Diagnosed Yesterday 1/2/18

Veeder14

Thanks for the information. I'll do some research. Does your insurance company pay for it? I can't really swim laps due to my spine issues but I like to sit in the hot tub and don't want people starring at a flat chest so thinking about prosthesis that can get wet.

Lisey

Hi Veeder, If you join the facebook group Flat and Fabulous - even just while you are deciding, you'll see a ton of swimsuit ideas that work really well for us flatties! I personally, think I look better flat, than with huge DDs. I tried recon and it wasn't for me.. it felt alien and foreign - not to mention the pain. I've been boy flat for a year and half and honestly I don't think anyone even notice - though people did ask if I lost weight - I look thinner for sure.. I can jog for the first time in my adult life, and feel 100% back to 'me'. I don't were any stuffies at all - I were a halter top swim top that I think is flattering and tons of wispy boho shirts in summer.. the clothing choices open up for those of us who are flat.

I think it's really wise you aren't doing immediate recon and weighing all your options. I wish I had done that.

Momine

Veeder, yes, there are special breast forms designed for swimming. I don't actually bother. I have a couple of swimsuits with fairly sturdy built-in bra cups. Wearing the suit with nothing in the cups still leaves a small bump. Just makes me look like I have a tiny A-cup, which is what I used to have back in my 20s. It depends on your build and your preferences, but there are many options. There is a forum for those of us living the flat life, and you will find a lot of support, tips etc. there.

Veeder14

Momine,

I've got some swim suits with cups in them that might work. I also have racing suits from my lap swimming days that might fit me after surgery if there's no breasts on my chest. I guess it doesn't matter that much how it looks to other people as long as the suits are comfortable. Thanks for taking the time to comment.

Anonymous

Yes, your insurance company is obligated to pay for both MX and recon, or just the MX/BMX whatever you choose. I believe it's a federal law.

Anonymous

Re lack of movement because of lymph node removal---I had no loss of movement and 11 were removed. They are so tiny it should not make a difference. It was the tightness in my pec muscles that came with the BMx/Recon that slightly restricted movement in the very beginning.

lrwells50

Vender,

I think as far as limited movement everyone is different. The PS used Exparel at my surgery, a non-opiate that lasts several days, and I had very little bad pain. In fact, I had to remind myself not to do stuff. Everyone is different, and I had my daughter here to cook (I just had to stay out of the kitchen so I didn’t go into shock at the mess) and do laundry. After she left, we ate a lot of take out, and my husband carried the laundry in to the washer for me. The only reason I didn’t go back to work full time after two weeks is because I had two of my drains for 4 weeks, and although I put them in a Home Depot canvas nail belt (really handy) I just didn’t have tops that covered them. Also, I’m an accountant that works for my husband, so didn’t have anyone pressing me to come back.

I don’t know if because it didn’t hurt I was overdoing, but I think some people just make more fluid than others. The NP at the PS had to aspirate fluid for 4 weeks. Luckily I was numb enough tha5 I couldn’t feel it. I also read before surgery about how awful tissue expanders were, and I had no trouble with mine.

My post surgical labs changed my tumor from IDC to ILC, and my Onco was a lot higher than anyone expected, so I did chemo, but I had no real problems with it either. I feel I’ve been extremely lucky.

Veeder14

Irwells50,

Thanks for your post and glad your treatment and recovery went smooth. Thanks for telling me about Esparel, I'll mention it to my surgeon because I have a horrible time with Narcotics. Most of my previous surgeries I didn't take any narcotics although prescribed to me but mastectomy sure seems like more of a major surgery.

I had quite a problem with only 2 lymph nodes removed from my upper leg. Never had drains, maybe I should have. The problem with the seromas went on for months until they got totally infected, were drained again, and the area had to heal from the inside out. Which meant packing the space until it healed. I'd like to avoid that. From what I read it seems like more lymph nodes are removed from the underarm than other areas? Are people more at risk for getting infections with more lymph nodes removed? I haven't noticed with the leg ones removed.

Veeder14

Claieinaz,

Thanks for your post. I've constantly got tightness in my shoulders, shoulder blades, and front muscles due to the damage in my spine. I go to PT regularly. I'll just continue PT when the surgeon says I can.

