May 2017 Surgery Group

ready2bedone

Newbiegirl, I was out of town for the weekend so I am just now seeing your post. First of all, welcome! I had my surgery 5 weeks ago so fairly close to yours. My PS gave me a very detailed packet with the timing for everything! He also seems somewhat rushed though when I see him for follow ups but his nurse is very good about answering my many questions I still have. You might want to try contacting your PS's nurse since they usually know the answers and are often better at communicating.

I had a BMX with tissue expanders and drains so my instructions might be somewhat different. I would guess that a lumpectomy would heal faster and not have as many restrictions. My PS did tell me that I didn't have to sleep in a bra after 4 weeks (I am currently a 34 D) so you may be able to stop that. I have to sleep on my back for a few months though, ugh! It's actually pretty uncomfortable on my side anyway, I tried for a few minutes while reading in bed. As for bras, I was told no underwires, but I imagine it depends on where your incisions are. Mine are below my breasts mostly, so that makes sense. You do need good support, but since I have alloderm mesh, I can get away with a very soft sleep bra most of the time. I had to hunt for something that had a soft band that came down lower than most and wouldn't irritate my incisions. It may be a bit of trial and error to find what works for you and your needs. My PS didn't give me specifics about bras. I suspect that was out of his realm as a man. 😀

I have weight restrictions for about 6 months since I have more surgeries for swapping out the expanders, creating nipples, etc. You may not have them past 6 weeks with a lumpectomy. I had a small lump removed several years ago and don't remember any restrictions after 48 hours. You might get.some better advice on the lumpectomy thread. Hopefully you can find someone who had very similar surgery who can share what their instructions were. Good luck!

MamaOz

so happy julie your chemo is going well !

you are on different regimen than i was , i think the adriamycin aka red devil that I had was the main culprit for all my gastric distress so perhaps the regimen your on is better.. my platelets were normal before but became consistently low after the 2 nd round , so I then was considered anemic it needs to be watched. and I took neulasta shots for low white counts the day after each infusion, but as I mentioned you are on different regimen

Are you just on cyclophosphamide ? Then will take taxotere? Or are you doing combo together?

I did adrmycin (red devil) and cyclophosphamide 4 rounds combo then only 3 of 4 of paxitaxel ( started causing neuropathy

Most oncogists are hemotogists as well.. im surprised yours isnt? As the bloodwork needs to be closely monitored which he obviously did as he accessed your previous records..

Best wishes for continued ease of symptoms..

I see radiologist next week to discuss my next tortureous adventure

JuliaJazz

Yes Mama Oz we are on different regimens.  Mine is Cytoxan (cyclophosphamide) and Taxotere (docetaxel) . I got off very easy.  I am feeling normal on day 6 and day 4 was really the only troublesome day with some bone pain. Days 3 and 5 I had a little discomfort but not much.  I have continued with my water aerobics classes and feel good. A nap now and then. I see you have finished your chemo.  Are you on any pills or anything?  Hope it is a beautiful day in the Keys.  It is here in Sarasota.

MamaOz

hey Julie , beautiful sunny ,hot day ..

I will start a version of arimidex after im done radiation

• So im ok with holding off..on the pill till Sept becaise those side effects are a bit alarming too. I have osteopenia so I will need extra monitoring thru it all and some intervenous bone strenghtening drug every 6 months ( more side effects)
• I am just starting to feel better from surgery and my hair is finally starting to grow back , it really just started growing a few weeks ago and I was getting nervous as I had finished neo adjuvent chemo in April..
• When it comes out it .. it literally comes out in clumps and I first cut it shorter then finally with several bald spots I had my son shave it with the hair trimmer this by end of my second treatment, although my tteatments were dose dense every 2 weeks .. then after chemo thought I made it with eyebrows in tact !! Haha ... well two weeks after I was done I got up one morning and they were gone! I really looked like a cancer patient then!! As if being bald wasnt a give away.. but i wore little turbans
• I had read it was possible.. but good news they have started filling back in as well .. these are little milestone blessings for those of us who go the full gamit ...chemo ,surgery , radiation , pills
• well my dear hope you and all our other friends herehave a happy 4th of july weekend

MamaOz

sunnyjay, thought I would check in to see how your doing? Hope well as havent seen a post in awhile

Mamao

JuliaJazz

MAMAoZ, Those of you who go the full gamut are really brave.  I guess when we don't have much choice, we just put one foot in front of the other and find the strength we need.  Blessings to you.  I am glad your hair is starting to grow back. I haven't lost mine yet but I will.   Hang in there with that radiation.  I am lucky that I don't have to have that at this point.  Have  great day.

MamaOz

julie , we all have our battle as you said, I was just wishing I didnt have to do all the treatments! Its like you just start feeling better and then you have to get your head ready for another whammy.. but so many of you have done it and pulled thru

Im just being a weeny...

