Three options, none appealing. What to do?

FieryMe

I was diagnosed with DCIS in May. I have had two surgeries without success and am facing a mastectomy. I am seeing this as having three options.

1) Unilateral mastectomy without reconstruction.

2) Reconstruction using an implant.

3) Reconstruction using my tissue.

I was told that reconstruction using my own tissue is invasive and painful. I have already recovered from two c-sections as well as these two breast surgeries so the idea of healing in that spot again is not appealing to me to say the least. I am allergic to the "good" pain meds and can't tolerate much (I blame low pain tolerance on being a redhead), plus I have two kids to care for who need me up and around as soon as possible after surgery. I hear this one has longer recovery time. I have also heard that this type of reconstruction doesn't last long. That many women have had the transplanted fat disappear and they ended up needing an implant anyway in a few years.

The other option is using an implant. I know many women swear by it and are happy with theirs, however I really don't like the idea of having a foreign body in my chest. I don't mean to offend anyone, it just doesn't seem right for me. I've read stories of women needing them replaced after 10-15 years which is not ok with me and I worry how it'll look because it won't match the other side anyway. In both types of reconstruction I've read that there will be multiple surgeries--first to reconstruct and later to adjust the reconstruction so it looks right. I don't want to sign up for more pain and expense. Neither of these options sounds right for me.

The last option of course is mastectomy without reconstruction. But I'm not 100% sure if that's the right thing for me either. I'm 39 years old and a D cup. How obvious is it going to look with only one breast? Pretty obvious. I have read all about prosthesis and such. They are hot and heavy and can be expensive. I already have back problems and I live in Texas (current temp outside 104.)

I'm angry and stressed by this whole thing and just want it over but I don't want to make a decision based on fear of pain (which shouldn't be discounted either.). I'm asking for guidance. I need to make a decision soon.

Thanks.

Itzy

Fiery Me,

I am sorry for this terrible ordeal you are living through. My situation was so different from yours, I am old enough to be your mother, my disease was bilateral, plus I was an A cup. But my choice was simply no immediate reconstruction.  I chose to see how I would handle life without breasts, and make the decision to choose one of the reconstruction options later if I felt inclined to pursue it.

You know that you will have the mastectomy, so that part of the decision is already made. The choice for what comes next is ultimately for the most personal of reasons, and every one has different motivations and concerns. IMO, waiting to decide step 2 is completely reasonable.

FieryMe

Itzy - Thanks for reaching out. I just know in my heart that if I wait to reconstruct, I won't do it. I'll be too afraid of the extra pain and expense. I'm so heartbroken right now.

hummingbirdlover

Hi Fiery,

It's a list of awful choices, I know. My story is a little different than yours in that I opted for BMX but although I knew I wanted reconstruction, it had to be delayed. So, I actually lived "flat" between my BMX in October and placement of my TEs in March. It wasn't all that bad actually. I didn't really mind the prosthetics and my insurance covered the entire expense for them. They were a bit hot and heavy but I mainly wore them in the cool months and I was only a B cup. I asked about the different types of tissue transfer but I wasn't a good candidate for any of them because I didn't have enough extra tissue (and I too worried about the recovery time for that type of surgery) so TEs were the only option I had and to be honest, they haven't been all that bad. Uncomfortable, but tolerable and now I'm heading into my exchange surgery on Thursday. You just have to do whatever you feel is best for you and you can always opt for no reconstruction now and change your mind later. If you have insurance, I think you have a 2 year window to have reconstruction and still have it covered. I'm sorry you have to make these tough choices but do whatever is best for you. ((hugs))

Englishmummy

Fiery,

It is horribly hard to make these life and body altering decisions when you have been blown away with the shocking dx.  

I had a nipple sparing double MX on June 10. I am 41 and had bilateral BC. I chose BMX because I had smallish boobs and was advised a better cosmetic result would come from MX. I felt my boobs betrayed me and I wanted them gone (that feeling has worn off but I know I made the right choice - for me) and I did not want radiation.

