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alabama_survivor

Hello everyone.  I have been lurking on this forum for a couple of days now, and have found some really good information and support. 

I am 54 years old, and was diagnosed in June of this year. I have stage 3C triple negative on the left side, and IDCIS on the right side. I have complete 4 dd A/C treatment, and 9 of 12 weekly taxol treatments.  As of November 11, my tumor had shrunk from nearly 7 cm to closer to 2. Following chemo, I will be having a bilateral mastectomy in January,  and had planned to have immediate reconstruction with expanders,  but following my initial visit with the radiation oncologist on Tuesday, I am re-thinking the reconstruction. 

I hae very mixed feelings about being in surgery for the 5 or 6 hours that the surgery will take. I am about 40 or 50 lbs above my Iideal weight, have high blood pressure,  mild diabetes,  and super severe sleep apnea. I also have concerns about size if I can lose th excess weight once this Iis over. But I don't want to lose my window, since I'm not really a good candidate for a tram flap.  Even if I was, I'm not sure radiatiod want to do that.  At any rate, the breast surgeon, and medical oncologist both indicated that I would be starting radiation about a month after surgery.  When I saw the plastic surgeon,  he told me that he would want to fully inflate the expanders prior to radiation because radiated skin doesn't expand well,  and that it would take a couple of months.  However the radiation oncologist wants to see me as soon after surgery as my drains are out, and he wants to start treatment about a month after surgery. He also said that once he begins the planning,  I wouldn't be able to have any more fills. I've decided that with a stage 3C cancer, I need to choose radiation over reconstruction.  I see  the plastic surgeon on Thursday.  Just wanted to see if anyone else had to decide between reconstruction and radiation. 

 

 

desertgirl947

Tough to know what to do.  I

Tough to know what to do.  I was 57 when I dealt with the news I had cancer.  I am a IIIA person.  I decided I did not want reconstruction.....  I really did not want more surgery....  I know of instances when things did not go right .....  I did not want to prolong my recovery.  I wanted to get on with life.

I had a bilateral mastectomy.  I had chemo.  I had radiation.  I am on tamoxifen.

Two years in remission and I have not regretted my choices.

I hope you will soon have peace about a decision.

ee

alabama_survivor

Thanks.

Thank you for the insight. Even though I've nearly finished chemo,  I feel like I'm still fairly new at this. I am fortunate that we have one of the top cancer centers in the country,  so I've really been comfortable trusting what the BS and MO have told me to do. I also really like the PS, but he just doesn't seem to be on the same time table as the other 3 doctors.  I've made alist of concerns and questions,  but I think once I get those answered,  it will we fairly easy to make a decision. 

New Flower

alabama_survivor said:

Thanks.

Thank you for the insight. Even though I've nearly finished chemo,  I feel like I'm still fairly new at this. I am fortunate that we have one of the top cancer centers in the country,  so I've really been comfortable trusting what the BS and MO have told me to do. I also really like the PS, but he just doesn't seem to be on the same time table as the other 3 doctors.  I've made alist of concerns and questions,  but I think once I get those answered,  it will we fairly easy to make a decision. 

Welcome

welcome to the board

i was diagnosed with stage 3C in 2008. I had mastectomy first then Chemo and radiation. I was staging after mastectomy with 11 positive nodes and radiation was a must for me. I have had Flap immediately after mastectomy so radiation was done 4 months after

you can always do radiation 6 months later

good luck

GlowMore

Sorry you are here...and Mean that in the Best Way

I'm Triple Negative IIIA and I only had a Lumpectomy so did not have the same decisions to make.   Just wanted to say we are all here for you and send you Love and Encouragement as you deal with this.  I have heard good and bad stories from many women about the reconstruction ...but this is a highly personal decision and I know you will make the right one for YOU.   Hope and Prayers.  Glo

alabama_survivor

New Flower said:

Welcome

welcome to the board

i was diagnosed with stage 3C in 2008. I had mastectomy first then Chemo and radiation. I was staging after mastectomy with 11 positive nodes and radiation was a must for me. I have had Flap immediately after mastectomy so radiation was done 4 months after

you can always do radiation 6 months later

good luck

I did chemo first because of

I did chemo first because of the size of the tumor. I really have not been given the option of waiting between any phase of my treatment. I was told from the beginning that I would be treated very aggressively because of two tiny spots on my lung that are too small to biopsy.  They could be nodules from something in the soil that many people in this part of the country have (I'm in Alabama). The MO and surgeon agreed to proceed as if it was not cancer, as they didn't want to delay my treatment while they investigated further. Also, my brother had coloon cancer a year ago--we thought he had clear margins and lymph nodes--and about a month ago he found out that it has metastasized to his pancreas and liver.  This makes me want to be even more diligent with my own treatment.

