newbie w. Qs

gracegotmehere · May 2015

Hello all. I am one of the newer members of the BC club-- found out 2.5 weeks ago. My first post here-- thank you for welcoming me! Found out I was BRCA-2 positive 3 months ago. MRI screening found cancer that recent mammography missed, a very small (low grade, hormone + HER2 neg) tumor so I have many reasons to be grateful.

That being said...

I am scared. Scheduled for BMx next week, will find out about chemo then, and will not do reconstruction now, might never. And I have questions.

1. Waiting stinks, and I keep wondering if it is really okay to wait this long to get this cancer out of me? The appointments have followed pretty promptly (MRI, ultrasound biopsy did not work, MRI biopsy, meet with this surgeon then that one, schedule the surgery...) All in all it will be 7 weeks from MRI to surgery. Of course there is nothing I can do about it. Still it worries me-- I am told that all those words (above) are "good words" when it comes to cancer (#irony) but still it is an invasive cancer. I am so afraid it has gone other places. I guess I'll find out soon. I told my husband, I wonder how soon after anesthesia wears off post-surgery before I ask "Was there cancer in the sentinel node????!!" At this point those words are every other rational thought of mine.

2. So, no reconstruction. It seems right for me for various reasons, though I'm not 100% sure. Any help here?

I'm in my early 40's with an active athletic family and I just want to heal asap and take the route with least chance of complications. I'm not really in to the idea of maintenance surgery down the road for my breasts either. Sounds like a huge adjustment one way or the other-- breast forms sound about as new and weird as implants/flap with no/little sensation and permanently perky breasts IMHO. I'm a pretty confident person-- not happy to lose my breasts but read somewhere it is a fair trade for a second chance at life. I think that idea can help guide me through.

3. Okay-- I'll have a flat chest. Can it just look healthy, certainly strange and different at first but not concave or frightening? (I thought boy chest sounded okay, but then realized-- no nipples-- makes that "okay" less certain) I asked why you can't have a plastic surgeon if you're not doing recon-- just to achieve the healthiest looking outcome. "Maybe later," I was told. Okay...

Thanks for your help.

Would love to hear from brave new friends offering guidance.

morgamed · May 2015

Take a deep breath and relax

You are in good hands here with all the pink sisters. I let my cancer go for two years. Yes I knew something was there but was to hard headed to go and do anything about it. Thank goodness with my BM there were nothing in the nodes. I got lucky..real lucky.

I am flat chested and loving every day of it. Everyone has their own feelings and how they want to look and I really didn't care. I was cancer free from that awful alien.

I really can say anything about chemo or radiation becasue I didn't have to go through that. I can say it took two days for the hospital to get the results back from the nodes they took..(21 of them) so there will be a little more waiting.

Please keep us updated and we will do our best to support you..

TraciInLA · May 2015

Somewhat similar situation

I was diagnosed with bilateral breast cancer 6 years ago, when I was 40 -- I tested negative for BRCA1 and 2, and my tumors were so tiny (each less then 2 mm), I elected to have bilateral lumpectomies, followed by chemo and radiation.

2 years ago, as part of a research study, I tested positive for the PALB2 genetic mutation. PALB2 stands for "Partner and Localizer of BRCA2," and is very new -- there's very little data on it yet, but their best guess right now is that it may act similarly to BRCA2.

After consulting with a geneticist, genetic counselor, and every one of my doctors, I chose to have a prophylactic bilateral mastectomy this past January. I had no interest in reconstruction, and I just go flat -- to be honest, I'm really kind of loving not having to fuss with bras, and I don't do anything to hide the fact that I'm flat. I've found I really don't care if I look like I don't have breasts -- so what? I'm proud of being a survivor, and proud of my decision to take charge of my health.

If you do choose not to have reconstruction, just make sure you're working with a surgeon who's 100% on the same page with that choice, and with how you want to look. I also asked my surgeon and his plastic surgeon whether or not the plastic surgeon would be involved, and they agreed there was no need -- but my surgeon chose to do a differently-shaped incision on me, to make sure to get the best possible cosmetic outcome for my body. He knew that was important to me, and completely respected it.

You have to live with the results of your surgery for the rest of your life -- I really encourage you to perhaps have another conversation with your surgeon, to make sure he/she is addressing how you're going to look, and not just "getting the cancer out."