Lovelife44

Hi Veeder,

I am 2 days out from BMX, and I am doing fine. I am walking and eating, showering and getting around the house, but taking a couple of naps a day. I have no little to no pain, just some tightness around the stitches, took a Tylenol today before my shower, just in case I stirred things up...but I didn’t. I had ILC which was very difficult to image. I was terrified of surgery, I have never been ill in my life and never had anaesthetic, but it was really not so bad. At my hospital, many go home same day as surgery but I elected to stay overnight. Drains are a bit of a pain but perfectly manageable. I agree with the suggestion that is it good to have someone with you when you speak to the doctors, there is a lot of information and I would freeze from overload sometimes, or forget to ask things. I had to make a decision on reconstruction on on the day of surgery. I was not a candidate for immediate recon ( diabetic) and the plastic surgeon said he wanted to see how well I healed first. I had a skin sparing surgery so I can decide later if I want to reconstruct or not. I still don’t know, I have made so many decisions lately, this one can wait a bit. I am glad I did BMX though. I wish you the best and hope you pull through it fine.

Veeder14

Lovelive44,

I'm so glad to hear your doing well. You can take a shower right away? What does skin sparing surgery mean?

lrwells50

Showering right away depends on your PS, and mine said wait until the drains were out. That was a pain

EastcoastTS

My surgeon used Exparel as well as a nerve block. Some surgeons use a pain ball (Q something or another) but my surgeon used Exparel. Talk to them about pain management.

I had skin and nipple sparing surgery. I'm not the best at explaining, even though I had it!, but surgery does not remove your skin (or nipples, if you save those). This depends upon factors that you must determine with your BS. Where the tumor is located, etc., etc. Only some are able to spare skin. My incisions are in the IMF fold (under breast) so less noticeable. That is one plus. There are lots of nipple options after surgery if you don't keep them. Tattoos, etc. I've seen some GREAT work. Really impressive what they can do.

I did have pain with BMX. Completely tolerable. I believe it was more on the recon side (tissue expanders) than the actual BMX. But I don't know that for sure. I had small breasts, too, and not that much tissue taken in the end-all, be-all.

I was able to shower after 2 days I think. With drains but they sealed them off with this plastic type tape. This ALL depends upon your surgeon's preference. For Exchange to implant surgery (much less involved than BMX), I had to wait about 5 days to shower. No drains but another kind of tape over incisions. Different surgeon. So it all depends. Ask your BS and PS all these questions. Or their nurses.

Veeder14

EastCoastTS,

Thanks for commenting about your experience. I'll definitely discuss pain management with my surgeon. Are you both BRAC 1 & 2? I'm BRAC 2 however the genetic counselor said they only test for the gene mutation that your family member had. So my mom is BRAC 2 and they didn't test for BRAC 1.

BringOn2017

Dear Veeder I was diagnosed with DCIS a year ago and opted for BMX which I have no regrets around. I opted for reconstruction at the same time which I guess I was sort of talked into by my medical colleagues as I initially thought of going flat. No regrets either way.

Regards the pain afterwards, looking back I think it was reasonably bearable. During the surgery, they infiltrated the chest wall with local anaesthetic so I actually had no pain in the first 12-24 hours post op. I avoided opiates completely (they tend to make me sick and even though I was given a PCA pump I didn't use it) and opted for regular paracetamol and eterocoxib 120mg dly which I only needed for 10-14 days. The first couple of days after surgery were hard as even though I wasn't in pain when not moving I couldn't raise my arms at all and I needed help to wash and dress. But things were so much better by Day3!! I was washing on my own and managing to dress. See that you have blouses and button down shirts and pj tops /nightdresses as they are so much easier to handle! 

I think the restriction in arm movements is mainly related to the insertion of tissue expanders - I was told not to raised arms above shoulder levels for 6 weeks but that was to avoid the TEs being raised high in the chest so to speak. If you don't have TEs, you may be asked not to raise your arms for a couple of weeks or so if they remove lymph nodes from arm pits to reduce risk of lymphoedema. 

Regarding mobility, I was in hospital for a few days with the drains, and thankfully went home without them on Day 5 post op. I managed to shop at the local shop across the road who kindly did my deliveries for me. I cooked a simple lunch the day after I went home with some help from my 9 year old little girl. I was going for regular short walks within 10 days of surgery. I had to avoid getting glasses and jars from overhanging cupboards and learnt to live with a lot of things on cupboard surfaces. I also left clothes out on the spare bed as I couldn't reach into wardrobes and open drawers on my own. I also learnt to see use small water bottles and to ask people to open bottles for me as they were too hard to open. So long as you prepare for a bit of adjusting to routine, it is doable! You may also be told not to take the washing out of the machine, but I am not sure if that is a restriction related to the TEs.