Thanks for the input.  I see from your number of posts that you're on here a lot. I look forward to getting to know you. 

alabama_survivor

GlowMore said:

Sorry you are here...and Mean that in the Best Way

I'm Triple Negative IIIA and I only had a Lumpectomy so did not have the same decisions to make.   Just wanted to say we are all here for you and send you Love and Encouragement as you deal with this.  I have heard good and bad stories from many women about the reconstruction ...but this is a highly personal decision and I know you will make the right one for YOU.   Hope and Prayers.  Glo

Thank you for the

Thank you for the encouragement.  I know you are on here a lot and look forward to getting to know you.  I do think my answer will be clear once I talk to the plastic surgeon. 

New Flower

New Flower said:

Welcome

welcome to the board

i was diagnosed with stage 3C in 2008. I had mastectomy first then Chemo and radiation. I was staging after mastectomy with 11 positive nodes and radiation was a must for me. I have had Flap immediately after mastectomy so radiation was done 4 months after

you can always do radiation 6 months later

good luck

Sorry for typo

Sorry for typo. Radiation should be done between 4 to 6 weeks after Chemo. Reconstruction can be done 6  months after radiation or later.

Best to you

alabama_survivor

New Flower said:

Sorry for typo

Sorry for typo. Radiation should be done between 4 to 6 weeks after Chemo. Reconstruction can be done 6  months after radiation or later.

Best to you

Thanks for the clarification.

Thanks for the clarification.  After finding out what all is involved,  I'm really not interested in the flap surgery.  I've already had two abdominal surgeries and don't want another. The expander surgery sounded ideal at fifst,  but as I said I am vefy apprehensive about being on the table that long, and the RO really doesn't want to allow enough time to inflate them  before treatment begins. I really didn't want to deal with prostheses but that may be the way to go.

VickiSam

alabama_survivor said:

Thank you for the

Thank you for the encouragement.  I know you are on here a lot and look forward to getting to know you.  I do think my answer will be clear once I talk to the plastic surgeon. 

Hello There . . alabama !

Just checking in on you ==  Please let us know how you are doing after you visit with your Plastic Surgeon ..

 

We are here 24 hours a day // 7 days a week ..

 

Vicki Sam

alabama_survivor

VickiSam said:

Hello There . . alabama !

Just checking in on you ==  Please let us know how you are doing after you visit with your Plastic Surgeon ..

 

We are here 24 hours a day // 7 days a week ..

 

Vicki Sam

Thanks Vicki.  My appointment

Thanks Vicki.  My appointment with the plastic surgeon was changed to tomorrow.  I am leaning towards not doing the reconstruction.  I know that expanders don't work as well after radiation,  but as long as it's still on the table,  I will definitely put it off for a year or two.  My husband made it clear that it is my decision, butwhen I asked him point blank,  he told me if it were up to him, he wouldn't want me to do. 12 years ago I had cervical cancer. When I had my hysterectomy,  everything was pointing to precancer, but when they did the pathology it showed micro invasion,  so they went back in and did margins and lymph nodes.  I didn't have to do chemo and radiation,  but I did throw a massive blood clot in my lung in the recovery room. In the hospital,  I had a crisis three nights in a row. Me having any kind of surgery scares him to death. Scares me too. I keep thinking about the amount of trauma my body will have gone through between chemo, the bilateral mastectomy,  and radiation.  I'm just not sure I want to add more.  I do plan to keep my appointment,  though because I do want to get a couple of questions answered. 

disneyfan2008

welcome..YOU have found a

welcome..YOU have found a great place for advice or to vent...

 

 

alabama_survivor

alabama_survivor said:

Thanks Vicki.  My appointment

Thanks Vicki.  My appointment with the plastic surgeon was changed to tomorrow.  I am leaning towards not doing the reconstruction.  I know that expanders don't work as well after radiation,  but as long as it's still on the table,  I will definitely put it off for a year or two.  My husband made it clear that it is my decision, butwhen I asked him point blank,  he told me if it were up to him, he wouldn't want me to do. 12 years ago I had cervical cancer. When I had my hysterectomy,  everything was pointing to precancer, but when they did the pathology it showed micro invasion,  so they went back in and did margins and lymph nodes.  I didn't have to do chemo and radiation,  but I did throw a massive blood clot in my lung in the recovery room. In the hospital,  I had a crisis three nights in a row. Me having any kind of surgery scares him to death. Scares me too. I keep thinking about the amount of trauma my body will have gone through between chemo, the bilateral mastectomy,  and radiation.  I'm just not sure I want to add more.  I do plan to keep my appointment,  though because I do want to get a couple of questions answered. 