Hope that helps?

Traci

gracegotmehere · May 2015

morgamed said:
Take a deep breath and relax
You are in good hands here with all the pink sisters. I let my cancer go for two years. Yes I knew something was there but was to hard headed to go and do anything about it. Thank goodness with my BM there were nothing in the nodes. I got lucky..real lucky.

I am flat chested and loving every day of it. Everyone has their own feelings and how they want to look and I really didn't care. I was cancer free from that awful alien.

I really can say anything about chemo or radiation becasue I didn't have to go through that. I can say it took two days for the hospital to get the results back from the nodes they took..(21 of them) so there will be a little more waiting.

Please keep us updated and we will do our best to support you..

Thank you! I believe that you

Thank you! I believe that you ARE lucky-- wow. seriously 21 nodes? a friend had 6 taken and she has lymphedema now which limits her significantly-- her dominant hand / arm too, unfortunately. I'm praying one node / biopsy on the spot is all they need for me. Dreaming? I'll let you know!

I started my list yesterday of "what not to say to someone who has cancer." It already has several entries, which is rather sad considering it's been, umm, 19 days. My mother-in-law wins the --pun intended-- "booby prize" for the moment with this lovely comment: "I thought of you when I had my mammogram last week! I was so glad to have a positive outcome."

"Yes, I've always been very glad the times that I've had positive outcomes. And I was sad when I did not have a positive outcome. That is very interesting, isn't it? I wonder if all women feel that way about their positive outcomes and their negative outcomes from mammography?" = what I should have said.

No worries. Her son is the biggest blessing in my life so I will be biting my sarcastic little tongue...

gracegotmehere · May 2015

TraciInLA said:
Somewhat similar situation
I was diagnosed with bilateral breast cancer 6 years ago, when I was 40 -- I tested negative for BRCA1 and 2, and my tumors were so tiny (each less then 2 mm), I elected to have bilateral lumpectomies, followed by chemo and radiation.

2 years ago, as part of a research study, I tested positive for the PALB2 genetic mutation. PALB2 stands for "Partner and Localizer of BRCA2," and is very new -- there's very little data on it yet, but their best guess right now is that it may act similarly to BRCA2.

After consulting with a geneticist, genetic counselor, and every one of my doctors, I chose to have a prophylactic bilateral mastectomy this past January. I had no interest in reconstruction, and I just go flat -- to be honest, I'm really kind of loving not having to fuss with bras, and I don't do anything to hide the fact that I'm flat. I've found I really don't care if I look like I don't have breasts -- so what? I'm proud of being a survivor, and proud of my decision to take charge of my health.

If you do choose not to have reconstruction, just make sure you're working with a surgeon who's 100% on the same page with that choice, and with how you want to look. I also asked my surgeon and his plastic surgeon whether or not the plastic surgeon would be involved, and they agreed there was no need -- but my surgeon chose to do a differently-shaped incision on me, to make sure to get the best possible cosmetic outcome for my body. He knew that was important to me, and completely respected it.

You have to live with the results of your surgery for the rest of your life -- I really encourage you to perhaps have another conversation with your surgeon, to make sure he/she is addressing how you're going to look, and not just "getting the cancer out."

Hope that helps?

Traci

Thanks, Traci- I appreciate

Thanks, Traci- I appreciate your recommendations. I actually have had three chances to discuss this with my surgeon (partly because the first time I saw her I did not know I had cancer-- we were discussing BRCA-2 prophylactic mastectomies) and at other times with her nurse. She understands my wishes and my reasons and is supportive of them, but she did urge me to talk to a PS, which is legit and which I did. I have been told that my incisions will be horizontal. Do tell-- is there something else that is better? This is all new to me.

alabama_survivor · May 2015

I had a BMX and chose no

I had a BMX and chose no reconstruction. I was diagnosed June 26, 2014 with stage 3C triple negative cancer on my left side (my dominant side), and DCIS (noninvasive, stage 0) on the right. I did 5 months of chemo before surgery to try to shrink my nearly 7 cm tumor. The right side, by the way, was noninvasive but widespread through my entire breast. I had my surgery on January 15, 2015. I had planned to do breast forms, and I did wear the puffy forms at first, but about 5 weeks into the radiation, my skin started to break down and become extremely raw and weepy. I actually developed an infection in one of those places, so I've been going "flat". I may or may not get breast forms, but I know I won't wear them all the time.