I knew off the bat that reconstruction was for me, I fully admire those that don't reconstruct - this is such a personal decision, I would never judge either way; to each their own. I am doing silicone under the pecs, which I hate the thought of as I am an all natural, organic gal, but being small I was not a great candidate for the other proceedures, plus I would not have opted for them due to the time-out-of-action required.I also did not want more anesthesia than necessary....  These is just my opinions, experiences, and thoughts, I know others will disagree and that is fine, I fully appreciate our differences.... Please don't sell yourself short for fear of pain or your family not coping - do YOU want reconstruction? To me that is the first question you must answer, just from your heart, is it what you want?

 Your family WILL survive : I was 'CEO of Everything', I did the lot and thought my crew would fall apart if I was out of action for a few - I never get sick. They did not fall apart, they pulled together and made the best of it, things weren't perfect but I am not a perfectionist, I don't expect too much of others. It is just me and immediate family - hubby and children, as my family are in Spain and England, my hubby's family are well, that's another story! I would not inconvenience many of our friends, so we did it alone. I can now say, on the flip side, my family are more appreciative of what I do and help out a lot more - there is no way for me to show you but believe me, some amazing experiences and learning curves can take place - we are closer now.  The PS told me it was better to get all the pain out the way in one go, and that suited me, I trust him implicitly. I totally get the wanting to do what is best for your family and basing your decisions on that, that was the most important thing to me - but please think about you - this is a big thing, make the decision just for you.

 I have TE's in right now and have been done with all my fills for a while - I forget they are even in. My exchange will be Oct. 9th the PS told me I would be fine the next day, no heavy lifting but able to function - I made him swear that I could do my sons B-day party on Oct 18 and he told me I would be fine...I shall be holding him to that.

I had ON -Q painballs for the MX surgery ( and 3 days after) - they are brilliant, don't make you drowsy or nauseated and I took virtually no pain pills because I was pain free:) Uncomfortable yes, painful - not at all, hand on my heart. Be sure to ask your surgeon about the ON-Q. I took extra strength Tylenol 4 times. I was prescribed oxycontin, and there they sit a top my wardrobe unopened. I was in the hospital less than 24 hrs (some come home after 12 hrs with umx depending on the surgeon) and was able to get on with small tasks after just a few days - I am a stay-at-home mum and I homeschool my 3 children ages 8,10 & 12. My hubby took 10 days off work and I could not wait for him to go back - I love him to death, but I needed to get on with it.... I was back to regular routine at the end of week 1 - slower and more careful with my 'T-rex arms' (not allowed to reach over shoulder height) and with the extra help from my children as needed. At week 4, I was back to everything - running, working out, everything except lifting over shoulder height....my PS wanted none of that for six weeks.

I'll close now as this is way longer than I anticipated - I am so long winded, hope you are still awake.  This is all so overwhelming, but the difference a few months on is incredible. There is light at the end of the dark, bleak tunnel - you likely just can't see it yet.

Think about it for you Fiery, I hope you find peace in your decisions.

Laura x

 

Ridley

Hi Fiery -- It is a crappy decision to have to make.

Just wanted to mention something re: tissue reconstruction -- I wonder if you are confusing autologous tissue reconstruction (e.g. DIEP, free TRAM, other flap surgery) with fat grafting. The former is when they use your own fat (usually from your lower abdomen), and reconnect the blood supply from the transposed fat (they actually take a piece of fat and move it) Its a long surgery because it involves micro-surgery to reconnect the blood supply in the fat flap to a blood supply in your chest. A flap can fail because the blood supply connection does not work, but everything I have ever heard, read, etc. states that if it is going to fail, it fails during the first 2 days after surgery. For this reason, you want to find a surgeon who has lots of experience with this type of reconstruction if you choose it. You can also have spots of the flap die (called fat necrosis), which from what I've read, happens fairly soon after surgery as well. I've never heard of women having their flaps re-absorb over time and having to supplement in the long-run with an implant.

Fat grafting is when they take fat from another area using a technique like liposuction and then inject it into the breast. Fat grafting doesn't involve transferring a blood supply with the fat, so there is definitely a chance that it will reabsorb because the fat cells have to find a blood supply on their own to live. Fat grafting is most often use to fix dents, etc when you have either a flap or implant surgery, although I know there is a reconstruction technique called BRAVA that uses fat grafting only.

I'm not trying to convince you one way or the other, just don't want you to make a decision without the appropriate info.