I saw the plastic surgeon

I saw the plastic surgeon today,  and I have opted not to do the immediate reconstruction. We can do one of the flap procedures later, but I will probably not do anything.  The surgeon did say that I am higher risk than most of his cancer patients,  and he thought it was a good decision. 

desertgirl947

alabama_survivor said:

I saw the plastic surgeon

I saw the plastic surgeon today,  and I have opted not to do the immediate reconstruction. We can do one of the flap procedures later, but I will probably not do anything.  The surgeon did say that I am higher risk than most of his cancer patients,  and he thought it was a good decision. 

It's good to read that you

It's good to read that you believe you have made the right decision.

button2

alabama_survivor said:

I saw the plastic surgeon

I saw the plastic surgeon today,  and I have opted not to do the immediate reconstruction. We can do one of the flap procedures later, but I will probably not do anything.  The surgeon did say that I am higher risk than most of his cancer patients,  and he thought it was a good decision. 

Good for you Alabama

I chose to forgo reconstruction too. There were just so many reasons not to. I just wanted to let you know that I have not regretted my decision 2 years down the line. My husband is completely used to me now and the thought of more surgery - ugh - no way! I'm too happy and busy for that right now. Peace and joy this Christmas season, Anna

alabama_survivor

button2 said:

Good for you Alabama

I chose to forgo reconstruction too. There were just so many reasons not to. I just wanted to let you know that I have not regretted my decision 2 years down the line. My husband is completely used to me now and the thought of more surgery - ugh - no way! I'm too happy and busy for that right now. Peace and joy this Christmas season, Anna

Thanks so much for saying

Thanks so much for saying that, Anna. I told the plastic surgeon that the main reason I wanted the surgery was because I didn't want to deal with prostheses.  When I started listing all my concerns that's just not a good enough reason to it. Since I was diagnosed,  my sister was diagnosed with rectal cancer, and we just found out that the colon cancer my brother had last October ( they thought they had clear margins and lymph nodes) has metastasized to his pancreas and liver.  There are three of us and all three of us have cancer. Mom is colon cancer survivor,  and Dad had stage 4 liver cancer when he died.  Right now, fighing this beast and getting myself healthy isa lot more important to me than my looks.   Jeanelle

alabama_survivor

desertgirl947 said:

It's good to read that you

It's good to read that you believe you have made the right decision.

Thank you. I do feel really

Thank you. I do feel really good about it, but I do need to figure out what to do about breast forms, and what garments to buy to wear immediately after surgery and during radiation.  Jeanelle

GlowMore

alabama_survivor said:

Thanks so much for saying

Thanks so much for saying that, Anna. I told the plastic surgeon that the main reason I wanted the surgery was because I didn't want to deal with prostheses.  When I started listing all my concerns that's just not a good enough reason to it. Since I was diagnosed,  my sister was diagnosed with rectal cancer, and we just found out that the colon cancer my brother had last October ( they thought they had clear margins and lymph nodes) has metastasized to his pancreas and liver.  There are three of us and all three of us have cancer. Mom is colon cancer survivor,  and Dad had stage 4 liver cancer when he died.  Right now, fighing this beast and getting myself healthy isa lot more important to me than my looks.   Jeanelle

Happy

that you made this decision because you are absolutely right....Lot more to do in this BATTLE than to worry about a thing like looks........... Prayers for all good healing..........

VickiSam

disneyfan2008 said:

welcome..YOU have found a

welcome..YOU have found a great place for advice or to vent...

 

 

alabama == How is it going ??

Just checking in on you =  Please let us know when time permits ---

 

Vicki Sam

alabama_survivor

VickiSam said:

alabama == How is it going ??

Just checking in on you =  Please let us know when time permits ---

 

Vicki Sam

I'm here. Thanks for checking

I'm here. Thanks for checking on me. I finished chemo Dec 15--4 dd biweekly A/C treatments followed by 12 weekly Taxol. I did get a two week break after week 7 of taxol because of severe rash, and low blood counts.  I'm still weak, and following those last five treatments, I had to do another steroid pack because my rash came back. Between the weakness and the neuropathy (lots of tingling in my hands and feet), I bought and have been using a cane. I will be havivg a double mastectomy with Sentinel node dissection on Jan 15. Then a Month after that will begin 28 radiation treatments. Jeanelle

GlowMore

alabama_survivor said:

I'm here. Thanks for checking

I'm here. Thanks for checking on me. I finished chemo Dec 15--4 dd biweekly A/C treatments followed by 12 weekly Taxol. I did get a two week break after week 7 of taxol because of severe rash, and low blood counts.  I'm still weak, and following those last five treatments, I had to do another steroid pack because my rash came back. Between the weakness and the neuropathy (lots of tingling in my hands and feet), I bought and have been using a cane. I will be havivg a double mastectomy with Sentinel node dissection on Jan 15. Then a Month after that will begin 28 radiation treatments. Jeanelle

We are with YOU....

We are with you Jeanette............ and just think about this.....one day you can put that cane away like I did     But I do remember having to use one.... sending you hugs and prayers....  glo