I did not think the mastectomy recovery was that difficult. The worst part was the drains that I had for nearly 4 weeks. I was never in a lot of pain, and I started feeling really good within a couple of weeks. You will probably have an even easier time than I did because you are younger (I just turned 55 last month), and I was still a little weak from chemo. As far as chemo, I did 4 biweekly dose dense rounds of Adriamycin (Red Devil) and Cytoxin. A/C for short. Then I had 12 weekly Taxol treatments. My biggest fear is that I would spend the whole time throwing up my toenails. At most, I had a few incidents of very mild queeziness that was easily taken care of with the meds I was given. As chemo progressed, I did have some pretty low blood counts, and extreme fatigue. With the Taxol, I had some really low blood counts, and I also developed a rash which delayed treatment for a couple of weeks. Through all of this, I only spent one night in the hospital, and that was the day I had my surgery.

It was tough, but none of it was as bad as I expected it to be.

TraciInLA · May 2015

gracegotmehere said:
Thanks, Traci- I appreciate
Thanks, Traci- I appreciate your recommendations. I actually have had three chances to discuss this with my surgeon (partly because the first time I saw her I did not know I had cancer-- we were discussing BRCA-2 prophylactic mastectomies) and at other times with her nurse. She understands my wishes and my reasons and is supportive of them, but she did urge me to talk to a PS, which is legit and which I did. I have been told that my incisions will be horizontal. Do tell-- is there something else that is better? This is all new to me.

"Dog ears" and my surgeon's tactfulness

Knowing I didn't want reconstruction, my surgeon's big concern was doing his best to avoid the loose skin called "dog ears" that many women have under their arms after mastectomy.

Because of this, he decided not to just do 2 straight-across incisions, but rather 2 sideways Ts -- if you're standing in front of me looking at my chest front on, they look like this:

|----- -----|

And my surgeon did a great job -- I definitely don't have "dog ears." HOWEVER, I am overweight, and, when I've asked him for more details, it seems to me like he's trying very hard NOT to say that the T-shaped incisions were necessary because I have/had more fat. He's seems very concerned about not hurting my feelings, and I can appreciate his kindness.

SO, if you're not overweight, my guess is that this technique may not be right for you.

Rague · May 2015

Have you talked to a Chemo Dr yet?

Have you seen your Chemo Dr yet? It is becoming more usual to do neoadjuvant Chemo (pre-surgery) for all types of BC, not just IBC.

LE (LymphEdema) IF it happens does not end your active outdoor life unless you allow it to. I have been dealing with LE for 5+ yrs and I can assure it does not keep me from doing all I want to do. (I had 19 nodes removed in my UMX and all 19 were positive.). I knew going in that nodes were positive.

LE - just deal with the inconvience - doesn't slow me down. I ride/care for our horses, ride my bicycle, mow my yard (and several other yards) with my push mower, fly fish (tie fly's and build rods) among so many other things. We are each unique (Thankfully). There is no "One Size Fits All".

Winyan - The Power Within

Susan

gracegotmehere · May 2015

alabama_survivor said:
I had a BMX and chose no
I had a BMX and chose no reconstruction. I was diagnosed June 26, 2014 with stage 3C triple negative cancer on my left side (my dominant side), and DCIS (noninvasive, stage 0) on the right. I did 5 months of chemo before surgery to try to shrink my nearly 7 cm tumor. The right side, by the way, was noninvasive but widespread through my entire breast. I had my surgery on January 15, 2015. I had planned to do breast forms, and I did wear the puffy forms at first, but about 5 weeks into the radiation, my skin started to break down and become extremely raw and weepy. I actually developed an infection in one of those places, so I've been going "flat". I may or may not get breast forms, but I know I won't wear them all the time.