A few months down the line, I was back into fulltime work, working 8 -10 hour days. I swam through the summer, went on to 2 vacations in the summer holidays and finally got the guts to go through with my exchange which I am now recovering from.

Regards your question re swimming if going flat and fab, my aunt had her umx 15 years ago when in her late 30s and has never stopped swimming. She buys a special swimsuit and has a prosthesis that she fits into it, and she too has never looked back.

Take care and good luck with your visit with your surgeon and your decision.

EastcoastTS

Veeder:

I'm BRCA negative. Though I wonder if there is a connection since my mom also had ILC. But nothing found to connect us yet. All genetics were "clean" for me.

Veeder14

Hi EastcoastTS,

Thanks for responding to my post. I'm glad that you had a successful surgery and the pain wasn't too bad. I don't do well on narcotics either and try to avoid as much as possible. The suggestions about preparing are helpful and I will take note of. Good to hear you had your exchange and you are recovering. There's so much to think about especially since I haven't seen the surgeon yet, but it's nice to hear from other patients who have gone through this.

EastcoastTS

Veeder:

Here is a list for prep for surgery. (I found all the tips/tricks on BC.org so helpful. I was terribly well-prepared for surgery.)

https://community.breastcancer.org/forum/91/topics...

Veeder14

Thanks for the list, this is very helpful.

Icietla

Veeder14, has your surgery been scheduled?

Veeder14

No, not yet but I have an app't with the surgeon on 1/18 (instead of 1/29), app't moved up at my request. I imagine that a surgery date will be set at the app't. I'll let you the date when I find out.

Did you have your lymph nodes removed before or after surgery? Was there a sentinel node biopsy or how were the nodes chosen to be removed?

Snickersmom

Veeder - I'm jumping in again with just a few more thoughts. I had BMX in May 2017 and no reconstruction. I actually had the option of coming home the same day but chose to stay a night in the hospital. I was up and walking around that afternoon and only had pain meds for a few hours that night. I don't think I needed them - but took what they offered just in case. They sent me home with Percocet that I ended up getting rid of because I never took any of it at all. I was a bit uncomfortable but not really in pain. I think the discomfort was more from the drains than the procedure itself. The drains are just downright annoying. My husband took care of mine and I had one out after a week and the second one a few days later. I had dissolving stitches with glue over them and again, no pain at all. And I was able to peel off the glue - just like a sunburn! I thought it would hurt to have the drains out but I never even knew he did it until they were out!

I spent the first two days just laying around in bed but was so bored that I got up, got dressed, and started walking around. My arm movement was not all that limited except for raising my hands fully over my head. They gave me the exercises to do from the first week to a few months out and I started doing them after just a few days. It didn't take long for me to get full range back. BecauseI was Stage 1A, my risk of lymphadema is very low, but I am still careful about carrying heavy stuff with that arm. My daughters made me get a medic alert bracelet for that arm, because they don't want you to have blood drawn, IV, etc. in that arm where they took the Sentinel and Axillary nodes out.

I have several herniated discs in my back and I have not really noticed any difference since my BMX. I don't feel like it has made any difference in how I stand or walk, etc. I did get fitted for a mastectomy bra with the silicone inserts but soon realized that it just was not comfortable. Then I tried sports bras with pockets, and used knitted knockers with them. Those weren't comfortable either. So now I don't use anything and I am SO comfortable!! I did have to revamp my closet but now I have shirts that fit well and I am very comfortable with them.

My bathing suits are fine the way they are. They are tankini style and aren't fitted with anything in the bra area, so I don't need to wear anything in them.

I honestly found the physical effects to be no big deal. For me, the emotional and psychological effects have been much more difficult. I am still struggling and will probably be on Zoloft for a long time. One thing that I struggle with is when someone says "you are so lucky because you didn't have to have chemo and radiation and you only have to take some pills." Really?? I'm lucky because basically, I've had a double amputation?? Yes, I feel so blessed to be alive and to have had my cancer caught early. But it was still cancer. And just because I "only" have to take pills, that doesn't mean I don't have scars. I'm still struggling and I know I will be for a while.

Snickersmom

The Sentinel and Axillary nodes are taken out during the surgery. That's how to check to see if the cancer has spread out of the breast. Your lymph nodes are the guys that carry the cells out of the breast. The afternoon before my surgery, I had to have a shot of dye into the tumor (sounds a lot worse than it was!) That helps the surgeon to see exactly where the attached lymph nodes are. They first take the sentinel and axillary nodes. If there are no cancer cells in them, they will take a few more just to make sure. The biopsies are done right then and there by your hospital's pathology department.

