Dis Breast Cancer Survivors Part IV - GAGWTA

[annrae]

I know I have not been around for some time now. Life just seems to be moving along so quickly and there are not enough hours in the day. I do read your posts though so I'm aware of what is happening in your lives. We went to Disney in May with our entire family and had a wonderful time and in September we are going on a Disney 4 day cruise and then will spend 4 days at Disney.

Seven years ago I was diagnosed with DCIS and had radiation. Two weeks ago I had a mammogram done with a 3D mammography machine, an ultra-sound and a biopsy all in the same day and I have invasive mamary carcinoma in the same breast that I had the lumpectomy done so I will have a mastectomy done this time. My appt. with my surgeon is June 18 and then hopefully the surgery date will be determined. Because I am older I am having difficulty making a decision as to whether I should have reconstruction done or wear a prosthesis. The radiologist said I may not need to have chemo which was a bit of good news. The left breast is clear but it has been suggested that I might consider a double mastectomy. I will see what the surgeon has to say. Does anyone have an opinion on not having reconstruction as the same time as the mastectomy is done and also having a double whammy.

I felt the need to write to all of you as you are a wonderful, strong, informed group of women and I'm hoping I can draw some strength from you. I feel like I've been punched in the stomach most of the time but I know how lucky I am that they found it as it is deep in the breast.

Cheryl, I was sorry to hear about your numbers. Hang in there.

Laurie - your pictures are beautiful and I loved seeing your DD and her friends.

I know I will be in touch again. No one ever said life was easy but with faith, hope and the strength of my family and all of you, I will get through this.

Thanks much for reading this "downbeat" post.

Barbara

 

[luvmarypoppins]

Barbara - so very sorry to hear that you have to go through this all over again. It stinks for sure!!

You have always been so support and encouraging to me and the other ladies as well.

There is a lot on your plate right now to consider and decide upon once you gather all your information to make an informed decision.

I am sure others will chime in and give you some great advice here.

Sorry I cant be of much help, other than to offer you my prayers (just said one for you now sista) and good thoughts and some virtual hugs.

I know your family will be a great help and support to you too during this time.

Please take care of yourself and keep us updated.

 

[snappy]

Barbara, I am sorry to hear this news, but glad you came here to update us. It is a blessing you had a great visit with the entire family in May. Did not remember you were going but I bet you were gone before we arrived on May 28th. Have wanted to meet you for years. Perhaps in September? I will email you.

I would not recommend having a double mastectomy and reconstruction at the same time. That is a lot of surgery at one time, in my opinion, especially if it is tissue flaps. Have they given you different options on reconstruction?

Can you share why they are suggesting the double? It would seem like that would be recommended if the risk of recurrence in the other breast is elevated for some reason. I would ask the surgeon for the risk factors of recurrence in the other breast based on the info from the pathology report from the diagnostic testing.

Protheses have improved considerably since I got mine in 2004. My mom just got a very nice small light one. Having said that, I am very happy I did the free tram flap reconstruction, even though it meant such a large incision on my abdomen. My other breast was large and the prothesis I had was very heavy and especially uncomfortable in the heat and humidity of the summer.

However, the doctor did not recommend a double. That changes the decision tree considerably.

Sorry that you are going through this

I will be in touch.

Laurie

 

[Feralpeg]

Barbara, I'm so sorry you're facing this again. I did have reconstruction after my mastectomy 30 years ago. I had my implants (I had one put in my remaining breast to even things out) for over 20 years before one ruptured. Because they were silicone, it was a bit messy to remove. The doctor had a hard time cleaning out all of the silicone.

At that time, he recommended a couple of different types of reconstruction, but I declined. I asked him if he could guarantee that I would not have another rupture in the future. He told me no. All implants have a lifespan. Most of them only last about 20 years. I decided that I didn't want to face the prospect of another rupture.

As it turned out, my current cancer came back in the scar area of my mastectomy. My oncologist told me that the rupture of my implant and its removal probably saved my life. As it was, the cancer came to the surface of the scar. If I had still had the implant, I might not have found it until too late.

