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Super Confused: Reconstruction vs Flat

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battleangel
battleangel Member Posts: 3

Hello Warriors,

I am extremely new and learning all the terms, jargons, abbreviations here. Please excuse me for any ignorance.

Recently diagnosed:

43 yr old, F.

Right: Stage 1, grade 3 Microinvasive. DCIS. Macrocalcification span of 8 CM

Left: Microcalcifications. 11 mm mass. Multiple cysts are Benign.

Genetic Test: Negative.

ER+

Scheduled for: Bilateral Mastectomy, Nipple Sparing with Lymph node sentinel on March 10, 2023

I met with Dr Manahan, she recommended to wait until the C is fully out and then work on the reconstruction.

I am confused:

1. Do I really need Reconstruction? I dont want implants (just terrified of a foreign object inside me). I dont have alot of fat, PS said she could 'try' and get fat / tissue from tummy. What does try mean? what if she cannot get enough fat during the surgery?

2. Do I need to let the surgeon know if I want to get reconstruction or not during the Mastectomy surgery?

3. If I choose to go Flat during Mastectomy, is it possible to get reconstruction later?

4. Is it advisable to do Nipple Sparing? What if Cancer cells have expanded to Nipple?

5. What are the practical difficulties after Mastectomy? Will I be able to do my personal work after the surgery? How long will I be bed ridden?

6. What are some of the things you all got before leaving for the surgery?

7. How much does the sex life get impacted after this journey? I have no signs of menopause and regular with my cycle right now? Not sure if that is going to change after this too.

8. Absolutely terrified of the reconstruction process, recovery and multiple surgeries. I practically dont care of what others think about how I look. But wondering if I am making the right decision. My husband doesnt care which one I pick too. So not able to make the decision.

Any help or suggestions would be extremly helpful.

Thanks and Love to you all

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,961
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    You have lots of good questions! I can't answer all of them and you should also remember that individual experiences and varying outcomes differ from person to person.

    1. No! Reconstruction is a personal choice. Going flat is an option that is available to all. Those who choose to go flat should request a flat aesthetic closure so no loose skin is left behind.

    2. Though you can have delayed recon, if you've made your decision by surgery time, let your surgeon know. For those interested in delayed recon, skin is often left behind for when that recon occurs. However, if you are not sure at surgery time, please let your surgeon know that as well.

    3. Yes, delayed recon is possible but as mentioned above, let your surgeon know that this is a possibility.

    4. Whether your mx is nipple sparing or not is usually a medical call. If cancer cells are too close to the nipple, the nipple needs to be removed. I actually had to go back for a second surgery to remove one nipple after the final pathology report showed cancer cells close to the nipple.

    5. Bed ridden? Only until I was safely clear of the general anesthesia! They get you up and walking fairly quickly and encourage walking balanced by rest. There were restrictions on lifting things but I was fairly functional very quickly. The trick is not to overdo it and find that balance between activity and rest. I was in very little pain (I had one step implants). At no point would I have described myself as bed ridden.

    6. Preparing an easy to get in/out of sleeping place and having things you need at an easily reached height were important to me. There are many post mx specialty items you can buy. I chose not to buy them because I had items around the house which were good subs and that period of time is relatively short.

    7. Pass

    8. I had a very easy recon experience but that was just me. The reality is there are no guarantees and if you read through our recon threads, you'll see experiences range from easy to miserable. If you are seriously considering recon find a ps who does a lot of the procedure you're interested in. My ps only did recon, no cosmetic enhancement, and I credit his experience for my successful results.