All of this will be explained to you in great detail (or should be) when you meet with the surgeon and his nurse navigator. Make sure you take pen and paper so you can write things down. Also, write down questions you have as you think of them now so that you have them when you go meet with him/them. All of us can tell you of our own experiences, but at the end of the day, it is your surgeon and his team that will explain what they are going to do.

This is just a hiccup. You have a lot more strength than you ever thought you had. Don't forget that

Veeder14

Thanks for your post Snickersmom. I also have herniated discs with numbness going down to both feet, arthritis in the discs, and osteoporosis fractures, so I'm more worried about my back and neck than the surgery. That happened with my melanoma surgery also, I woke up with excruciating neck pain but my leg pain from the surgery was handled by the narcotics. I hope I can get up and walk and do as well as you did. I hope the side effects of the narcotics doesn't force me to stay in bed as walking makes my back feel better. I hope I can ditch the narcotics early on. I'll find out if staying the night in the hospital is an option. I live about 2 hours from the hospital so it's either a night stay in the hospital or nearby hotel. Get this~for the Melanoma surgery I was given the option to spend the night in the recovery room. I'm like, what?? that crazy chaotic place, no way, I stayed in a hotel overnight.

I was looking through my closet and donating some clothes as it's January. Some tops will probably fit me that don't now once I have surgery as I don't want reconstruction. I guess it's ok to get a mastectomy bra but would probably only use if I was going someplace formal and didn't want to look flat.

I'm interested in what the determining factors were for not needing chemo and radiation. These treatments are the ones that scare me. Some people say stupid things to others and you wonder why.

Veeder14

With my melanoma surgery, the sentinel node mapping was done a few hours before surgery. Only the sentinel nodes were removed during surgery. I'll have to ask if all of my underarm lymph nodes are going to be removed. Another question for my list.

I wonder how the body is affected with loss of so many lymph nodes. I had a horrible time healing from only two taken out of my upper leg.

Icietla

My lymph node surgery was done coincident with my first mastectomy surgery. There was the tracer injection procedure and lymph node mapping before the surgery. I understand they have a Geiger counter-like thingie in the operating room to locate the nodes. I think the Surgeon expected to find plenty of diseased nodes in my case.

You will want to ask the Hospital Personnel to do everything they can practicably and properly do to make the tracer injection procedure tolerable for you.

The lymph node/s surgery site may be the sorest place from your surgery, and sorest for longest, too.

You will be able to walk very soon after your surgery, but you should have an able-bodied person to assist you, or, in the alternative, you should have an ordinary walking frame for your safety. You must not fall! You will understand.

Veeder14

Thanks for your post Icietla. Yes, I can't forget the injection right into the biopsy site on my lower leg when I had the mapping before my surgery. OUCH. The doctors huddled together in the room I was in and another one behind me to watch the stuff they injected. Since it was my leg my head didn't have to go inside the scanner. I'm claustrophobic but since first getting cancer melanoma more than a year ago I've had to go in so many different machines and getting used to it. I try to do it without medication as the side effects just ruin my day.

I'm still a little confused looking at your information - did you have all your lymph nodes out on the right side under your arm? I will get someone to walk with me while I need it. Thanks for the suggestion.

Icietla

You are welcome.

Yes, all those nodes were from my right side axillary area. I do not know if all of the nodes in that area were collected. The one sentinel node was in one specimen container, and the other twelve were in another specimen container. I have had some soreness and what seems to be excess fluid (presumably lymph) in that area ever since.

The tracer injections -- I had five. There had been applied a thick coat of EMLA numbing cream and an occlusive cover put on the site a half hour prior to the injection procedure. I moaned through two of the shots, and I screamed through three of them. Then I wept.

Here is a discussion thread with others' experiences__

https://community.breastcancer.org/forum/91/topics/746169?page=1

Veeder14

Thanks for the link. You were awake for the lymph node biopsy?? You remember the nodes being put in containers? I had 5 tracer injections in my leg last time, it didn't feel good but I made it through. I bet the underarm is a lot more sensitive. I hope the excess fluid you have disappears. I had to have mine in my leg drained several times.

Icietla

You are welcome.

No, I was asleep for the mastectomy surgery and coincident lymph nodes collection. The Lab Report said that the Lymph nodes were in those two containers.

I was awake for the tracer injections procedure. It was painful beyond words. The tracer injections are done into the most sensitive part of the diseased breast. See that thread linked up there in my prior post.