JuliaJazz

MamaOz -We all need to b a weeny sometimes.  You get over it and go back to being brave.  My thoughts are with you.

MamaOz

thanks

sunnyjay

Hi everyone, Just checking in hoping everyone had a good 1st half of the holiday weekend! I have issues posting on my phone sometimes so my last post didn't make it on here. Anyway, here are a few updates... I had a bra fitting last week and it all went well. So happy to have something that feels somewhat comfortable. My insurance approved 2 post-surgery bras so I got a couple with pockets, so I can "expand" my right to match my left each time I get my TE filled. My PS also recommended a few Warners brand bras that I can get at macys, so I'll check them out after work.

I have had 3 PT sessions now, and my range of motion has improved so much. I still have tightness in my armpit whenever I raise my arm and also in the crook of my arm when i extend my arm out. She said I had some cording but I can't see anything so she must be able to feel it internally. I have my last session this week and will be sad since she has helped me not only physically, but also helped with lots of resources in my area. Neither my PS, MO and Nurse Navigator discussed these resources with me. I feel like I have to seek these out on my own.

This week I have my chemo teaching session and will start my first infusion in 2 weeks. Juliajazz, thanks so much for the information about chemo preparation. It has really helped! I think I will be getting the same regimen as you. I was trying to get a 2nd opinion, but all the information I have been reading points to chemo as THE recommended treatment for my situation. And my medical team has been wonderful up to this point, so I feel that I am in good hands.

JuliaJazz

Sunnyjay, I am two weeks more out from my surgery than you and almost all of my tightness in my armpit is gone.  So you have something to look forward to.  I didn't have reconstruction though, so that may add a little time, I have no idea.  

Happy to report I just got back from the oncologist with an A+ report.  I have had very few side effects so was hoping my blood counts had behaved also.  I have a low platelet count normally ranging from 90 to 104. ( I just learned that on the first day of chemo.  If my docs had ever mentioned it before it certainly did not stick in my mind.) On day 1 my count then was 92 and so (with some trepidation) the doc went ahead with the planned TC treatment..  Today, day 10, my platelets were at 104, equal to the highest in my history at my primary care doctor.  My white blood cells had been at 7.8 (good) on day 1 and on day 10 today were at 12.7 so the Neulasta certainly did its job.  I did have mild anemia, hemoglobin is at 11.4 today, down from 12.0 on day 1.  Not too bad though.  Doc feels I should be good through all four treatments even if the levels drop some.  I asked her if any effects are cumulative.  She said I might have more fatigue.  I can live with that.  For now her instructions are to live normally for the next 11 days.  I don't need to avoid crowds or anything.  So I am thanking my lucky stars. My next infusion will be July 14th.  Hang in there everybody.  We are rocking this!

MamaOz

great news Julia!! Great attitude!I Have my radiation appt tomorrow so will update later..

Best to you as well sunnyjay

Happy 4th to all

MamaOz

julia, hope your chemo is going well.. I met with the rads Dr and we set a date for July 27 for my simulation, as I still need to get my arm and chest muscles more relaxed they are still tight but Im working on it with the PT

Anyway , did you mention that you were making foobs out of the wash poofies for your swimsuit? If so can you explain your method? Im going to. visit my daughter next week up in NY since I have a delay starting the radiation and they have a pool , I am a small person 5' 100 lbs

So even though my former boobs were B cup I am now comfortable with small bumps so using the whole poof might be too much.. did you sew them into a pouch? I found a tankini top with pockets

Mamaoz

JuliaJazz

Hi MamOz.  Yes thanks, my chemo went very well.  Round 2 is next week so I will hope for similar.  The swim poofies are easy to do.  You actually snip the tie that holds the poofie together.  Then it is a long tube of netting.   You roll up the tube tightly until it gets to the depth you want and then place into the  the tankini  bra cup - a few pins might help.  Then you hand sew it in.  Then you make another roll and place it next to the first and do the same until you fill the whole shape.  I think it is easier to make the first roll the deepest and place it in the center of the cup and then make slightly smaller ones going out. But it doesn't really matter.  On the suit pictured, I did one that way and one straight across.  You stitch the rolls to each other and to the edge when you get to it.  You will have smaller rolls than I did for my double D cup.  One large swim poofie should do the job, unless for some reason you need slightly more.  I have done four tankini tops. I do water aerobics 4 or 5 times a week. One top had a high neck and that was all I needed to do.  For the others I stitched in a modesty panel that covered the poofie material just to make it a little more comfortable and at the top the panel was sewn on to the shoulder straps at the right height that it gave me some more coverage if I bend over. In other words it was no longer a V neck but went straight across. I chose to have no reconstruction. Others probably wouldn't need that.  I hemmed the top of the piece of fabric before I sewed it in. If that doesn't make sense let me know.