I had bilateral DIEP (after a lumpectomy). It was a long surgery (almost 12 hours), but not a painful recovery for me. I have had good luck with pain after surgery and I don't have kids, so I'm probably not a good comparator for you. I also had two subsequent tweaks -- fat grafting twice and nipple reconstruction with the second fat grafting. The first fat grafting reabsorbed almost completely and the second is better (and gets me to good enough). There is a 2015 DIEP board (as well as prior years) that you might pop on to if you have more questions on this type of reconstruction.

Good luck with your decision.

NancyD

Fiery,

I went over two years before my DIEP recon from a BXM. In those years I researched methods and plastic surgeons, and while I knew DIEP had it's drawbacks (pain and possible failure), it ultimately was the best solution for me because there is NO reabsorption of the fat and I will never have to have implants changed every 15 years.

I also can't tolerate the "good pain meds" and am a redhead (maybe something to that?) but my pain tolerance is pretty high. Considering that, it was pretty hard for week, but I am looking back on it five years later and can say it was definitely worth it.

So what I'm saying is don't be afraid of waiting and looking for what kind of recon will be right for you. If a D cup prothesis is the only thing turning you off from no recon, consider a reduction of the non-cancer side. (So there's another option.)

queenmomcat

No help, as I am not, at this time, faced with your choice, but just my deepest sympathies! I'm a DD, and NONE of the options appealed to me!

Englishmummy

Actually, there is supposedly something with redheads and opiate painkillers - it appears there is often a sensitivity....if you google just that you can see the many articles!

FieryMe

Thank you all for the info and support. My husband keeps asking me what I want and I keep thinking that I want this to not be happening. Guess that's not an option. I have one more plastic surgeon to see but he couldn't get me in for three weeks, even for a consult. I've had such a hard time with doctors and referrals that I can't even think about it without choking up. What a journey. I'm still in a lot of pain from my last surgery, which was at the beginning of June. Half of the breast tissue is already gone. My heart keeps telling me that I just need to let the other half go and leave my poor body alone. My head says hang on until after the next consult. Thanks for the support.

jennyblues

I am also struggling with which surgical option to pick because I'm BRCA1+ and also fairly young (33). I had initially planned to do a lumpectomy + rads, but now that I know how difficult radiation makes reconstruction, and that I have a high risk of a second cancer, I'm wondering whether it would make more sense just to have the BMX now.

Ringelle

Fiery - I was in a very similar situation about a month ago. I was dx with DCIS in early May. I had two lx's that still left me with positive margins and my BS told me I needed to do a mastectomy. After talking to a PS about all my options, I chose to have a bilateral mastectomy. After I shared my thought process with my BS he said he doesn't often see a bmx for DCIS but he thought my choice was reasonable for me. My PS encouraged me to delay reconstruction until I knew if I needed radiation and until I lost some weight and got my blood sugar to good levels. In hindsight, I'm so glad I made this decision. First of all, in order for me to get beyond all this and still loose weight, I needed to keep myself in a good head space and feel comfortable in my own skin. I was fairly certain having only one large breast (I was 42 DD) was not going to help in that area. I kept saying "I'm the kind of girl who hangs my bra next to my car keys when I come in the door" This is so true. I have to be comfortable. I couldn't see me going "free" with one breast and being comfortable at home without a prosthesis. Having both removed hasn't been as hard emotionally, physically or psychologically as I thought it would. I am confident this was the right decision for me. In hind sight, I was able to get all the stress of the DCIS behind me before making a reconstruction decision. I'm 2 weeks post op and the healing is not too bad. The biggest trouble is fatigue. But - I am going back to work tomorrow so I think that is a plus. If I had to choose reconstruction at the time of the bmx, I would have chosen implant. Now I'm considering all my options with a clear head. I have time to research and think. I also know now I have another option - no reconstruction. I'm 42. I'm trying this "going flat" on for size. I kind of like the freedom. I realize I haven't dressed up yet, been clothes shopping, gone swimming, or been out in public much. All of these may change my thinking/feeling. I like feeling like I have time and control over my situation to make a decision that's best for me. I feel the same way - having a foreign "part" in me that has to be constantly monitored makes me uncomfortable. The other surgical options sound gruesome and painful to recover from. These are all things I'm going to talk to the PS about tomorrow during another consult (post DCIS). I just wanted to share my experience with you. I'd be happy to share any information about my decision making process with you if you have any other questions.