Of course, every one's situation is different. I'm 62 and have no desire to have any type of reconstruction. Once I finish my chemo and radiation, I plan on asking my oncologist if he thinks it would be a good idea to have my other breast removed. While I currently have no cancer in that breast, I'd like to hedge my bet by having less breast tissue. I'm hoping that since I've just had breast cancer and subsequent treatment, that the insurance company will cover the cost of the removal of my remaining breast.

It is a hard decision to make. My thoughts are with you!

 

[CherylDan]

Barbara, so sorry to hear you are having to deal with this again. I didn't have reconstruction so I'm afraid I can't be of any help with that. I didn't even bother with a prostheses, but I am very small breasted so I don't mind being a bit lopsided, so to speak. Hopefully when you meet with your surgeon he/she will be able help you come to a decission you are comfortable with.

Laurie, love the pictures....your DD is just too cute!

I have a million things to do before we leave on Friday....tomorrow will be a very busy day! I just checked the weather for San Diego next week - 68-70 and sunny. Ahhhhhh.....perfection! And a heck of a lot better than the 95 and humid we had here today.

I hope you all have a good week. GAGWTA!!

 

[annrae]

Thank you all for being so kind and responding to my post on the Disboards and also for my personal messages.

I am doing a lot of thinking these days and I'm leaning toward not having any reconstruction and using a prosthesis although I understand they are not very comfortable. I will know more when I see the surgeon on Tuesday. Perhaps my memory is failing me, but this reoccurence really hit me harder than the DCIS diagnosis I received 7 years ago. I was so positive (maybe too positive) that I would always be fine after the lumpectomy and radiation.

Your words of encouragement make me feel so much better - So many of you are fighting a battle which is much worse and I appreciate your taking time out for me.

Hugs to all of you and have a good weekend.

Barbara

 

[snappy]

Have a wonderful trip, Cheryl. I wish I had some of that type of weather to look forward to. It is unbearably hot here already.

Upside is the the fruits and veggies are plentiful and very delis.

 

[snappy]

Thank you all for being so kind and responding to my post on the Disboards and also for my personal messages.

I am doing a lot of thinking these days and I'm leaning toward not having any reconstruction and using a prosthesis although I understand they are not very comfortable. I will know more when I see the surgeon on Tuesday. Perhaps my memory is failing me, but this reoccurence really hit me harder than the DCIS diagnosis I received 7 years ago. I was so positive (maybe too positive) that I would always be fine after the lumpectomy and radiation.

Your words of encouragement make me feel so much better - So many of you are fighting a battle which is much worse and I appreciate your taking time out for me.

Hugs to all of you and have a good weekend.

Barbara

It is a kick in the pants to gear up for facing this again, Barbara. You have a lot of folks on your side though, your entire family, and all of us here.

The support here is without a doubt the best.

I had to smile after reading Cheryl's post above about not minding being lopsided. I remember leaving my prothesis on the bathroom counter at home one morning when a friend picked me up to go to DD17's soccer game. I realized it after we drove up and were getting our portable chairs out of my friend's van. I was a bit self-conscious at first, then I finally said, what the heck. It was cold anyway and I had a bulky sweatshirt on. I think my friend and I were the only ones who even realized I was missing something.

I have a funny prothesis/gardening story. My prothesis was on the large side, a 9 which in prothesis world means big kahuna time. I really thought it was too large and garnered too much attention. I ended up using a hand me down prothesis that my sister gave me that had belonged to her mother-in-law. It was half the size and a lot lighter. It was easy to just stick quickly in any old bra, so I never bothered with the special bras with the pockets.

That was all fine and good and convenient, but there was only one problem, when I was out in the garden planting, pulling weeds or whatever, the nice small prothesis had a tendency to plop right out when I bent down, since it wasn't secured. The first time it happened I looked down both sides of the street to see if anyone had noticed. I could imagine that it might freak someone out to see that thing come flying out. Luckily I had no witnesses, so I whipped that baby back into place, and never worried about it again when it flew out afterwards.

