May 2017 Surgery Group

sunnyjay

troyryans - I went back to work at 3 weeks. Then again, I had a UMX with no complications other than pain. I have a desk job mostly email and phone work. I made sure I didn't take any prescribed narcotics for 24 hrs since I had to drive to work. The first week I was at work for 4-6 hours a day and was able to resume regular hours the next week. For me, driving was hard. It hurt whenever I looked over my shoulder.I don't know if I would be able to drive with BMX. I use my non-operated arm mostly and have a small pillow between the seatbelt and my chest.

If you can, ease in to work as much as possible and find someone to help with workload. Good luck to you!

Lordhelpmetoo

troyrayans, I had BMX may 25. I have not gone to work but if feels like I have with my kids. Wishing you a great day at work tomorrow. Take it easy

Herculesmulligan

troyrayans....I had what sounds like a similar surgery to yours feb 1. I went back to work after 5 weeks. In some ways it was hard due to the cording and fatigue, but the reaching and pulling involved in my job actually speeded my recovery along, I think. It helped stretch/snap the cording.

sunnyjay

I finally met with my MO who said my results were great and the surgery most likely removed all the cancer. Yay! But then he recommended tamoxifen (due to ER+) and T & C chemo 4 times every 3 weeks (because tumor was 2.5cm, considered not small). He didn't think radiation was necessary but referred me to a RO for consultation. He also showed me a model online of the 10 yr survival rate for someone with my same situation. Without the treatment the survival is 91%, and with the treatment the survival is 95%. This model does not figure for recurrence so he still encourages the adjuvant treatment.

I shared my path with a friend of mine that works for a pharma company that is working on a drug for Her2+ patients. Since she works with a team of oncologists she offered to share the path results with a couple of them. Both said I didn't need chemo because the spread to the lymph node was only 1.5mm.

So now I plan to seek a formal 2nd opinion. After the recommendation by the tumor board for chemo, I was set in my mind that I had to do this. But given the "model" and the opinions of the other MOs, I'm wondering if going through 12 weeks of side effects is worth the additional 4% survival rate.

Edited to add: I didn't ask my MO whether there is a model for longer survival rate... I'm only 45 so I would like my survival rate to be at least 30 yrs!

JuliaJazz

Sunnyjay. my diagnosis and recommendations very similar to yours but I had a test called a mammoprint which showed that my tumor was more aggressive rather than less aggressive.  My doc showed me a 5 year survival of 75% without the T&C chemo and 88% with it based on the test so that is a no brainer for me.  This test only shows 5 year survival rates. I am 68 but would prefer 20 more years. My parents are both in their 90s.  I figure the few months of chemo will be over soon and I will feel better knowing I did everything I could.

MamaOz

troytyans, sorry to hear your having a few set backs

I thought there's a fmla one year job and insurance protection thats a federal law ..but then I work for a larger company and they have been great

Lordhelpmetoo

sunny jay, I had 4 cytoxan and Taxotere as well. It's hard but doable. But give it deep thought and for sure get your second opinion. I'm 43

Lordhelpmetoo

Juliajazz, will you be getting 4 TC

JuliaJazz

Yes, LordHelpmetoo, I will be getting 4 TC, three weeks apart, starting this Friday.

MamaOz

julia,

Good for you .. we really have to throw everything we can at the darn buggers, we are similar diagnosis except for nodes,

I did my chemo prior to surgery 4 A/C then 3 taxol unfortunately didnt work that well so Im glad you and lordhelpmetoo are using something different..

Its not fun but its doable.. and you have a great spirit!

Now Im working on my range of motion on my right arm my chest is tight and have cords in arm that need work...before radiation in july , seeing MO thurs about starting arimidex

Wishing you and everyone well..

JuliaJazz

Thank you MamaOz.  We can do this!  I've been doing water aerobics and my tightness is getting better.  More fun for me than  regular PT exercizes but those work too.  I have had a lot of improvement this week.. My surgery was a couple weeks before yours.

troyryans

MamaOz, the FMLA only applies to companies with over 50 employees, we have less than 10. My employer could let me go with no reason during the medical leave and cancel the insurance, which would leave me high and dry. So, I am at his mercy for the most part. My surgery was on May 11th, and he wanted me back by May 30th - I know, difficult to believe. To get five weeks off was a gift, let me tell you. I don't even know how I will get the time off for reconstruction, but will cross that bridge when I get there.

