December 2018 Surgery Support Group

Misha I am so sorry and cannot even imagine what you are going through. 6 months of having your entire life turned upside down is so unfair.

I agree with wigging that getting the drains out is a pivotal moment. After researching online you need to have less than 20 (urine cup) for multiple days for a drain to be removed. My doctor followed this guideline as well. Hoping you will get yours out soon.

Tomorrow marks 3 weeks for me and I am doing really well, except for fatigue. Today I went and walked at the mall and was surprised at how tired I was after. I'm hoping to go back at about 4.5 weeks from surgery date.

My PS for whatever reason is adamant about no ibuprofen for 6 weeks. I have no idea why and I should ask next week when I see her again.

My BS called me as soon as he had the pathology report just as he promised he would because he understood the anxiety of waiting. My surgery was on 12/14 and he called me on 12/19. I would call if I were you.

This whole experience has caused me to reflect on all that my sister endured from 2005 when she was first diagnosed until she passed in 2009 at the age of 52 and the incredibly difficult road she had. I am grateful for the advances that have been made since then.

Wigging I too packed up all my old bras. I'm not sure I felt liberated though. I'm still trying to come to terms with my new foobs. I went from a D cup to a C cup per request and the shape is great but they still look and feel so fake to me. Perhaps some future fat grafting and nipple tattoos will help with the look and feel.

Misha hoping and praying for good news on your pathology report and that better days are ahead.

SDwoman I can relate on the fatigue! I went back to work yesterday. I got there at 9 and by 2 pm I was spent. I had today off for my PS appointment...back to work tomorrow and then I have made it through my first “week” haha. I also started driving yesterday...I’m feeling like a pretty independent woman all of a sudden!

I can also relate to the fake feeling. I’m trying to accept mine as part of my body the best I can. It’s getting a little easier. Mine are about the same size as before just much rounder! I did buy a couple of the cute little bralettes that I never could wear before and they look really good, just have to make sure and get ones that cover my scars. I will possibly have fat grafting and likely have nipple tattoos as well at some point down the road. Although the idea of tattoos there sounds quite unpleasant at the moment! Yeowch!

so sorry it’s been a rough day and rough 6 months at that. I too haven’t had chemo yet so hard to know how you feel. I am still in a lot of nerve pain under my arms and where they took the nipple. It looks like they left maybe a 1/16th of the nipple and anything that rubs it send me through the roof. I put bandaids over it and wear a tank top under my bra because the rubbing hurts so bad. I am on gabspentine and Motrin and some nights when it’s bad I take my pain meds from surgery. I feel like a wuss because I didn’t even have aMastectomy like most of you and I am complaining. I have a high pain tolerance too so I don’t know what’s going on.

The waiting is so hard! You are right. I think New Years and the holiday put everything behind. They keep pushing out my Oncotype text results.

Like wigging said you are not alone! I am cheering for you and us too! I am praying that this passes for you soon Misha. I am so grateful we have a space to vent and say how we really feel and that we have people here who know and have been through this. Sending you a big hug Misha

I hope you get your drains out and pathology report soon 💕

Misha one thing I might suggest is to take some pain med before you go to your PS. I thought the drain removal was quite painful. It doesn't last long, but if you can make it better with a little pain med why not. You poor girl have 4. I only had 2. You will be amazed at the length of tube that is removed! I swear it's about 8 to 10 inches.

thinking of you today Misha and hoping you get your drains out.

Oncotype text results are delayed another few days arg

HPFULL sorry to hear your test is delayed. My oncologist delayed my follow up appointment a whole week because he said the Oncotype tests are slow over the holidays. I’m sorry you’re still having so much pain! Have you had the painful area looked at recently?

Yay for getting drains out Misha! It’s quite an experience, isn’t it???? Yikes! I had one doctor on each side pulling them simultaneously so that was quite interesting as well.

Monday will come soon and you’ll be feeling so much better to have all those horrid things out and in the biohazard bin! 😊

no the area hadn’t been looked at yet. I go on the 14th. I spent a bunch of money at target for things I hope will help... silicon pasty things, lidocaine Nubbinh cream another type of bra.