    I was always sure I wanted recon so for me it was a matter of what type of surgery. After 11+ years, I am still happy with my decision. Everything went according to plan (except that pesky nipple removal) but there is no guarantee that complications won't arise. All surgeries carry risks and we have to be prepared to deal with them if they occur. Have you considered speaking with a second opinion ps? Sometimes that can help in your decision making. Take good care

  • anniepnw
    anniepnw Member Posts: 23
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    angel - I had my DMX on Feb 07 and after agonizing over the reconstruction decision for over a month pre-surgery, decided to opt for an AFC (Aesthetic Flat Closure) and go flat. And yes, the recon is possible down the road if you change your mind. There are several groups on FB that you can find, at least one for DIEP flap (it sounds this is what your PS had in mind while talking about harvesting fat from your tummy) and at least two for ladies who choose to go flat. I belong to the DIEP group and Flat and Fierce for flatties. Tons of information for both options. There are also FB groups for implant recon but it sounds like you are interested in those; I wasn't either.

  • battleangel
    battleangel Member Posts: 3
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    Thank you very much to both of you, so happy to know that I wont be bed-ridden :)

    I absolutely don't want implants. I am considering about DEIP flap, but the process looks terrified.

    Its great to know that recon is possible after AFC.

    But where will the skin come from, if I choose to go AFC now and recon later?

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,961
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    If you do an AFC, excess skin will be removed. DIEP can move skin flaps to your breast area. On some delayed recons, AFC may not be the best choice but I have heard of putting in temporary expanders to stretch the skin, which are later removed during the DIEP surgery. If you don’t do an AFC, and the tell your ps you are considering delayed recon, they may leave excess skin (if medically possible) to later accommodate the recon. These are the kind of details that need to be discussed with your ps as they are the best ones to tell you what is or isn’t possible in your individual case. Each of us is a bit different and the most important consideration is removing any and all skin and tissue that might contain cancer cells. Take care

  • aprilwind
    aprilwind Member Posts: 13
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    Appreciate your detailed and helpful information!

    I'm just wondering, do you think it is better to arrange a person to take care of the patient after mastectomy, and for how long?

    Or the patient just need to arrange to have prepared meals? Thanks!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,961
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    Most folks are doing surprisingly well after a bmx/mx. I think I was asked if someone would be with me for the first night I was home (11 years ago, so there was a longer hospital stay than most experience today). It was very helpful to have all things I needed at counter top level so I didn't have to reach up or lift anything. The day after I got home, my family went to work and I did well alone all day. I needed only minimal assistance. Please bear in mind that we are all different but many find recovery easier than imagined. The op mentioned the word bedridden but with rare exceptions, virtually no one is bedridden, not even while in the hospital. I think it would be comforting to have someone with you for a day after discharge but I know we have members who have done this by themselves (pre-op meal prep helps). Take care.

  • spookiesmom
    spookiesmom Member Posts: 8,178
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    If you have other mobility issues then you might want someone with you. You will be able to walk, toilet, heat food, etc. Agree having things counter top level so no stretching upwards. You should not be bedridden. It is a big surgery, recovery is not as hard as you may think.

  • anniepnw
    anniepnw Member Posts: 23
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    They sent me home the same night, and I did just fine. I was on my computer the next morning (reading, not typing) as I was bored. Typing the day after. :) Second everything above, and one more thing: before the surgery I did make and freeze a large container of chili, another one with shredded chicken, and the third one with roasted veg, and it was definitely helpful.

  • cyathea
    cyathea Member Posts: 334
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    battleangel, I agree with the others. As for #7, I think that sex is more about what is happening in your brain than having or not having breasts. If you let not having breasts affect your outlook and behavior then it probably hurts your ability to connect with your partner and it doesn’t help them adjust to your new body.

    I have a flat, aesthetically pleasing closure with nipple grafts. Nipple grafts just the top layer of skin, not really “nipple sparing” like they do for some recon surgeries.

    After 3 years, my scars are very light and I don’t even notice them. My nipples need a tattoo in some spots but I haven’t done that yet. I’ve adjusted to my new look and it feels “normal” now. I don’t feel ugly or undesirable.

    Whatever you decide, please know that either way, you can get to the place where you accept how you look. Don’t expect that during the first few weeks, of course. Give yourself some time to adjust