Hi

Jamie30

I just wanted to introduce myself.  My name is Jamie and I am a 30 year old mom of 3 boys (12, 10, and 7) and have been married to my WONDERFUL hubby for almost 13 years.  I was diagnosed on April 11th with multifocal invasice ductal carcinoma in my left breast.  I had my mastectomy on May 26th with tissue expander placement.  They found .2mm in one lymphnode so right now everyone is on the fence with chemo or not, waiting on the oncotype to come back to move forward since I am too close to surgery to start tx anyway.  I know I will be on hormone treatment but nothing else yet.  I go back on June 15th.  I am doing good so far but I get really frustrated at the feel of the expanders and not being able to sleep the way I want too.  I still do not have feeling in a few areas.  I am able to life both arms above my head but not the same way as before.  Can I expect this to ever resemble normal?  I can raise my arms but I  have a hard time shaving my underarms which drives me bonkers!  Any hope for that as well??  I have a lot of questions and wanted to start here so maybe I can find some answers!

ProudMom_Wife

Hi Jamie30,

Sorry you are joining the club, but WELCOME.  The folks here are very helpful and can very supportive. 

It sounds like your doctor(s) are treating you as an individual since they are waiting on the oncotype results before proceeding with a chemo recommendation.  That is good.  Don't hesitate to get a second or third opinon once you get the oncotype results.  The better informed you are the more comfortable you can be about your decisions as you move forward.

Those TEs are annoying.  I know it is frustrating, but be patient, it takes time for the body to heal and you will be able to sleep on your sides again in time.

Be sure to ask your doctor about a referral to a Lymphedemia Specialist since you had a MX and a few lymph nodes removed as a precaution.   Take it easy with your stretching and getting movement back, it will improve a little bit every day.  I am seeing a Physical Therapist/LE and it has helped me.

Once again, welcome to the club that no one want to join. 

mdg

There is hope!  I did the exercises and stretches provided by my breast center for post mastectomy.  I too have TE"s.  I did the exercises/stretches twice a day faithfully even when they hurt.  I also worked with a physical therapist that had experience with mastectomy patients.  I had my BLMX on 1/27 and I have TE's filled to 510cc's right now.  They do not bother me at all.  I have no tightness in my chest at all.  I exercise 5 days a week.  My exchange surgery is in 2 weeks.  I do believe that I feel so good from my dedication to exercise and stretching the chest daily.  Obviously you need to do what your surgeon will recommend or allow.  If they have not provided exercises or stretches, ask for some or ask for a referral to a physical therapist that has experience with mastectomy patients.  If you have more specific questions, PM me.  Good luck! 

CoolBreeze

Most women don't have my experience, but I'm two years out from mastectomy and no way near normal yet.  I would kill to sleep on my stomach with my arms over my head but I can't.

What is not unusual is to be numb.  That may always be that way - I'm numb from my cleavage to my scapula.  It really is irresponsible for doctors not to mention that may happen.  I also have phantom itching that hasn't stopped for two years.  

But, I have had shoulder problems ever since my surgery and cannot raise my arm above my waist.  I had a cortisone shot recently which helped quite a bit with the excruciating pain, and I should have another in June.  I highly, highly recommend you do exercises daily to limber up that arm, or you might end up like me.  There are specific exercise online for shoulders that you should do.  I think some of those pamphlets they give you after your surgeries have exercises in the back.  I wish I'd done them, maybe I wouldn't be in this situation.

They cut off a body part, cut open muscles and stick devices in there and then wonder why our body functioning changes!   

DiDel

Jamie you just brought me back to those sleepless nights with the expanders...uuugggh you are right they are miserable. I am the same as you but righty was the sick one. The good news is it does get better. I swear I had NO pain after my exchange surgery because it was such a relief to get that darn expander out of me!! I had it in from 12/09 to 09/10. I did do chemo after my onco score. I was very doable and was over before i knew it. I did 4 rounds of TC started 3/17/10 and done on 5/17/10 and it took about 3 months for me to feel back to normal. My worse SE was fatigue. They give you lots of meds to fight the nausea. The most important thing after your mx is to keep those arms moving!! I did my exercises just like my PS instructed..I slept on my back with pillows allllllll around me (all 6 of them!) AND two under my legs. After a few weeks of that position its the only way i can sleep.

I am happy with the results and I have AMAZING cleavage!!

Hang in there ... the worst part is over! Good luck with your future treatment plan ...Oh and who cares about shaving your underarms!! If you do chemo that is the only good thing..no shaving under arms or anything else for that matter!

Feel free to PM (private message) me anytime if you have questions. You can ask anything!

Diane

Jen42

Hi Jamie,

I had my bilateral masectomy with immediate reconstruction (saline implants) on May 27, just a day after your surgery. I was extremely lucky to be able to skip the expanders part of the whole process.  I understand surgeons have different rules.  I am under strict instructions not to raise my arms above shoulder height yet. My armpits are starting to look like a man's...hairy...I hate it ! But will have to wait awhile longer to shave them. I started a thread a few days ago titled "how long do I have to lie on my back?" cuz I'm so frustrated at only having the one position to sleep in, and having issues with "pressure points" on my butt and heels, pain waking me up. Ladies responded with tips to help the situation...everyone is so nice here. I think you will get a lot of questions answered. I am having a hard time believing almost 2 weeks have gone by since the surgery, how about you? - Jen

Jamie30

Thanks.  I have been doing the exercises daily because I am so scared of being stuck.  I was doing them in the hospital bed the night of my surgery lol.  Proudmom_wife...My doctors are awesome. I have been going to REX UNC for all of my car.  My surgeon, ps, onc, and cancer center are all on the same rd.  I have been AMAZED at how comfortable I have been with them.  I come from a smaller town with a crappy hospital and driving the extra 30 minutes to a bigger area is so worth it.  I was drugged after my surgery and kept looking at the nurses and cnas and telling them how nice they were, lol.  MDG thanks for the exercise advice...I will def keep that in mind.  I have been moving as much as I can but plan on getting out and walking more. I would love to be able to do Zumba soon.  Thanks.  Cool Breeze..I am sorry that you have had this experience...I will keep all that in mind.  DiDel...sleeping is a pain because I have slept on my tummy and side for so long but I do make a nest with all of my pillows.  I hope I too can get use to that soon!  I joke around with my hubby about chemo and having the best brazilian wax EVER, lol.  I try to find the best in everything and not having to shave would be rather awesome...lol.(even tho I know other stuff will not be so awesome!)  Thanks so much!!!!!!

Jamie30

preview is there for a reason, lol.  I just noticed I put "all of my car".....should be care...duh!

Psal70

Hi jamie30' I hope you are healing fast from your surgery. You will get used to the expanders and you will get used to sleeping on your back, the feeling will never come back completely, I stopped shaving my underarms after my surgery because I was afraid to cut myself since I did not feel anything there but now the sensation is back on the top, I was waxing my underarms for almost 2 years and I recently started shaving again, but honestly it is not very comfortable because it is hollow , you can either wax or get laser hair removal. As far as lifting your arms above your head it will get better with time but you will always have a pulling feeling under your arms, keep stretching it helps.

sundermom

Jamie -I'm 37 with five kiddos. I had a BMX in December and it took me about 8 weeks to get my full range of motion back.  The tissue expanders are a pain in the butt!  I had my exchange surgery on May 10th and experienced immediate relief from the discomfort caused by the expanders.  As far as the numbness, I still have some areas (esp. in the underarm areas) that are somewhat numb.  I found Aleve to be a very effective pain medication.  My PS also prescribed Ativan so that I could sleep. 

Tammy