Too many other things to worry about I guess.

Hope that wasn't too graphic of an image for everyone, lol.

GAGWTA!

 

[Pea-n-Me]

Barbara

GAGWTA

 

[CherylDan]

Laurie.... thanks for the giggles!

Just about all packed, a few things to finish up in the morning before we leave. My mom will be keeping the doggies, her "grand doggies" as she calls them. I'm so glad that we are able to leave them with her.

GAGWTA!!

 

[luvmarypoppins]

Laurie - loved your story!

Cheryl - have a great trip. Always love seeing your pictures.

Peg - how is your childrens book coming a long?

Finally some sun today. More rain next week. I go to the onc. on the 20th.

Ds1 is in a wedding tomm. Hope I get to see him dressed up. The reception is in a barn??

The ds are going to a bbq later. Yeah, peace and quiet.

Well I am back to preparing to teach the vbs stuff. I am going to work on decoration ideas today.

GAGWTA

 

[Dancind]

Hi Ladies, haven't been on the DIS much lately. Nice to come here and see the photos of the great trips and smiling faces.

Barbara, here's my two cents. i had a single mastectomy without reconstruction and it is a bit of trouble, mostly because it is difficult for me to wear a bra. My surgery was not great, and I wound up with torso lymphedema on my right side. There is a ditch right where the top edge of a bra hits, under that arm. The good news is, I still have one "good" side. Which I might not have had I opted for a double mastectomy. It's a really tough decision, I know. Sorry you have to make it.

Laurie, I hope that young fellow learned a lesson. You do NOT look like a grandmother to those girls. I have a friend, 15 years younger. When we go out to lunch etc. someone always asks if I am her mother. I guess I should be flattered, she is very pretty.

I asked DH about posting the photos from our CA trip on his Smugmug page. He said he doesn't like to edit photos anymore, just take them. ??? So I asked he do it as a favor to me. Maybe when he gets back from a free trip to Bonaire next week, he is leading a scuba trip. Must be nice to vacation every four weeks.

DD and I are heading to Santa Fe for a night this weekend. We're going to eat at a scrumptious French restaurant and go to the Farmer's market. So I guess that's my vacation!

 

[annrae]

Laurie, Thank you so very much for my huge giggle for the day! I can just imagine something like that happening to me also.

Thank you for the hugs, Linda and for the info you sent me Dancind, Maryann for your kind words - you are indeed all so special

Barbara

 

[NHAnn]

Hello ladies....I have been scarce from the DIS for some time but you are never far from my thoughts.

Had to post when I saw (annrae) Barbara's news. So sorry you are going through this again. It seems the technology and standards of care change so very rapidly. Take you time to think things through. I still recall the advice and support that Laurabelle and Pea-n-me and snappy shared with me 8 years ago....to research your OWN situation and then just go with your gut. You can't look back, just do what you feel in your heart is best for you with the info you have at any given moment. My thoughts and prayers are with you.

Laurie....love the pictures.....you and DD are both just beautiful!!

GAGWTA!!!

 

[PatsMom]

Annrae, sorry to hear that you are facing cancer for a second time. Without a doubt you have gotten some good advice and will keep getting good support from the ladies on this thread. They are the best!

I have a friend who opted for a mastectomy (single) and no reconstruction. She gets her medical insurance partly through her work and partly through the VA so other plans might be different but she gets a new prosthesis periodically as they dry out and become brittle. She got some real chuckles when she had to apply to receive one early because the dog ate her prosthesis! She had just gotten Dusty and she was in the chewing everything stage! My friend left her alone in her bedroom for a little while and that was all it took. Dusty had a great time chewing up the prosthesis! There was no wearing it. Fortunately my friend still had an old one so that she didn't have to go around "lopsided" as she put it.

 

[Feralpeg]

Happy Father's Day, ladies! Hope you're all enjoying the day!

