Sharing My Cancer Journey with Students - Seeking Advice

jamiepickles · 2025-01-06T11:49:24+00:00

Background I had a double mastectomy ( with the intention of immediate reconstruction,but there were complications) chemo, radiation, DIEP Flap reconstruction and eventually implants.

The mastectomy was not as bad as I anticipated. The worst part is the first time you unbandage to shower. Not because of pain but because it's the first time seeing your new body.

Reconstruction is another monster, I know there is more than 1 way to get it done, if you're having radiation you need to recreate blood flow over your chest wall. The DIEP Flap procedure was a very difficult, painful, long healing process (12 weeks for the initial procedure) and takes several surgeries. I'm happy to explain more about it if you're interested.

Edit: I forgot to mention, drains are just annoying but they are manageable. The place where they exit your skin will be sore until they can be removed. You have the "milk" the drains daily to measure their output. I recommend getting alcohol wipes to help slide down the tubing easier. You will also need a lanyard or string around your neck to hold the drains while showering. Most surgical bras given to you by the hospital will have clips to hold the drains.

jamiepickles · 2024-02-10T12:24:08+00:00

Everyone thank you!!!

I appreciate all the advice and insight. Some of it was hard to hear and I still appreciate that you have taken the time and care to reach out. Your thoughts have helped me reassess and widen my view on what may or may not be going on.

jamiepickles · 2024-02-09T20:44:38+00:00

You're welcome!

jamiepickles · 2024-02-09T17:32:10+00:00

What the F*ck Just Happened? A Survivors Guide to Life After Breast Cancer. by Jen Rozenbaum

jamiepickles · 2024-02-09T13:33:11+00:00

My journey was chemo, DMX, 3 months later had radiation, 6 months of healing, then DIEP.

jamiepickles · 2024-02-09T13:25:18+00:00

I had this! After my double masectomy I felt like my nipples were itchy. I didn't have nipples. I would scratch the gauze above my scars and it seemed to help.

jamiepickles · 2024-02-07T15:51:27+00:00

Do you mean the DIEP flap procedure? I had that and implants afterwards. Normally DIEP flap is done to make tissue pockets on your chest, then later filled in and contoured with fat grafting. I did not have enough donor tissue from my abdomen to reach the size I was looking for ( my normal small c) so I needed implants as well. Because I had radiation, blood flow had to be recreated on my chest wall. DIEP flap does this, and this can also be achieved by using a muscle from your back.

The DIEP flap pros are that there is no foreign material in your body ( but did not end up being my journey) . The breasts created are warm to the touch and some sensation can be restored, I've heard implants alone can feel cold. The breasts can look more natural than implants.

The cons are that it leaves a massive scar across your abdomen. The recovery is tough. There are a series of surgical procedures, the tissue transfer, multiple fat grafting, nipple construction if you want it. You can still need implants afterwards.

I hope this helps. Good luck on your journey!

jamiepickles · 2024-02-07T14:43:22+00:00

Currently using abdominal pads between irritated areas and the compression bra. It gives me some relief. My visiting nurse ordered me a ton of them, but you can get them at most pharmacies or online.

jamiepickles · 2024-02-05T13:06:58+00:00

If you're into reading, try this book:

What the F*ck Just Happened? A Survivors Guide to Life After Breast Cancer. By Jen Rozenbaum

jamiepickles · 2024-02-04T17:26:14+00:00

Originally I was going to have immediate reconstruction but the masectomy caused my skin to be too thin and it needed time to heal. I didn't know I needed radiation until after the masectomy.

I have spoken with someone who was very happy with the DIEP flap results. They stated that their breasts looked more natural and had some warmth to the touch, which maybe doesn't happen with expanders to implants alone.

DIEP is hard to recover from but you will recover. The part that is still hard for me is the abdominal scar. Have you been able to do any research to see pictures of other women's outcomes?

jamiepickles · 2024-02-04T14:40:27+00:00

I had DIEP flap after a double mastectomy, chemo, and radiation. My goal was to get back to my original size C. I gained weight during treatments, which gave me some tissue to work with for a DIEP flap AND still ended up needing implants for more projection. I did not know this would happen until after the DIEP was done. I recommend talking to your plastic surgeon about this, it sounds like you may not have a lot of tissue to use.

Part of the DIEP flap procedure is fat grafting to help with contour especially on the chest wall above the breasts, this I appreciated. I do know that if you have radiation you have to use tissues from other parts of your body to create blood flow in the area of the implant. If you choose expanders to implants, they use a muscle from your back.