I did not think the mastectomy recovery was that difficult. The worst part was the drains that I had for nearly 4 weeks. I was never in a lot of pain, and I started feeling really good within a couple of weeks. You will probably have an even easier time than I did because you are younger (I just turned 55 last month), and I was still a little weak from chemo. As far as chemo, I did 4 biweekly dose dense rounds of Adriamycin (Red Devil) and Cytoxin. A/C for short. Then I had 12 weekly Taxol treatments. My biggest fear is that I would spend the whole time throwing up my toenails. At most, I had a few incidents of very mild queeziness that was easily taken care of with the meds I was given. As chemo progressed, I did have some pretty low blood counts, and extreme fatigue. With the Taxol, I had some really low blood counts, and I also developed a rash which delayed treatment for a couple of weeks. Through all of this, I only spent one night in the hospital, and that was the day I had my surgery.

It was tough, but none of it was as bad as I expected it to be.

I get courage and

I get courage and encouragement from reading your post. Thank you. I know so little about what is coming, but there is no other way to do this, and maybe that's okay.

gracegotmehere · May 2015

Rague said:
Have you talked to a Chemo Dr yet?
Have you seen your Chemo Dr yet? It is becoming more usual to do neoadjuvant Chemo (pre-surgery) for all types of BC, not just IBC.

LE (LymphEdema) IF it happens does not end your active outdoor life unless you allow it to. I have been dealing with LE for 5+ yrs and I can assure it does not keep me from doing all I want to do. (I had 19 nodes removed in my UMX and all 19 were positive.). I knew going in that nodes were positive.

LE - just deal with the inconvience - doesn't slow me down. I ride/care for our horses, ride my bicycle, mow my yard (and several other yards) with my push mower, fly fish (tie fly's and build rods) among so many other things. We are each unique (Thankfully). There is no "One Size Fits All".

Winyan - The Power Within

Susan

No I have not seen chemo doc

No I have not seen chemo doc yet. My surgery is in a few days. Thanks for the encouragement about LE. I have been working out every day and walking a ton to get my strength and endurance the best it can be before I have to be more careful for a while. It also helps me sleep more / worry at 3 a.m. less. Thanks for the encouragement!

crselby · May 2015

Someone to help clarify your thinking process...

Hi Grace,

Six years ago I had a lumpectomy and brachytherapy radiation, no chemo needed for DCIS, one spot. Last month I had a "bad" mammogram signaling a recurrence. The biopsy showed DCIS again. I would like to have bilateral mastectomies if I'm going to do anything, and am still wrestling with the reconstruction issue: to do or not to do, and if so, what kind. 2 days ago I saw the Clinical Psychologist at MD Anderson (it took a while to get my surgeon to make that order for the appt.). Best thing I've done for myself in weeks! She helped me sort through how I really felt about going flat, rejecting anything "fake", avoiding implants, etc. I now see that although intellectually that's how I feel, in reality, I love my breasts and will probably forever suffer the loss of looking like they are not there. If I do reconstruction, it will be for me, not those who look at me.

I hope you can talk with a professional counselor who is familiar with breast cancer patients and their needs. When I go back, I may ask for some anti-anxiety pills; I can't seem to sleep more than 3 hours at night, waking up in fear to think about what is before me and crying for the pain this is causing my family. I have only taken those once before (when I was to have a 3 hour, wide-awake procedure where 45 needles were put through my breast, then catheters slipped over those and capped off -- for radiation). But I'm pretty sure I will feel better if I could just get some sleep.

Please see if there is a counselor, not just the doctors, for you to talk to. It is worth it for me.

gracegotmehere · May 2015

crselby said:
Someone to help clarify your thinking process...
Hi Grace,

Six years ago I had a lumpectomy and brachytherapy radiation, no chemo needed for DCIS, one spot. Last month I had a "bad" mammogram signaling a recurrence. The biopsy showed DCIS again. I would like to have bilateral mastectomies if I'm going to do anything, and am still wrestling with the reconstruction issue: to do or not to do, and if so, what kind. 2 days ago I saw the Clinical Psychologist at MD Anderson (it took a while to get my surgeon to make that order for the appt.). Best thing I've done for myself in weeks! She helped me sort through how I really felt about going flat, rejecting anything "fake", avoiding implants, etc. I now see that although intellectually that's how I feel, in reality, I love my breasts and will probably forever suffer the loss of looking like they are not there. If I do reconstruction, it will be for me, not those who look at me.

