Scared to death

Louise O'Brien · 09-29-2008, 03:07 PM

On Nov. 4, I'm scheduled to have the first of two breast reconstruction surgeries: the first is the reconstruction on the left side ; four months later reduction on the so-called good side.

I've always been confident and have complete confidence in the surgeon but now I'm getting scared. Really scared. It's Diep surgery - eight and a half hours long - and that's a long time to be under anaesthetic.

My husband is now getting worried and says he doesn't want to "lose" me. I'm actually preparing a financial file (since I do all the bookwork) just in case.

I have a project I'm involved with now that is luckily distracting me but that doesn't help at night when I can't sleep - or in the morning when I wake.

My husband wanted me to explain why I wanted to go through with it - why I couldn't just leave things be.

I guess my answer is pretty immediate - this isn't a cosmetic fix. That's not how I think of it.

I'm just so uncomfortable the way I am. I'm too large - and when you just have one, it's bizarre. Sometimes it's even hard to sleep. I'm sick of having to fill the other side with that rubber thingy. The thought of putting on a smaller sized bra sounds like heaven to me.

But is all the post-operative pain worth it?

The other thing that has me worried is C-Difficile. In our province hospitals now have to post the number of cases they have each month - and the hospital I'm going to had seven new cases in August. In truth, most hospitals deal with it but it's not something I want to catch and I feel I could be vulnerable when I'm in the hospital for a length of time. By the way, that's not considered a high number - it's about par for the course and it's something that exists in most hospitals in North America. I'm going to one of the best hospitals in our province - it's a university-based, teaching hospital.

But still. The doubts are coming in and quite frankly I wish I could get some kind of *sign* that would tell me to cut and run.

The funny thing is - I'd be disappointed if I didn't follow through.

Now aren't I a conflicted mess? Any help out there?

hutchibk · 09-29-2008, 03:50 PM

I understand, it's never easy to face any kind of surgery. I didn't have Diep recon, so I can't speak to the particulars.

But I know that some ladies on our site will be able to help you wrestle through.

Love, easy answers, and God's speed!

Sheila · 09-29-2008, 03:55 PM

Louise
Any surgery has to have the pros and cons weighed...surgery is always not without its risks. I chose reconstruction with an implant...but after all was said and done, I wished I had left well enough alone. It is such a personal choice...sending prayers to help you with this enormous decision....you will make the one best for you!

swimangel72 · 09-29-2008, 04:01 PM

Hi Louise - I'm sorry you have so much anxiety, but it's very normal prior to such a major surgery. Still - if you have done your research and checked out your doctor and hospital stats, you should feel a measure of confidence. Many women have fantastic cosmetic outcomes after their Diep surgeries - but everyone recuperates differently. I think your reasons for going through with the surgery make sense - but your husband is permitted to worry. After all, hospital infections are a big deal these days - I should know - my surgery lasted 7 hours - and I ended up with a MRSA staph infection in my abdomen which really delayed my healing. Also - months after my surgery - I found a study online that says women who have had prior abdominal surgery, including c-sections, run a 24% increase risk in abdominal donor site complications. Here's the link to the abstract - you can bring it to your PS if you fall into that category.

http://www.ncbi.nlm.nih.gov/pubmed/18453974

So your husband's fears aren't groundless. Have you interviewed any of your surgeon's "successful" patients? Are they all satisfied? It would be good also to talk to any of his patients who were less than happy - if he'll give you any names. I hope you'll feel less conflicted as your surgery date drawers nearer!

hutchibk · 09-29-2008, 04:23 PM

I have always been told that the most important person in the room is the anesthesiologist. Make sure you get the BEST one in their field in your city. Meet with them ahead of time with a battery of questions.

'lizbeth · 09-29-2008, 06:08 PM

Hello Louise,

I can relate to your anxiety about the surgery. I had my mastectomey and immediate reconstruction in January. Between the 2 surgeons I was under anethesia for about 8 hours. I came through just fine.

You need to take all your concerns to your surgeon and discuss them. The reconstruction is a major surgery and I can empathy with your anxiety. Please don't allow yourself to suffer with lack of sleep and worry. Ask questions of your medical team.

I am happy that most of my reconstruction is finished. I still have some additional surgeries to fix a partial loss and match the other breast to the reconstruction.