I'm spending a quiet day at home with Kendall. It's very hot out and I don't handle the heat well right now. Working a little on one of my stories. Waiting anxiously for the illustrator to finish on one of my picture books. All in all, things are good!

 

[luvmarypoppins]

Diana - you dh sure goes to some great places I know my one ds would love to tag along. He is a water rat being a lifeguard. He wants to scuba and surf too.

Peg - I was reading your driving thread. That whole situation was frustrating to say the least!

Well I spent 3 hours with ds3 today decorating our room. I come home and ds2 says, oh there is a message for you on the phone etc.

Well its none other than my wonderful helper. She goes and tells me she ordered all these expensive decorations from the company. because she didnt hear from me, hmm couldnt we discuss this? I already had everything. She saw what we did last year. I never order expensive stuff. I go to the dollar store etc.

So she is not willing to budge and insists on keeping this stuff and making it work etc.

My poor ds spent so much time today and when he heard he was mad too. We both wanted her to donate it to another room or for the whole place to enjoy etc. she refuses. I guess its her personality and her money.

Now I feel like we will be the show off room and i have never been like that etc.
So frustrating, but I want to work things out. I dont want to take down all our hard work. I will let her see what we did and how she wants to work around it. I will let her tear it down if need be but I hope she sees all the time and effort we put in and not wasted $25 on some cardboard thing like she did etc.

Last year I let her buy all the good bags for the kids and she was happy doing it. That is what I was going to tell her to do again etc.

She refused to cancel the order etc. Oh well. Such is life. I am sure that are more important things.

I am already getting butterflies in my stomach about going to the onc. thurs. I know she isnt going to do anything, but just going in that hosp. brings up everything etc. Anyone else feel like that?

GAGWTA

 

[PatsMom]

Maryanne - I will be thinking of you at the onc Thursday. Hope it all goes well. And you will work out something about your room. Stinks when you don't get cooperation!

 

[snappy]

Patsmom, loved your dog story. Our younger dog got ahold of DS24's eyeglasses over the weekend and they are now in a whole new style, one that does not fit very well on his face, lol.

Seems like glasses and protheses would not be very appetizing, right?

MaryAnn, sorry your helper is being so such a diva.I don't understand how she could think a pre fab cardboard thing is very creative? Is she young? Sounds like an immature person. I hope your DS is not too upset.

I understand how you feel about your upcoming doctor appointment. i am a bit anxious right now, but not really for myself. It just hits close to home. One of my co workers who I am close too was treated by the same breast surgeon (both of us had mastectomies during the May-June time frame in 2004). Now something has showed upon diagnostic testing int he other breast. She had a sonogram, then a mammogram, then another sonogram on may 20th, then a steroetactic core needle biopsy a few days later. The results from the biopsy were delayed a ridiculously long time, not sent to the surgeon. She finally got the results and it looks suspicious. She goes to see "our" surgeon tomorrow. I read her path report. Nothing definitive but it says she probably needs the whole area excised to know for sure. She is already thinking of doing a mastectomy with implants and having a redo reconstruction on the side that was treated previously as she had a tram flap and opted for no impact. The area just collapsed over the 9 year period.

With breast cancer it seems every case is different as well as the aftermath. You just never know.

Hard for me to concentrate today and I had a pile of work to do. Actually being busy is good.

GAGWTA!

 

[luvmarypoppins]

Pats Mom - I at your dog story too.

Well I am back fro the onc. She was happy with my blood tests. She thinks the nodule in my lung is not thy ca because its decreasing in size.

She said I dont need the horrible diet and scan next year. Just the blood tests and sono as that is the new protocol.

She said she will only worry if my numbers go up.

So I dont have to see her until next year. She agrees with the endos 6 month blood tests and sonograms.

She said I should see a pulmonalogist for the lung issues/breathing and probably the cardiologist too. Oh how wonderful. I will add that to my list of things to do.

Did I say how my sweet helper saw the room and said she liked it. Ds was relieved for now that she didnt say tear it down etc.

GAGWTA.