It was difficult to work the day. Painful to drive 30 minutes, even with a pillow. The motion of moving my neck and where I held my hands on the steering wheel put a lot of strain on my upper chest - you really don't think about the muscles you need to drive with until after surgery, let me tell you. Sitting at my desk and working on the computer was ok, but found by 3p that I was hitting the wall. Went home and promptly fell asleep (which explains my very early morning post). Besides the physical side, I found mentally I am just not there....the work didn't interest me at all and I could feel the stress climbing up just like I had before I left for surgery.

I believe I have some deep thinking to do for the next steps in my career and moving forward. I pretty much knew this before the surgery, but needed to focus on the health aspect first.

Thanks for the response - I will tell everyone to NOT rush going back to work. My situation is different in that I am concerned I could lose my job if not there, but if you have the opportunity to stay at home and recuperate, do it as long as you can.

Kathy

MamaOz

julie, thank you. I may take you up on water aerobics if I can find a class, I live in florida as well but dont have a pool, perhaps if I stay at a hotel a few days here and there thru radiation they will have pool.. I will have a 3 hr round trip commute each day , so I am exploring my options..

I just got a rebounder , its supposed to help with activating the lymph system , hey its worth a try !! as its so buggy and humid outside down here in the keys , makes outdoor activity in summer tough

And troyryans, just a bummer your employer isnt understanding.. and yes I am extremely fortunate to have my job benefits..

perhaps they will allow you partime for awhile? Perhaps try a walk or stretch ... find a quiet place to breathe deeply and meditate for 10 min during your lunch break but make sureto eat!! hang in there .. I am 4 weeks post op and know I would have a tough time ...

NotVeryBrave

troyryans - I'm sorry that you had to return to work so soon. It must be hard to feel like you're being held hostage by your employment. Sometimes I think we need the push of situations like that to move on to something better. I just wish you didn't have the added stress.

On the plus side - I started to feel much better after I began PT and was more active. The first time I drove was just locally about 2 weeks after surgery. It was harder than I thought but seemed much better the next time I was behind the wheel. I hope today is better!

ready2bedone

troyryans - I feel for you! I retired just a week before I got my diagnosis, which was incredibly good timing since I didn't have to deal with the stress of work on top of everything else. Can you carpool to work or take Uber or something so you don't have to drive? Sounds like the driving is the worst part, and that should get better soon. I understand the brain fog though. I am off pain meds but would have a hard time doing anything that required me to actually think!

I am almost 4 weeks post op from BMS & TE placement. My BS gave me a sheet of exercises to do, but the timing is unclear and I wasn't sure if I need to wait on them because of the expanders. I got my final drains out last week. At what point did you start doing range of motion exercises? I can lift both arms above my head if I do it slowly and gently, but if I do too much (as in just a few times), I get really sore and it keeps me awake at night. So I wasn't sure if it is too early. I suppose I need to ask my PS, but was wondering what the rest of you with similar surgeries have done.

For the most part, pain-wise, I am doing pretty wellat this point except for the area right between my breasts where my incisions under them end and that areas really stings and hurts with a very sharp pain especially in the evenings and at night when I am trying to sleep. My bra doesn't rub there but even the slightest touch just about sends me through the roof. Is that nerve pain? I have a Rx for gabapentin and can take that without the awful constipating side effects of pain meds if that would help. Anyone else have this sort of pain there?

NotVeryBrave

The PT's had me only doing the exercises that raised my arms to shoulder height until the PS gave the go ahead at about 3 weeks. Then they had me gradually increase how far I raised them - basically going up until I felt the "pull" and then trying to go a little higher the next time or hold it a little longer.

I still have a lot of sensitivity across the upper portion of my chest and between the breasts. Also on the sides where the drains were. The PT's explained that the nerves were irritated with the surgery and need to kind of "re-learn" so to purposefully stroke those areas with various textures of cloth to desensitize. I think it has helped. Human nature is to avoid touching those areas, but that can make it worse.

I returned to the PS yesterday for follow up re: the infection. He thinks things look good so it's kind of like "take your antibiotics and keep your fingers crossed" since there's no objective way to determine if it's working. The swelling has gone down, the pink areas have faded, and things feel better. But it's hard because nothing ever feels "normal" to me.