If I can help in some way please email me at tsio520@aol.com

Wishing you an event free surgery and a beautiful reconstruction,

'lizbeth

Mary Jo · 09-29-2008, 06:14 PM

Hi Louise,

Take a deep breath.....think about WHY you wanted to do this in the first place....know you've done all the research and are confident with your decision (if you truly are - which I believe you are) and then TRY to let it go as you wait for your "new you" day to arrive.

Of course, you know I can't tell you that your experience will all go fine, but I can tell you that mine did and I experienced EVERY EMOTION you are now going through. EVERY ONE! I almost canceled the surgery a few times - strictly out of fear. Also, I tried to convince myself that I really didn't care one way or the other if I had the surgery and that I was fine with being breastless.

That being said, I was fine with being breastless. I am not defined by my breasts nor am I defined by outward things. My inward self - my soul - my heart and my relationship with my God is what defines me AND I am a very content, happy person BUT............. deep down, I KNEW having breasts again was something I really wanted to do for many reasons. It had nothing to do with it being cosmetic....but had everything to do with me "putting myself back together" ~ physically and emotionally. My breasts were taken from me and although I always accepted it and knew beyond a shadow of a doubt it was what was best for me, I now had the opportunity as a SURVIVOR to get them back by the miracle of a procedure that makes them ALMOST as good as the original (better really - they don't sag

). It also was a way for me to move forward and to let go all that I had went through - I needed to do this for me. I needed to let go of the fears that often hold us captive while living with a cancer diagnosis and to do something positive and good for me just because I wanted it for me.

I prayed and asked God to please give me a successful, perfect surgery, with no complications and perfect results. I prayed...I believed and I moved forward (scared out of my mind much of the time) BUT would not let fear rule me and back out because of the dreaded "what if".....................

So, on June 17, 2008 I did it. I had delayed bilateral DIEP by Dr. John Hijjawi at Froedtert Hospital in Milwaukee. My surgery was 10 hours and went "perfectly" (Praise God) - no complications (Praise God) and perfect results (Praise God). I didn't find the surgery itself - recovery - that big of a deal, honestly. Yes, it was uncomfortable (didn't really have pain per se - more just discomfort) but not that bad. I stopped all narcotics within 2 days of the surgery and only took Tylenol after that and was walking 2 miles a day by 2 weeks.

So, dear sister.......it can be good.....you can do it...(if you truly want too).......you are strong.....and if you want this for yourself then go for it. Don't let fear make your decisions.

Trust me....I checked out EVERYTHING. You'll hear so many different things from many different people. Some people say your cancer will come back after surgery (no doctor told me this was true and believe me I asked and asked more than one) HOWEVER even that being said......I would not allow my fears to make my decisions. Cancer may have "got me" but it doesn't "have me!" I make my decisions and NOT cancer fears. God is my leader and He is in charge of my life. I needed to let it go - let God and move forward.

I am now 3 1/2 months post op - feel awesome - have beautiful breasts and do not and will not regret this decision no matter what comes my way.

So Louise, I hope you get your "sign" and I pray Peace touches you so you can move forward - one way or the other.

I hope this helps you somewhat..........

Love from your "sister"

Mary Jo

StillHere · 09-29-2008, 06:44 PM

Hello Louise
Feel free to read my survivor story for details. Here is a summary. There are things I would do differently, but I have always been glad that I oped to have a prophylactic (left) and needed right total mastectomy. I was unable to have reconstruction right away due to radiation treatment of right breast. I did have muscle sparing bi-lateral free flaps 12 months later. I have never regretted having the surgery. I hated the rubber boobs. They were heavy and hot. ( I hated the wig thing also). I can go w/o a bra w/ a large t-shirt or sweatshirt. I did go back 6 mos later and have saline implants placed under the muscle because as hard as it was for me to believe, I did not have enough fat to make boobs that would stick out past my tummy. Loved the tummy tuck that went along with it. I work in the surgery dept, so I was able to hand pick my staff. I agree the anesthesiologist is just as, if not more important to pick as your surgeon. I was a surgical tech for 10 yrs, so I witnessed many surgical mishaps. This did increase my fear, but I had confidence in my team. I did have to go back for emergency surgery to regain blood flow to my left flap. All turned out fine. Again, I want to state that I would do it again. I forget that my boobs are really belly fat all the time! I hope that all goes smooth for you, but if by chance there are bumps to overcome, most often they can be fixed fairly easy. Don't be afraid to ask for anti-anxiety drugs to get a good nights sleep. Take Care and follow your heart.