I hope you can talk with a professional counselor who is familiar with breast cancer patients and their needs. When I go back, I may ask for some anti-anxiety pills; I can't seem to sleep more than 3 hours at night, waking up in fear to think about what is before me and crying for the pain this is causing my family. I have only taken those once before (when I was to have a 3 hour, wide-awake procedure where 45 needles were put through my breast, then catheters slipped over those and capped off -- for radiation). But I'm pretty sure I will feel better if I could just get some sleep.

Please see if there is a counselor, not just the doctors, for you to talk to. It is worth it for me.

wishing you grace and peace with your decision

My bilateral mastectomy with (one-side) sentinel node biopsy and without reconstruction is about 46 hours old. I went home from the breast center yesterday, exactly 24 hours after the beginning of my surgery. I went out for breakfast with my husband after getting the kids off to school this morning... Taking Norco every 6 hours and never have been above a 2 on the 1-10 pain scale yet, since surgery.

I am feeling at total peace about my decision to forego reconstruction, maybe just forego it for now, maybe for ever. I watched flap reconstruction and implant reconstruction fail and be removed in emergency surgeries in two women I'm close to. I agonized about this decision-- despite the fact that I could have had nipple-sparing if I had done it now, I decided against it. In my estimation, a reconstructed breast that did not have sensation would not be worth the increased risks and the maintenance required. I don't want to have to do maintenance surgery for my breasts in the future. In my research it seemed like a very high number of women reported discomfort with reconstruction or disappointment with it, both short-term and long-term. I asked my surgeon to make my flat chest look as healthy and beautiful as possible, and she did a wonderful job. It looks like a boys chest and is mostly pink, healthy tissue this close to surgery.

I can't put in to words what it was like to wake up in a dark hospital room after 7 weeks of knowing that I had cancer in my breast and smiling a huge smile in the dark to realize that it had been removed. Maybe I'll still have to do chemo and I'll definitely be taking tamoxifen. But that stress of having it there, knowing it was growing quietly... has been lifted. I feel great as I recover from my simpler surgery and enter my simpler recovery period than if I had done reconstruction. I am so grateful that I just get to enjoy this relief from having that tumor removed from my body and feel good enough to savor it. I look forward to my drains being removed, my skin beginning to heal, and figuring out how to use breast forms to wear some of my same professional and casual clothes. It helps that my husband tucked me in bed last night telling me about the first times he remembers ever seeing me and how striking I was then and still am. As much as this experience stinks, and as terrifying as cancer is, I feel strong and grateful now. Strong. Grateful. Lovely!

I wish you grace and peace as you struggle to make this decision. Please let me know if I can help you at all.

disneyfan2008 · May 2015

Soor you had to find us, but

Soor you had to find us, but great you did. I did not look for anything for over 2 yrs like this site...so much caring people here and many great suggestions and advice when YOU ask for i.

I kept a journal at the suggestion of someone-in hindsight it was helpful-

I always had someone come to all my appt in regards to surgery , for a 2nd pair of ears. I was all good, until one point and the rest is a blur-so it was good for others to sit in and listne.

Denise

GlowMore · May 2015

disneyfan2008 said:
Soor you had to find us, but
Soor you had to find us, but great you did. I did not look for anything for over 2 yrs like this site...so much caring people here and many great suggestions and advice when YOU ask for i.

I kept a journal at the suggestion of someone-in hindsight it was helpful-

I always had someone come to all my appt in regards to surgery , for a 2nd pair of ears. I was all good, until one point and the rest is a blur-so it was good for others to sit in and listne.

Denise

the BRCA

I cannot remember anything about being told about a BRCA way back in 2002 when I had my Lumpectomy/chemo/radiation (19 lymph nodes taken 6 had cancer) I'm Her2 NEGATIVE...actually I'm Triple Negative................but I can't for the life of me remember anything about BRCA. Maybe it wasn't found back then or something....maybe I would have done what you are doing....maybe maybe maybe..........I send you prayers for strength and courage and prayers for right decisions and God Knows we all send you love and hugs. Glo

Gm2873 · May 2015

GlowMore said:
the BRCA
I cannot remember anything about being told about a BRCA way back in 2002 when I had my Lumpectomy/chemo/radiation (19 lymph nodes taken 6 had cancer) I'm Her2 NEGATIVE...actually I'm Triple Negative................but I can't for the life of me remember anything about BRCA. Maybe it wasn't found back then or something....maybe I would have done what you are doing....maybe maybe maybe..........I send you prayers for strength and courage and prayers for right decisions and God Knows we all send you love and hugs. Glo

