If I Knew Then What I Know Now...

Anonymous · October 2007

Anonymous · October 2007

Julie's thread about how different we are after dx and some of the threads in the reconstruction forum got me thinking about the stuff I know now that I didn't know during dx, treatment and reconstruction but wish I did.

What do you know now that you really, really wish you would have known then?

For me, it would be information on how much damage rads can really do. I think I might have opted for no implants/immediate reconstruction then gone with the IGAP later. Perhaps then it wouldn't have taken three years to complete reconstruction.

I also wish I would have know that medical acccolades/know-how does not a good doctor make. Maybe then I would never had gone with the first oncologist I had...

Anonymous · October 2007

I wish I had 'believed' people when they told me that saline implants would be heavy. They told me and I said 'okay, thanks for the info.' This doggone thing is HEAVY. I should have found a doctor who would do silicon and gone with that instead.

NoH8 · October 2007

I wouldn't have changed anything with my treatment or surgeries, but when I saw the first oncologist I would have gone for a 2nd opinion since I didn't like him. Instead I waited until after 2 tx and found my wonderful oncologist and I wouldn't have had to deal with him for 2 visits. Not a big deal in the grand scheme of things, I just never realized how much a difference clicking with the right doctor means.

JoanofArdmore · October 2007

I wouldnt change anything about my doctors, or tx.I feel very lucky in that respect.

I feel lucky in all respects.

I would change getting bc, but--I didnt do it on purpose.

ophelia · October 2007

Hi ladies, I'm just starting to deal with all this garbage so I don't know what I would do differently yet. Probably by next year I will but I wanted to tell you that I think this is a great thread. I hope others who have gone through this will chime in. I'd like to read more of your experiences. Wishing you all well.

Anonymous · October 2007

I loved my little onc who left me over a year ago. I don't think I'd change anything either. I had a doctor who I thought and still think was looking out for ME. As badly as we feel (or some of us) I think having an oncologist who's caring is half the battle.

Shirley

djd · October 2007

I would have gotten a mastecomy and immediate recon with my first diagnosis of DCIS. I would have avoided a new primary, tissue damage from radiation, MRSA staph infections, 17 months of wound care and the eventual mastectomy with recon no longer a viable option. The prosthesis fills out my clothes nicely, but it starts to feel like an anchor at the end of a long day and I just can't wait to take it off!

That said, I made every decision with what I thought was very good information, and things could have gone much more smoothly - I was just always in that 3 - 5% group that seemed to have everything go wrong! It makes it difficult for me to answer a newbie's "what should I do?" questions these days. I want to be honest, but I don't want them to assume that they will have the complications I experienced.

Sadie-Rose · October 2007

Hi Everybody,

I haven't given this a lot of thought today, but I really like this thread and hearing your wishes.

I really had a struggle finding the right doctors in the beginning, but I am so happy with my oncologist and surgeon, the struggle was worth it.

I wished I had asked more questions about long-term side effects. I know at the time my focus was on survival, but it feels uncomfortable finding out the long term health impact a little at a time. Each time I uncover something new there is a bit of grief attached to it.

I wish I had known earlier that I would worry about recurrence, but the teeth would come out of the intensity of it. Since I an triple negative and most of the information I find is not positive about this diagnosis; it has challenged me to try to leave the day to day presence of cancer behind me...At least set it to the side of my daily life.

I wish I had been more assertive early on about blood draws and asking for the most experienced practitioner because my veins were going to be damaged.

I have a wonderful oncologist who treats the emotional side of cancer, as well as the medical side and I appreciate her very much. I have been pretty happy with my treatment and follow up

Now I want to do more mind-body practices. I want to play more. I want to witness every milestone in my children's and grandchildren's lives. I want to connect deeply with others and not worry about being self-conscience. I want to feel every texture and taste all the richness around me. Basically, I want to live!

BethNY · October 2007

I would've b*tch slapped my first surgeon, who wanted to remove my breasts like it was nothing. Who told me I was lucky, cause chemo in the winter would mean my wig would keep my head warm.

I would've listened when everyone said shave your hair instead of waiting for it to fall out.

I would've learned about xanax a yr earlier than I did.

I would've spent some of my sick time on the couch watching anger managment videos instead of Oprah.

Yup- I think thats my list...

JoelKM · October 2007

I wish we had gone directly to a breast surgeon on our first visit instead of a general surgeon.We changed docs right after our first visit.The general surgeon performed the biopsy. But I wish we had dealt with the breast surgeon right off the bat.

I also wish we had taken an OncotypeDx test before we did anything. It woud have helped us make desisions later about endocrine therapy (tamoxifen vs AI).

I wish we had structured our treatment so we would have been candidates for the NSABP B-38 trial on partial breast irradiation.We could have elected to have mammosite or 3D conformal PBI instead of having whole breast irrariation.

I wish we had been able to sign up for Mel Silverstien's phase 1 study of intraoperative irradiation at USC. Basically, you're done with radiation right after surgery.

I wish we had know that there are more complications with ports placed in the subclavian vein than there are with ports placed in the interior jugular. My wife ended up with an extensive clot in her neck. Coumadin and Lovenox caused complications with surgery.

I also wish I had had more timeto learn more about the latest chemo regimens so I could have discussed this more thoroughly with our oncologist. We ended up with AC->T which is not a bad regimen to take. Still, I would like to have looked at TAC or TC.

Other than that, I've been pretty satisfied.

abbadoodles · October 2007

I would have had a mastectomy with the first diagnosis 15 years ago instead of the lumpectomy plus radiation. Of course, at the time I was thinking how wonderful it was to be able to save my breast. Little did I know that it would come back to haunt me 15 years later with another cancer in the same breast.

Of course, hindsight is 20/20. Tongue out

Tina

If I Knew Then What I Know Now...

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