KS

G. Ann · 09-29-2008, 11:28 PM

I think it's normal to have concerns and go back and forth over your reasoning. The other comments already mentioned are very encouraging and honest. I'm facing scheduled mastectomy in Oct for precancer in remaining breast and starting reconstruction on both with expanders. It's a difficult and very personal decision. I've had restless nights and cold feet for two months, but keep coming back to what I hope to accomplish. Appearance is part of it and also a desire to just be done with it. I'm confident in the decision for mastectomy. The reconstruction is my "wishy-washy" dilemma.

My husband goes along with my decision for the mastectomy vs excisional biopsy that was recommended as next step after July's stereotactic biopsy--(his comment--"just get it off"), but he doesn't understand the reconstruction part. (His comment, "but I'm not a woman!.") Let's both work on peace of mind for whatever decision is made, OK?

harrie · 09-30-2008, 12:35 AM

Louise, I also had the DIEP and I could not be happier with the results. Sure it was one heck of a long surgery, but you know what???>>>> it was hardest on my dr who worked on my all those hrs and my family who were waiting. For me it was like a 5 min nap!!..kinda...
I consider my DIEP like one positive miracle that came out of this whole cancer ordeal. It is a work of art and an amazing work that was done on my body.
Try to relax....it went great for Mary JO and me...and I see no reason why you will not be just as happy.
ok?
Maryanne

Becky · 09-30-2008, 06:12 AM

Dear Louise

I understand your fear even though I still have both of my breasts. I had double lumpectomy with my 1.9cm Her2+ cancer on the right and a low grade HR+ only dcis on the left. Everyday I wonder what I was thinking to keep the girls around. I have totally changed my lifestyle and I keep thinking that since I have seen chemical results of that change (38 lb weight loss, cholesterol than went from 261 to 206, cardiac calcium scoring of 0 etc etc) that there are chemical results in the breasts too and perhaps nothing more will happen to me in that regard. I also had a ooph and I am taking Arimidex but still... I had cancer on both sides and I am not BRCA positive! So, I am seriously considering a bilateral with immediate reconstruction wih DIEP. In the next 6 months I am going to do all my research, doctors etc. I figure that the girls just have to go. It will be an even bigger operation since I will have to have the breasts removed and then reconstruction.

Operations do have their risks but you really have to go into it with the idea that the recon is what you really want. Is it? Would this greatly improve the quality of your life and outlook? If you don't do it, will you regret it more than the anticipation of having the operation? What will you regret more (both short and long term). If you think you will regret not having the surgery but you cancel it anyway, risks get worse as you age. You will always tolerate the operation better the younger you are since, theoretically, you have less additional health issues.

Don't let fear rule this decision. If you are making an informed decision, you will know potential side effects and know what you need to do to tackle them should they arise.

Keep your face to the sun and a smile on your lips.

dlaxague · 09-30-2008, 10:18 AM

Hi, just a quick thought for Louise and G. Ann. If you cannot get past the "scared to death" or even the "wishy washy", there's middle ground. Although it stretches the whole thing out even longer, which I'm sure does not appeal to you, plus Louise is not thinking about mastectomy regardless. But I'll throw it out there anyway, for consideration.

You could have just a simple mastectomy and see if the symmetry is mostly what you are after. Live with flat for awhile and then you'll know for sure what it is that you want. Do comfort, symmetry, and decreased risk of a second cancer get you close enough to content that you don't care so much about breasts (and the surgery involved to achieve that)? I'm not saying that you won't wish that you had breasts. I doubt there's anyone who doesn't long for their breasts back. But it's all a trade-off. This for that. My "this" may be trivial to you but vital to me. And vice versa.

Or is it not working at all to be flat (either with or without prosthesis)? After six months to a year, that answer would be clear to you, and you could proceed with surgery then. Done that way, you'll also be more likely to achieve symmetry with two new breasts done at the same time (that for Louise).

I agree that anesthesiologists are important but I'm not sure how one would assess that quality in an interview. Some are in that field because people-skills are not their forte' but they can still be excellent at what they do (keeping us comfortable and alive during surgery). And for something like DIEP, the surgeon's experience and skill is really really a critical component. My guess would be that a surgeon able to do DIEP has achieved that elite status that allows him to pick his anesthesiologist. That might be a good question to ask your surgeon - "do you choose the anesthesiologist?".