The BRCA

Glowmore,

The BRCA gene was discovered about 1996, but clinical tests for it weren't available until sometime in the early 2000's, so maybe it wasn't common when you were first diagnosed. With my first Breast cancer in 1994, they didn't know about BRCA or Her2, so I wasn't tested for either. That tumor was ER+ and PR+. I doubt it was Her2+ becuause I probably wouldn't have gone 20 years without another tumor if it had been. This time, they tested for both mutations and I was positive for both. Hindsight, if I had known in 1994 about the BRCA, I would have had a bilateral at that time, and probably would not have cancer again like I do now. But, it is what it is, so at least my daughter is now being tested and if she's positive, she's going to have her breasts removed. wouldn't want her to go through all that I have and am facing moving forward as a Stage IV, though currently, the tumors have responded well to the chemo. Herceptin is wonderful with very manageable side effects. Hoping to be NED soon.

Rague · May 2015

GlowMore said:
the BRCA
I cannot remember anything about being told about a BRCA way back in 2002 when I had my Lumpectomy/chemo/radiation (19 lymph nodes taken 6 had cancer) I'm Her2 NEGATIVE...actually I'm Triple Negative................but I can't for the life of me remember anything about BRCA. Maybe it wasn't found back then or something....maybe I would have done what you are doing....maybe maybe maybe..........I send you prayers for strength and courage and prayers for right decisions and God Knows we all send you love and hugs. Glo

Glo - I was DXd in '09 and I

Glo - I was DXd in '09 and I did ask my Chemo Dr about BRCA, Oncotest and Cancer Markers and he said that there was no reason that I should worry about BRCA as there is no history of ANY type of BC on either side of my family for at least 4 generations. Also IBC, is not considered to be genetic. (But there is so little research that has been done on IBC as we are rare - only 1% - 5% of all types of BC DXs.). No Oncotype either as it is for some types that are probably early stage. For me there was no question, I had to do neoadjuvant Chemo as IBC and positive nnodes, so no need to wait time testing. Cancer Markers - never had those either - Dr (and my PA whose opinion really matters to me) do not suggest them as both say they are not terribly reliable and can give a lot of false scares and false comforts.

As I say all the time - there is no 'One Size Fits All'. Our journeys are so individual.

Winyan - The Power Within

Susan

button2 · May 2015

gracegotmehere said:
No I have not seen chemo doc
No I have not seen chemo doc yet. My surgery is in a few days. Thanks for the encouragement about LE. I have been working out every day and walking a ton to get my strength and endurance the best it can be before I have to be more careful for a while. It also helps me sleep more / worry at 3 a.m. less. Thanks for the encouragement!

Sports

Hi, I'm sorry to welcome you to this club! I had Stage II with a 5cm tumor and 9 positive lymph nodes incl a 2cm tumor in one (June 2012). So I got a single radical mastectomy after 5 rounds of neo adjuvant chemo to shrink the tumors. I have decided not to have reconstruction for so many reasons (recovery time, too many surgeries needed, not wanting a foreign body in my chest wall, difficulty of diagnosing new cancers with silicone there, etc) I wanted to respond to you because I am very active as well. I got full underarm lymph node clearance and I'm doing great. Since the surgery, I had one bout of LE and I'm pretty sure it was from using a razor. Now I use an electric shaver and have had no more problems. I am careful not to do repetitive tasks for too long, but I am proud to be caring for my house (cleaning, dishes, ironing) all my myself now. I even have a vegetable garden that I tend by myself. Best of all, I am now back to even MORE arm exercise than before cancer. I now do 45 minutes of weights three x a week. How I did it was going VERY slow. At first, I just did yoga-like moves with no weights. Then I would do say 3 bicep curls with 2 pound weight. Skip a day and then did 8 curls. Anytime my arm started to get sore, I would scale back to 2-3 reps and start all over again. Now I can do 45 full minutes with 5 pound and 2 pound weights and my arms are ripped!! My surgeon is amazed since I have no lymph nodes. In addition to this, I began a running program (I was an avid walker before). I finished my first half marathon 2 weeks ago and I am training for a gruelling hilly 14K in June. I did the Race for the Cure (5K) last Sept and got third place in the survivor group at 29 mins. I can do 27mins now and can't wait for this year's race this Sept. Chemo and radiation are a distant memory. Btw I wear silicone prothesis(size D cup!!) all the time I exercise for balance to match my real side. Cancer in NO WAY will affect your active lifestyle and it just may enhance it. I'm doing all I can to enjoy myself while trying to beat the beast! You will too!!!! Hugs, Anna