Moderators

HI jenny blues, Welcome to the community. We are glad that you reached out here. While you are waiting for some responses you may want to check out some information on our website about Reconstruction and Radiation. Hope this helps with some of your questions. Keep us posted. The Mods

Tomboy

Can't you just take tamoxifen for DCIS???

Meow13

There was very little pain with my DIEP , my surgeon did say I was unusual in that way.

Unbreakable01

Hi,

I didn't have any surgeries before having to have the unilateral mastectomy. I was faced with three choices, one slightly different.

1. Mastectomy with immediate reconstruction and TE

2. Double mastectomy with TE

3. Lumpectomy with radiation

I understand your feeling of frustration with scheduling doctor's appointments and not getting them. I had issues with my BRCA testing because people could not do their job right and did not provide the right information. I cried that day out of frustration. My receptionist at my breast surgeon's office was incompetent and the competent nurse who also doubles as a receptionist was out for 2 weeks, which was when I needed to get everything scheduled for my surgery.

When I was given the choices I said what is option D, because none of them seemed great. In the end, I went with the unilateral nipple sparing mastectomy with immediate reconstruction and the TE. So far so good. I had surgery on July 29th and have had two fills so far. The TE and breast is stiff, so that's different. I'm an A so thankfully there's not too much to expand.

In the end, make the choice that's best for you. I know we'd all like to not have cancer, but that's not the option that's listed. Have a support system that will be there for you. I was thankful to have my friends, and family.

Tamiami

Hi FireyMe~ You've already received such good info. It IS a really hard choice. The one thing that I would tell every woman going through this, is that having the mastectomy(s) first and taking the time to recover physically and emotionally is a GREAT option! I think it would give you a chance to find out how you feel about not reconstructing, and if that didn't feel right it would would give you time to weigh the reconstruction options. Also, I think you have 5 years to complete reconstruction and have it covered. Another positive is that your kids will be older and better able to fend for themselves if you wait to reconstruct. I think recovery from mastectomy(s) is much easier without immediate reconstruction. Best wishes!

Erica3681

Tamiami makes some really good points. You are going through a very stressful time and it's hard to make such an important choice about reconstruction quickly. If you have a simple unilateral mastectomy now, you can always have delayed reconstruction later. If you want more information about not reconstructing, you might check my non-profit website, BreastFree.org. I also contribute to the blog here at breastcancer.org. My posts can be found at https://community.breastcancer.org/blog/author/bar.... Several of them talk about non-reconstruction as an option.

Best of luck with this difficult decision.

cookiegal

I have not had reconstruction personally, but I know my PS and BS do a lot of one step implants. (They are in NYC, but someone else must do it too.) , I would imagine you are talking about a skin-sparing scenario, but it's my understanding you can do an implant in one surgery.

I heal really slowly and can't imagine I would ever do a flap. I have met people who are so happy with that choice, but when it goes bad it is bad.

Everything has drawbacks.

A lot of people have delayed recon. You could see how life is like with a prosthesis, but I get that in a hot climate it's not going to be the easiest options.

zparrot61

I am meeting with the surgen on Wednesday and am wondering if I am going to be told that I need to lose weight before surgery. I weight about 200 pounds and am a 40DD. How much weight did they want you to lose? Thanks, Laura

Ringelle

My PS wants me to loose 30-50 pounds. More importantly he wanted my bmi between 26 and 30. I am also type 2 diabetic and he wants my sugar in low 5's. From what I'm hearing from others, not all PS have these stipulations but I understand with higher bmi and diabetes there are more risks of complications with surgery and after. There are also more options for recovery when your health is better. I have started a thread for those trying to loose weight before reconstruction of you are interested.

zparrot61

Thank you! What is he thread?

Laura

Ringelle

Here's the link for the thread. No one has really joined me yet for a discussion but I'm hoping maybe we can get something started - atleast a place for encouragement. https://community.breastcancer.org/forum/44/topic/834685?page=1#idx_1