I'd better stop here or this won't qualify as "quick" even by my standards. Know that whatever choice you make will be the right choice, for you.

Love,
Debbie Laxague

sarah · 09-30-2008, 10:55 AM

Louise,
Remember the surgeon and anesthesiologist have done this a lot of times and are pros. The results are amazing - it will feel just like your other breast. However that said, it hurts like hell when you wake up. Make sure you understand where the morphine drip is and how it works and hopefully it's stronger than what I had. You certainly won't get addicted to it! You'll wonder if it's working.
Also be sure that you have enough time in hospital to recover and don't overdo it when you get home - you'll need help getting out of bed, etc. and will probably go home with drains still attached to you.
In hospital, they put massaging rubber pants on me to avoid thrombosis and I had to breathe into a tube every hour to avoid getting pneumonia. So make sure to talk to the hospital staff rather than the doctor to know what will happen. The docs avoid talking about anything. You'll be given ice to "eat" for a couple of days, then apple juice or something like that. So be sure you or your husband knows what's going to happen so when you wake up, and that you know what's what --- where's the button to push for painkillers, where's the button to push for a nurse. Friends gave me audio books to listen to and music which was perfect. I couldn't watch TV or a movie but I could listen and enjoy a story.
good luck, remember lots of people have gone through it and the pain ends and you will get your life back.
hugs and love
sarah

Jackie07 · 09-30-2008, 11:10 AM

Hi,

I only wanted to comment on the 'length' of the surgery. When I had my brain surgery (unrelated to Breast Cancer) in 1990, it went on 25 hours because or the size and location of the tumor. I didn't have any infection until I went home 40 days later and then had some edema along the scarr line - went back to the surgeon and it was taken care of.

If the surgeon and the staff are well trained, there shouldn't be any problem as far as 'the length of the surgery' goes. Make sure you have family/friends with you. I had always had a family member in my room and it helped to communicate with the staff since they were always very busy and had a lot of patients under their care.

I've been flat-chested all my life, so I didn't have reconstruction and all my padded bras still fit. I was tempted to have reconstrcution done so perhaps I can look even better than before the mastectomy. But I just thought it was too much trouble and decided not to mess with it.

Take a deep breath and go for your decision.

juanita · 09-30-2008, 04:59 PM

just wanted to sends hugs and prayers your way!

Louise O'Brien · 10-01-2008, 04:00 PM

Thank you all. I'm so touched by your advice and the time you all took to answer my concerns. Your advice was so good.

You've addressed the fear issue and that has really defined it for me - I know it would be a huge mistake for me to make a decision based only on fear. I've come too far to let that stop me. Haven't we all?

I will go through with it - because I know if I don't - I would always wonder. I'm pretty sure I would regret it.

Funny when you mention anaestheologists because that's something my surgeon is big on - he believes the dose, the timing of the anaesthesia has a huge part to play in the success of the operation. So he's very hands on where that's concerned. And he doesn't discharge anyone from the hospital until he thinks they're ready to go. He has a lot of clout.

All this doesn't mean I'm not scared any more. I'm still scared s&*tless. Maybe that's natural considering I've only got a month to go and the clock is ticking.

It's going to be a long month. Right now, I just want it over with.

harrie · 10-01-2008, 11:45 PM

Louise, my pain/discomfort level was similar to Mary Jo's. I had some discomfort, but no significant pain and was off the IV pain med by day 2 also. The most significant discomfort I had was antacid reflux from not eating the first 48 hrs. Tums and chicken broth helped. I was up and walking by 48 hrs.

Believe51 · 10-03-2008, 07:59 AM

I will keep you in heart and prayers tomorrow as you undergo your operation. I will pray that things go off without a hitch, that you find some true peace and that you heal fast and steady. Keep the faith and post us when you are feeling up to it. And remember Louise, we are right here for you with love, prayers and positive energy, as always>>Love, Believe51

Mary Jo · 10-03-2008, 08:24 AM

Hi Marie,

Just wanted to say that Louise's surgery isn't until November 4th...not October 4th. I noticed you thought that when reading your post.

Just wanted to let you know.

Mary Jo

Believe51 · 10-03-2008, 08:53 AM

Oooopsie! Thanks Mary Jo, I am going to start today anyway since she seems to be so distressed and in need of serious prayers and positive thoughts. All of my love>>Believe51

ps: the way I have been thinking and acting lately.....you would think I am on 12mgs of Decadron instead of Ed!! LOL