button2 · May 2015

gracegotmehere said:
wishing you grace and peace with your decision
My bilateral mastectomy with (one-side) sentinel node biopsy and without reconstruction is about 46 hours old. I went home from the breast center yesterday, exactly 24 hours after the beginning of my surgery. I went out for breakfast with my husband after getting the kids off to school this morning... Taking Norco every 6 hours and never have been above a 2 on the 1-10 pain scale yet, since surgery.

I am feeling at total peace about my decision to forego reconstruction, maybe just forego it for now, maybe for ever. I watched flap reconstruction and implant reconstruction fail and be removed in emergency surgeries in two women I'm close to. I agonized about this decision-- despite the fact that I could have had nipple-sparing if I had done it now, I decided against it. In my estimation, a reconstructed breast that did not have sensation would not be worth the increased risks and the maintenance required. I don't want to have to do maintenance surgery for my breasts in the future. In my research it seemed like a very high number of women reported discomfort with reconstruction or disappointment with it, both short-term and long-term. I asked my surgeon to make my flat chest look as healthy and beautiful as possible, and she did a wonderful job. It looks like a boys chest and is mostly pink, healthy tissue this close to surgery.

I can't put in to words what it was like to wake up in a dark hospital room after 7 weeks of knowing that I had cancer in my breast and smiling a huge smile in the dark to realize that it had been removed. Maybe I'll still have to do chemo and I'll definitely be taking tamoxifen. But that stress of having it there, knowing it was growing quietly... has been lifted. I feel great as I recover from my simpler surgery and enter my simpler recovery period than if I had done reconstruction. I am so grateful that I just get to enjoy this relief from having that tumor removed from my body and feel good enough to savor it. I look forward to my drains being removed, my skin beginning to heal, and figuring out how to use breast forms to wear some of my same professional and casual clothes. It helps that my husband tucked me in bed last night telling me about the first times he remembers ever seeing me and how striking I was then and still am. As much as this experience stinks, and as terrifying as cancer is, I feel strong and grateful now. Strong. Grateful. Lovely!

I wish you grace and peace as you struggle to make this decision. Please let me know if I can help you at all.

Get well soon

Glad you got through the surgery! That's the biggest step. I felt exactly the same way - SO happy to have the disgusting lump gone! Keep posting and I'm wishing you all the best in the days ahead - take it easy for now! Best, Anna

gracegotmehere · May 2015

alabama_survivor said:
I had a BMX and chose no
I had a BMX and chose no reconstruction. I was diagnosed June 26, 2014 with stage 3C triple negative cancer on my left side (my dominant side), and DCIS (noninvasive, stage 0) on the right. I did 5 months of chemo before surgery to try to shrink my nearly 7 cm tumor. The right side, by the way, was noninvasive but widespread through my entire breast. I had my surgery on January 15, 2015. I had planned to do breast forms, and I did wear the puffy forms at first, but about 5 weeks into the radiation, my skin started to break down and become extremely raw and weepy. I actually developed an infection in one of those places, so I've been going "flat". I may or may not get breast forms, but I know I won't wear them all the time.

I did not think the mastectomy recovery was that difficult. The worst part was the drains that I had for nearly 4 weeks. I was never in a lot of pain, and I started feeling really good within a couple of weeks. You will probably have an even easier time than I did because you are younger (I just turned 55 last month), and I was still a little weak from chemo. As far as chemo, I did 4 biweekly dose dense rounds of Adriamycin (Red Devil) and Cytoxin. A/C for short. Then I had 12 weekly Taxol treatments. My biggest fear is that I would spend the whole time throwing up my toenails. At most, I had a few incidents of very mild queeziness that was easily taken care of with the meds I was given. As chemo progressed, I did have some pretty low blood counts, and extreme fatigue. With the Taxol, I had some really low blood counts, and I also developed a rash which delayed treatment for a couple of weeks. Through all of this, I only spent one night in the hospital, and that was the day I had my surgery.