Lordhelpmetoo

notverybrave, it seems as if your infection is healing. The redness is going away and that's a good sign. Keep exercising arms. I YouTubed some and been trying those on my own

Lordhelpmetoo

readytobedone, it'll be 4 weeks since my BMX with tissue expanders and have had one fill. My ps said for now to only stretch my arms on the wall. I think it's called the spider walk. You can also YouTube videos and do a few and stop when you feel discomfort. I also got me a mini trampoline to gently bounce on it for 10 minutes. It's supppsed to drain and clean lymphatic system

ready2bedone

Thanks Notverybrave & Lordhelpmetoo - I see my PS today (forgot about that) and will ask him which exercises on the sheets they gave me I can do now. I am surprised at the range of motion I have already, but I guess that is because I didn't have the TS under muscle. I will also get fitted for a sleeve for lymphedema since I will be flying overseas in a couple of weeks. No sign of issues so far, but I want to keep it that way! I'll try bouncing a little on my toes since I don't have a mini tramp. Sounds like a good idea as long as my bladder cooperates!

Desensitizing the nerve endings makes sense, even though it is counterintuitive. Every part of me doesn't want anything to touch my skin at all in those areas! If I could go topless all day every day I would! Wondering how long it will take for this to go away? It feels like when I fell down as a kid and skinned my knees and they stung really bad for a few days until they scabbed over. But worse and it's lasted a month so far!

NotVeryBrave

I had my surgery 6 weeks ago and the sensitive areas are much better now. I still have some but not nearly as bad. It seems like it felt like burning at first and then more like stinging. Only a little sore now.

MamaOz

lordhelpme

I just got my mini tramp for the same reason I really enjoy it, still have cords under my armpit into upper arm, therapist works them out ,, but like a rubber band the next day they come back.. very frustrating.. still have radiation coming up next month soI need to be able to get my right arm over my head

I

Newbiegirl

I am new to this site, I wish I had found it months ago; by reading different threads here I have had many "ah ha" moments, like why I find myself crying more than usual for example. This site has given me sisters here who have had the same experience!

I was diagnosed with BC Nov 20th, 2017. I am a triple negative so I have to undergo the "full meal deal," with no follow-up medication for prevention. I started with Chemo first because my tumor was 4.7cm and it was invasive and fast growing so it was believed that I would have a better surgical outcome if the tumor shrunk. I did Chemo from December to end of March with AC and Taxol.

My BS decided that a lumpectomy was sufficient so she preceded with a r-sided lumpectomy. Because I was a DD size cup they could take generous amounts to get the margins. The breast was reconstructed & reduced so I could avoid larger dose radiation, and the left breast was reduced for symmetry. I am very happy with the results.

I started Radiation on June 2, 2017 and am scheduled for a total of 20 treatments. I am presently having some wound healing issues to the rad side. I am told the wound will heal after rad but my biggest complaint is the discomfort of the bra on the incisions.

This sounds so trivial compared to other posts so forgive me for my complaints, but I don't know who to ask.

The plastic surgeon did a very nice job but he is not good at explaining aftercare and seemed to be in too big a hurry to answer my questions. He told me to read my discharge instructions. The printed material I was given after surgery from the hospital did not include much detail on care after 6 weeks. I have pretty much been discharged from his service so I feel like I am on my own. I am now 7 weeks out from surgery and this bra that I am wearing hits the incisions which are still tender and my plastic surgeon says to just find one that is "more comfortable". I have been using the internet for aftercare info and even that does not address my concerns: How long do I have weight lifting restrictions? How long do I wear the bra day and night? When can I resume sleeping on my side? What kind of bra am I suppose to be wearing? What has your PS ordered for a bra?

JuliaJazz

My first chemo infusion (Taxotere and Cytoxan) went smoothly this afternoon  Three more to go!  We arrived for my one o'clock appointment and the nurse drew blood.  After awhile Dr. Eakle. my oncologist, came in and said they needed to draw it again because my platelets were low  While they did that she called my surgeons office who is a part of the Intercoastal Group and so could access my primary care physicians records for the last 12 years.  It turns out that for all that time I have had  low platelet count, usually ranging between 90 and 100.  Normal platelet count is 140. The second time they too mine it came up to 92.  My white blood cell count (my immune system) was very good. So the doc said we would go ahead.  However, during this first cycle we will watch my platelet count carefully and if it gets too low we may have to adjust the dose or timing or future treatments.

The funniest thing was that I was icing my hands and feet and the insulated lunch bags that I thought would be waterproof, weren't, so my DH had to clean with paper towels periodically and at the end we wiped the floor with one of their blankets.  They are the right size for my hands and stand up, so I think I will just add a large Ziploc baggie inside them next time and put my hands in that.  The booties I bought for my feet worked well.  

