Just when I think I'm getting close...

rachelvk

I was diagnosed 8/16 after finding a lump on 7/12. After a delay to get the brca test, and then get a sense for which surgeons (BS and PS) I felt best with, I thought I was making progress. Last week I decided on the PS and started coordinating with their offices for surgery and tests. After debating, I decided to tentatively go for a DIEP, pending the results of a CT scan to check about whether they would need to take any muscle. But it doesn't look like the scheduling can happen until the end of October, more than 3 months since this all began.

What made me feel really bad, though, is that when I brought that up with the BS scheduler, I quickly got a call back from the BS (who I've seen once), who said he'd stay out of it, but just to remind me that the DIEP is a long, complex procedure. It was as though he was implying the reason it would take so long to schedule was because I chose the DIEP, and that I might not be making a good decision. Now, I went to see the PS he recommended, who went through all that, and said I was a good DIEP candidate, and brought in their DIEP specialist to talk with me and start moving ahead.

I just want this over with. Am I being vain by worrying about what I'll look like afterwards? I can't imagine delaying reconstruction, but if it means getting through surgery more quickly, is that the better choice?

People keep reassuring me about the time frame, but being TN and seeing some of the situations that have come up to surprise other TNs, three months is frightening.

Sorry for the venting. I'm amazed at how little guidance there is for us through the process. I'm glad at least for this discussion board.

livinglarge

I too find it amazing that there is such a stand off type approach.  None of my doctors would advise me either.  My onc said they are not allowed to.  In a world where everyone is constantly trying to tell you what to do and then here where the consequences could be life or death everyone just waits for your decision.

I was told I was not a good candidate for DIEP but it did seem rather intense.  Was very happen with the TE and reconstruction.  I would say doable pain and somewhat reasonable recovery period.

Do what gives you the desired result.  Good luck and let us know what you decide.  

rachelvk

I guess it's the flip side of patient empowerment. I'm sort of old fashioned - I'll do what a doctor advises, unless it sounds completely out of left field. Did you do a lat flap? I was discussing both options with the PS. I've just read a number of TE and implants complaints, whereas almost all of the DIEP posts I see are women raving about it.

livinglarge

I did not do the lat flap.  The PS went over the recovery time and I opted to just do TE and implants.  I can't sit still that long.  

I think no matter what you will find folks on both sides of the fence.  Knock on wood but I thought the whole process was pretty easy and didn't have any issues that I didn't expect.  I am happy with the size and how they look (all things considered) and my DH gives them a thumbs up (not that he would say if he didn't).

I too am a little old fashion and was kind of expecting some guidance.  Just when you think you have it figured out they change the rules. 

Luah

Through my journey I felt like a lot of decisions were left to me... it was both agonizing and empowering. However, reconstruction wasn't one of them. I was told pretty well flat out that if I elected for Mx, it would be a long delay to try to coordinate BS and PS schedules, putting it out of the question for me. In fact in Canada (and perhaps elsewhere in the world) I think immediate reconstruction is pretty rare. This may well be a resource issue, but it also enables patients to recover quickly from surgery and move right into chemo. Just another point of view.

livinglarge

Very interesting to see how different areas have a slightly different spin on process.  Here since I was TN before any surgery it was straight to chemo for 3 months then surgery was scheduled precisely between 21 and 28 days after my last chemo.  The BS did the BMX and then PS puts in the TE and sews you back up with the intent of leaving space and skin for the implants which didn't happen until like 6 months after BMX/TE surgery.

It is a very long process. 

rachelvk

Living - Thanks for your input. The latest curve I was thrown is that I would be the first patient that the BS will have had who opted for a DIEP. I can understand his concern for dealing with a new technique. Yet it was the PS he sent me to who guided me along this path.

My options now are:

- Go through with the surgery as planned, perhaps being the first guinea pig at this center that just hired its new DIEP PS expert;

- Now that I've really grown to love the idea of a DIEP, say, fine, just do a lat flap and get it over with; or

- Pick up and find another team with more experience - perhaps adding another 2-3 weeks to the process.

livinglarge

Those are some options.  I can understand your concern with not wanting to be the first one and I think I would feel the same way.  

I know the feeling of wanting to get the process over with and to stop waiting, however there is something to be said about patience.  

All I can say is really think it thru and then make a decision and don't look back.  

Let us know what you decide and we will always be here for support.