It was tough, but none of it was as bad as I expected it to be.

5 days post BMX numbness

I have been doing well with recovery, stripping my own drains, moving around my house, then resting. However, I was unprepared for how frightening and disorienting the numbness is. I'm sorry to complain-- it's all new to me. With sutures going more than half-way around my torso, the numbness includes that whole area, my sternum sometimes up to my chin and lips, my right arm a lot and my left arm at times. I called my dr. on Friday and she said it was normal and would settle down, but what I read online (reputable places only) indicates that is the rosy picture.

Is there anything I can do to help this? I always take melatonin at night, and when my son had a concussion last year it was prescribed to him to promote deeper sleep because "that is where brain healing happens". I will continue taking it hoping deep sleep is where nerve healing happens too! I am feeling really discouraged by this. There seem to be so many **** aspects about the "new normal" after / with cancer.

gracegotmehere · May 2015

button2 said:
Sports
Hi, I'm sorry to welcome you to this club! I had Stage II with a 5cm tumor and 9 positive lymph nodes incl a 2cm tumor in one (June 2012). So I got a single radical mastectomy after 5 rounds of neo adjuvant chemo to shrink the tumors. I have decided not to have reconstruction for so many reasons (recovery time, too many surgeries needed, not wanting a foreign body in my chest wall, difficulty of diagnosing new cancers with silicone there, etc) I wanted to respond to you because I am very active as well. I got full underarm lymph node clearance and I'm doing great. Since the surgery, I had one bout of LE and I'm pretty sure it was from using a razor. Now I use an electric shaver and have had no more problems. I am careful not to do repetitive tasks for too long, but I am proud to be caring for my house (cleaning, dishes, ironing) all my myself now. I even have a vegetable garden that I tend by myself. Best of all, I am now back to even MORE arm exercise than before cancer. I now do 45 minutes of weights three x a week. How I did it was going VERY slow. At first, I just did yoga-like moves with no weights. Then I would do say 3 bicep curls with 2 pound weight. Skip a day and then did 8 curls. Anytime my arm started to get sore, I would scale back to 2-3 reps and start all over again. Now I can do 45 full minutes with 5 pound and 2 pound weights and my arms are ripped!! My surgeon is amazed since I have no lymph nodes. In addition to this, I began a running program (I was an avid walker before). I finished my first half marathon 2 weeks ago and I am training for a gruelling hilly 14K in June. I did the Race for the Cure (5K) last Sept and got third place in the survivor group at 29 mins. I can do 27mins now and can't wait for this year's race this Sept. Chemo and radiation are a distant memory. Btw I wear silicone prothesis(size D cup!!) all the time I exercise for balance to match my real side. Cancer in NO WAY will affect your active lifestyle and it just may enhance it. I'm doing all I can to enjoy myself while trying to beat the beast! You will too!!!! Hugs, Anna

looking forward to getting active again

but not yet.

Any advice re: 5 days post BMX numbness? (see post above) I'm struggling.

Gm2873 · May 2015

Rague said:
Glo - I was DXd in '09 and I
Glo - I was DXd in '09 and I did ask my Chemo Dr about BRCA, Oncotest and Cancer Markers and he said that there was no reason that I should worry about BRCA as there is no history of ANY type of BC on either side of my family for at least 4 generations. Also IBC, is not considered to be genetic. (But there is so little research that has been done on IBC as we are rare - only 1% - 5% of all types of BC DXs.). No Oncotype either as it is for some types that are probably early stage. For me there was no question, I had to do neoadjuvant Chemo as IBC and positive nnodes, so no need to wait time testing. Cancer Markers - never had those either - Dr (and my PA whose opinion really matters to me) do not suggest them as both say they are not terribly reliable and can give a lot of false scares and false comforts.

As I say all the time - there is no 'One Size Fits All'. Our journeys are so individual.

Winyan - The Power Within

Susan

BRCA

just an FYI....no one in my family has ever had Breast cancer that we know of on either side. Just me. I was totally shocked when I came up positive, but going back several generations buts you in an era when they didn't know much about BC and didn't have many tests for it. My genetic counselor thinks there may have been some Breast cancer in the past that went undiagnosed or that some of the mutations were passed down by the men in the family.

newbie w. Qs

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