I feel fine this evening.  I had Varubbi, a very expensive anti-nausea drug and will take Zofran every twelve hours for the first three doses. I will save the Compazine for if I actually feel nauseous.  I will be taking measures to avoid constipation.  Now to make a baked potato for dinner. 

Good luck to everyone else no matter where you are on your journey.

MamaOz

so glad chemo went ok julie !

Good thinking on icing hands and feet

my last 3 were pacitaxil and I had some neuropathy develope in hands and feet so didn't do my 4th but its gotten better

Good luck!

NotVeryBrave

Newbiegirl - Glad you found us but sorry for the circumstances! As for your questions: I had double mastectomies so my info is probably different from yours. My PS lifted all restrictions by about 3-4 weeks. I just started sleeping without a bra a couple of days ago at 6 weeks - feels strange, though. I've been tilting toward the sides to sleep for a while. I use a tiny pillow under the breast on the side I'm leaning towards. I ordered some very stretchy bras from Amazon - they were called "vermilion" something with a front zip. They're minimally supportive but comfortable.

Everyone is different and so are their doctors. If you can't get straight answers from yours - I guess go with the consensus on here!

Lordhelpmetoo

juliajazz, I can't imagine how they never informed you of your low platelets. Rest a lot and keep very hydrated.

JuliaJazz

Thanks Lord help me.  I am pushing the water, usually with some Crystal Light added.

Kacop

Hi, folks. I haven't posted much, but wanted to reassure some of you that there is a light at the end of the tunnel! I see where some of you are and I can remember feeling that this would never end. To recap my last year: I was diagnosed with DCIS in my right breast in August of 2016. One small mass less than a centimeter showed up in all testing - mammos, MRIs, ultrasounds, biopsy. I felt I had won the lottery in that I was lucky enough to find it so early (I had just t urned 40 and was doing all the precautionary tests my OBGYN suggested). I had a lumpectomy in September and thought I'd be doing radiation and hormone therapy immediately following. However, things did not work out as the doctors and I thought. My BS, who was amazing I might add, did tissue samples while he was performing the lumpectomy. Of the nine samples taken, four came back positive with DCIS. I was devastated - and terrified, too. All the testing I'd had done showed nothing else. So, I opted for a bilateral MX (the left side was considered prophylactic, but I wasn't about to leave it when I had no idea if all testing missed cancer there too). I had a BMX in November with tissue expanders to start the reconstruction process had my tissue exchange surgery in May and have one more week until I am completely cleared. I've learned so much from this forum. I'm so thankful I had great surgeons. It sounds like some of you have had horrible experiences! Activity levels shouldn't be questionable...communication is key here. They told me at what week/stage each activity was acceptable. The BS and PS were very conservative with my activity level - not even wanting me to go through PT- and I am thankful for that since I have healed so quickly with so little complications.

I can't add any insight with chemo and radiation. I will say for those of you dealing with just the aftereffects of surgery, time is the best healer - both physically and emotionally. Try to find your new normal because this is an experience that profoundly changes you.

sunnyjay

Juliajazz: thanks for sharing about your first chemo treatment. I have had low white blood cell readings in the past, and my oncologist is also the hematologist I saw about this issue previously so I feel that I'm in good hands. I'm feeling more comfortable going with the treatment plan that was recommended, but I plan to still get a 2nd opinion and just waiting for insurance to approve the referral (I'm with a HMO).

Where did you get the information to prepare for your treatments? Was it from these forums? My MO said I would be going through a preparation session but I wasn't sure if there was a place I could get additional info to prepare myself.

JuliaJazz

sunnyjay, one of the places I looked was on the main site under chemotherapy.  At the bottom of the page they have a list of tips from community members for chemotherapy.  It is a PDF download.  Here is the webpage to look on:  http://www.breastcancer.org/treatment/chemotherapy.    I do not have  hematologist but if my platelet counts go down too low I guess I will have to get one.  I am hopeful they will go back to what is normal for me.

I am feeling well on day 5.  Day 4 was the worst day for me with some bone pains.  I had my chemo Friday late afternoon and it was really three days later (Monday afternoon) that was the worst.  However it was quite bearable.  Maybe because I have pain in my hips and knees from arthritis I am used to this.  Anyway, the question was when I got up this morning on day 5, would it be worse or better and, lucky for me, the answer is better.  Best of luck to everyone as we move through this journey.