect. I do think sometimes about whether the pathologist was top notch and I really was as lucky as the report indicated, only the one very small area of invasive and clear nodes.

Once I settled on a surgeon, I never looked back. I knew I was in capable hands. I had multi focal DCIS so I did not have to face the mastectomy vs lumpectomy decision. Mastectomy was the standard of care.

I think you will feel better once that happens. I sure hope so. I do feel like it is good to go through all the research now though. Don't go in uninformed.

Personally, I don't like surprises. I reasearch on the front end, make my decision, then don't look back. I do my worrying on the front end, although I save the real worrying for my kiddos. Lucky little rats. LOL!

 

[snappy]

Speaking of reconstuction there is a Y Me teleconference on Wednesday.

teleconference is this Wednesday.

Phone number: 1-800-593-9038

Password: YME21340

"Breast Reconstruction Options"
Wednesday, March 19, 2008
7 p.m. CT (8 p.m. ET, 6 p.m. MT, 5 p.m. PT)

Speaker: Aldona J. Spiegel, M.D.
The Center for Breast Restoration
The Methodist Hospital
Houston, Tex.

 

[lookingforward]

I am having silicone implant put in when my radiation is done. I currently have an expander in (was put in during my original surgery) and have had not problems with it at all except for some pain during recovery when I flipped over onto that side during sleep/rest, etc. Now that I am fully healed it is not a problem. I have about 300 ccs of fluid in my expander and he will finish the expansion in June/July. I can't wait to get rid of it and be done, but my plastic won't rush it after radiation. He wants the best possible outcome. I have seen many of his "work" and they look amazing, real, etc. Not to be too personal but even the nipples look real, you get to choose the color, size, etc and then everything is matched..he uses real skin and not just a tattoo and other than having no sensation they look real.

I have seen flaps and they look amazing too, just different than implants. But equally as nice.

I am so glad you got your surgery date DeeCeeSW!

#1Disfan...YEA! I feel your excitement because I am only 33 days away from my last chemo.....................YAHOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!

My counts were down so low this week that I am having to avoid crowds,e tc. But it will be worth it when its said and done.

Hugs and prayers to all in treatment or awaiting tests.

 

[snappy]

I am having silicone implant put in when my radiation is done. I currently have an expander in (was put in during my original surgery) and have had not problems with it at all except for some pain during recovery when I flipped over onto that side during sleep/rest, etc. Now that I am fully healed it is not a problem. I have about 300 ccs of fluid in my expander and he will finish the expansion in June/July. I can't wait to get rid of it and be done, but my plastic won't rush it after radiation. He wants the best possible outcome. I have seen many of his "work" and they look amazing, real, etc. Not to be too personal but even the nipples look real, you get to choose the color, size, etc and then everything is matched..he uses real skin and not just a tattoo and other than having no sensation they look real.

I have seen flaps and they look amazing too, just different than implants. But equally as nice.

I am so glad you got your surgery date DeeCeeSW!

#1Disfan...YEA! I feel your excitement because I am only 33 days away from my last chemo.....................YAHOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!

My counts were down so low this week that I am having to avoid crowds,e tc. But it will be worth it when its said and done.

Hugs and prayers to all in treatment or awaiting tests.

You go girl!!!

 

[DeeCeeSW]

GAGWTA!

Yay, Maureen!!!!!!!!

OK, so now I've been looking into this Alloderm...does anyone know anything about "one-step surgery?" I am thinking if PS all of a sudden tells me that I do not have enough tissue to do the bilateral LAT flap that I will ask about Alloderm (he didn't do any measuring during our first visit, only examined the area). I realize I will need to consider implants if LAT is not possible, and from the little I've read, it looks like Alloderm is an alternative to having expanders. This is appealing to me.

TIA!
Dawn

 

[snappy]

Sorry, all I know was what I gleaned from the facingourrisk.org site. Did you read it about it over there?