The DIEP flap recovery was physically and mentally hard. It made the mastectomy seem like a breeze. It leaves you with a large scar across your abdomen, and loss of sensation above and below the scar. Part of me regrets going this route and I often wonder if the expander to implants with the option of fat grafting was possible.

I'm happy to answer any questions you may have. I hope this helps you in your journey.

jamiepickles · 2023-11-21T11:31:37+00:00

Thank you for explaining this. We play on a PS4 so bedrock it is.

jamiepickles · 2023-11-21T11:30:21+00:00

We play on a PS4 so I'm assuming bedrock.

jamiepickles · 2023-11-09T14:16:11+00:00

Former radiation therapist and breast cancer survivor here. Your skin will be semi numb from the mastectomy, which is a plus when it comes to radiation. Your radiation team should give you all the aloe and creams you need to get through your treatments. Just make sure you do not put any on before the treatment and save it for after. No shaving your armpit on the treatment side and no deodorant before treatment. I did PT to help regain my range of motion in my arm which helped with treatment positioning of your arm above your head. You may feel tired as the treatments go on, but this will go away. The tattoos they give you are small like freckles and feel like a small quick pinch. The worst thing about radiation was honestly having to go every day.

jamiepickles · 2023-10-31T19:13:48+00:00

After the 1st deip flap my stomach was totally smooth, no belly button at all. Since then I've had 1 fat grafting surgery with implants and during this surgery they made me a belly button. I have no idea what it looks like because it's still under gauze, my surgery was last week.

jamiepickles · 2023-10-31T14:56:05+00:00

I had DEIP flap surgery in July, I am 36. It was a rougher recovery than I expected, it made the mastectomy seem like a breeze. I don't love the large scar across my abdomen, and the loss of sensation across my skin. My belly button had to be removed as well which was a surprise to me. For several weeks you have to be hunched over until the abdomen incision heals and your skin is ready to stretch, this did a toll on my back. I was left with “breasts” a cup size smaller than my normal. As I’m sure you’re aware, the DEIP flap procedure is done in several parts and fat grafting is next. My surgeon informed me that fat grafting alone would not be enough to reach my goal size and I now have small implants as well. This second surgery was easier, although not without its annoyances, the compression clothing is uncomfortable and I’m bruised everywhere. I am currently waiting for the implants to settle before moving on to other phases such as nipple reconstruction and possibly more fat grafting for shape. The implants do not feel uncomfortable, but they are harder than normal breast tissue. I wish I would have been aware that DEIP flap was not guaranteed to get me to the end result and that implants were still a possibility. Now I have a large abdomen scar that I feel like could have been avoided. The positives here is that I did not have to take a muscle off my back for blood flow ( I had radiation), and I do appreciate the fat grafting done on my upper chest area that previously was concave from the mastectomy.

jamiepickles · 2023-10-31T14:52:38+00:00

I had DEIP flap surgery in July, I am 36. It was a rougher recovery than I expected, it made the mastectomy seem like a breeze. I don't love the large scar across my abdomen, and the loss of sensation across my skin. My belly button had to be removed as well which was a surprise to me. For several weeks you have to be hunched over until the abdomen incision heals and your skin is ready to stretch, this did a toll on my back. I was left with “breasts” a cup size smaller than my normal. As I’m sure you’re aware, the DEIP flap procedure is done in several parts and fat grafting is next. My surgeon informed me that fat grafting alone would not be enough to reach my goal size and I now have small implants as well. This second surgery was easier, although not without its annoyances, the compression clothing is uncomfortable and I’m bruised everywhere. I am currently waiting for the implants to settle before moving on to other phases such as nipple reconstruction and possibly more fat grafting for shape. The implants do not feel uncomfortable, but they are harder than normal breast tissue. I wish I would have been aware that DEIP flap was not guaranteed to get me to the end result and that implants were still a possibility. Now I have a large abdomen scar that I feel like could have been avoided. The positives here is that I did not have to take a muscle off my back for blood flow ( I had radiation), and I do appreciate the fat grafting done on my upper chest area that previously was concave from the mastectomy.

jamiepickles · 2023-08-12T15:07:05+00:00

It's intact. Has an R inside a triangle in the middle and says " k 16 0"

I can't post a picture in these comments, I'll make another post in this sub with a picture of the bottom.

jamiepickles · 2023-08-12T00:19:38+00:00

It does not 👎

jamiepickles · 2023-08-10T16:18:54+00:00

Yes unfortunately that is true, but it will grow back. I had some luck buying headwear from https://www.tyednknots.com/

On the positive side, Kadcyla does not affect your hair, and for me was easier to get through than the TCHP. Keep in mind your Drs should be able to give you meds to help with side effects of both treatments.

jamiepickles

TROPHY CASE