My hair is starting to release so the top of my head won't look like this for much longer.  

MamaOz

thanks Julia

I saw another panel but everyone was confused as to how to do it thanks for the photos I will attempt to give it a try..

I also chose no reconstruction ..

as for your hair .. they say it starts falling out about 2 weeks in so your right on schedule .. i cut it shorter twice then buzzed it finally 4 weeks after my first treatment I was doing dose dense every 2 weeks so it was a week after my second round .. I had several bald spots ...and it looked rather pathetic..

mine came back in very slowly it was almost 2 months after last chemo ..April 10 that I saw any regrowth really start

its now a soft thick fuzz about 1/4 inch high its salt and pepper and I have stopped wearing scarves..

My hair was brown with scattered grey before but its ok Im 63 and a new grandmother!! And just thrilled its coming back!

I will let you know howmy poofing goes!

JuliaJazz

Two weeks since my chemo and as advertised, hair is definitely starting to come out.  I'm not stressing about it too much, thanks to the fine examples on these forums.  I had very thick hair to start with so it doesn't look to bad yet. I will keep it as is til it gets too thin and then get it cut to an inch for awhile.  Her is a pic of the pile of curly grey

hair from my shampoo this morning, just for your amusement. Have a great weekend everyone.

sunnyjay

JuliaJazz: thanks for the visual. Haha Thanks for your updates since it's giving me an idea of what to expect. I start on the 20th and I tried to time my first infusion so that I still have most of my hair on Aug 5th, which is my sister's wedding. I have really thick, dark Asian hair that has been falling out a bunch over the last few years (due to perimenopause) but grows so fast. I cut my long straight hair to a short bob after surgery since I had a hard time putting it in a ponytail. It has already grown to almost shoulder length in just 6 weeks! So I'm hoping to be one of the lucky ones who keeps some of it intact (knocks on wood). Nevertheless, I'll be going wig shopping next week.

Julia, The one thing you're doing that I'm not is the water aerobics or just consistent exercise in general. I'm pretty sure that has helped you with managing your side effects. I know I need to be more active, but sometimes just walking bothers my chest muscles near the expander. So I have to walk at a very leisurely pace, and I don't feel I'm getting my heart rate up. I used to do water aerobics many years ago and that school no longer offers it. But I'll figure something out. I've walked around the local park a few times during the holiday weekend so I'll keep that going.

JuliaJazz

Sunnyjay, your surgery was two weeks after mine and I had no reconstruction, so those are two differences.  There are special free exercise classes here for cancer survivors. I wonder if there are any in your area. I would go if I didn't have my water aerobics. They would know how to modify the activities for where each person is in their journey. Keep on keeping on.

MamaOz

Well julia, since you shared hair!! Heres mine a week after starting chemo in Jan and now 6 months later

Still working on the poofies

JuliaJazz

Looking good MamaOz.  It is growing back for sure!

MamaOz

I know ! Yeah!!

we need to focus on the positive!! And keep moving forward!

MamaOz

Julie , i made my inserts from only one poofy.. I just want small bump , i used pieces from an old swimsuit to enclose the poofie part then stuffed them into the pockets .. so we shall see how it works in a few days.. its kind of nice to discuss something silly..

stay positive everyone! 🌺

JuliaJazz

MamaOz.  Sounds perfect.  Happy swimming!

kae_md99

quick question ladies, i will have my sentinel node mapping where dye is injected into nipples prior to anesthesia. will applying emla on the nipple help with the pain?thanks.

Tpralph

Kae - it helped a little with me. it only stung for a few seconds. I had two injections same breas

Herculesmulligan

kae.....I didn't use any anesthetic cream for the injections and it was fine. It barely hurt at all.

NotVeryBrave

My BS prescribed Emla crea - put a glob of it over nipple and aereola and cover with plastic wrap with a bra over that. It's important to use a lot. If you just rub it in then it will wear off. Should plan on having it on for 45-60 minutes before procedure.

I didn't feel the needle at all. The medication stung for maybe 3 quick breaths. I cried with relief - I was so worried.

Good luck!

Heidibird

I wish I had known about the Emla cream before my injections last year. They did 4 in the breast. If they weren't holding me down I might have kicked someone. Sorry, but mine hurt like heck. But I am also what my husband calls a "candy butt." The poor doctor kept apologizing each time he injected me.

sunnyjay

kae_md99: I wasn't informed about the emla cream. But the radiologist that performed the injection used lidocaine prior to injection. I was really scared, and the nurse that prepped me wasn't very peppy in her "pep" talk beforehand. I was glad she offered her hand for me to squeeze. The first injection I didn't feel, but the second one was a little sting that didn't last long at all. Good luck!

kae_md99

thanks ladies