Wow guess I am not the only one with the oncotest waiting. Sorry that they had to postpone your appointment wigging.

So glad you got a couple drains out Misha. That sounds crazy painful to have them pulled out! Yikes

Misha-iI actually didn’t mind the two sided pulling out of the drains! It took less time! Haha! They took out two at my one week follow up and the other two at my 2 week follow up.

HPFULL I’m not exactly sure but I think my “magic number” might be 15? I go back on the 15th for the results. My appointment wasn’t actually moved, the doc just scheduled it a week later than normal to be sure that the results were back. I was glad at the time but now I’m getting very ready (but not ready) to know. Do you know what your “number” is? I really hope your pain settles down for you!

Happy New Year folks! You gals are so wonderful and welcoming - thanks for being so supportive to each other. I got my drain out on Wednesday and hallelujah. However, I guess the scar tissue under the arm and the numbness of the area still make me feel like the drain is there. It’s like I have a phantom feeling from the drain. Bleh.

Although I’m not fully healed, I got anxious and wanted to get going on this “new normal.” I went and got fitted for a prosthesis today and bought a few new mastectomy bras and even a swimsuit (no idea when I will actually be able to go swimming, but what the heck). My remaining boob is so small (right side was always a nearly A cup except when I was pregnant/nursing), that even the smallest size prosthesis for my left is a tiny bit bigger. Oh well! Hopefully, no one is staring that long at my boobs to notice!

I didn’t realize that insurance would pay for bras too (although mine only will pay for 2 a year - sometimes they will pay for 3), so that’s nice (although since the new year just started, I may have not met my deductible just yet).

No pathology report yet - like you gals, sounds like everything is delayed due to the holidays. Hoping for next week ! I am hoping they will do the Oncotype test as well, but I was wondering if that isn’t automatically done with the first round of pathology tests. I’ll probably get a referral to an oncologist next week.

How’s everyone’s physical therapy on your arms? I know a lot of you did reconstruction, but for anyone that didn’t, has anyone gotten range of motion back yet?

welcome Calimom 😊 Maybe because the tumor was so small the didn’t order the Oncotype? They have something on this site about qualifying factors for the test. I would think you would be a candidate. It’s awesome that you don’t need chemo

Strange question for you ladies who had BMX with reconstruction. Are any of you experiencing like a sunburn or friction type burn sensation? On both breasts in the areas where I do have feeling I have this strange feeling, kind of like the pain you might get if you were to rub a minor sunburn.....if that makes any sense. It's not red or warm at all. I also have it on the outer portion of my right breast and up along my bra strap. Since that part is rubbing it really is bothersome and ended up putting silky fabric to reduce the rubbing or make it softer. Maybe nerves repairing themselves?

Had my Lumpectomy on Dec 20th. Still feeling pains and some large lumps around the site. Anyone else still having pain? I'm not sure what to expect. I was thinking this wouldn't last so long.

Also, BS called me the day after surgery to tell me path came in and instead of DCIS (results from biopsy) I have LCIS which is non cancer. Yay for Me! I'm thinking. Yet a bit confused that this new result overrides the first and just hoping that I get the correct care. The marker that was inserted during the biopsy migrated to the skin surface, so I question that they took out the correct location. I won't see the surgeon for a follow up until Jan 22nd. Any opinions or similar situations I'd love to get feedback.

DX- Nov 8 - DCIS Stage 0

LMX- Right Breast Dec 20th with LCIS results.

Hi freezer! Welcome. Not cool for your surgeon to make bay watch reference. Sorry that happened. I am not sure about draining. What did your surgeon say?

Queenbee that is fantastic news 🙌

Mymommysgirl. Thanks for the nursing pad tip! Today I tried silicon scar tape and a tight soft sports bra and actually had some relief.

SDwoman I didn’t have BMX but I had reconstruction where they cut from under my boob to my back and flipped the tissue. I have that weird sunburn feeling too, so maybe it’s nerve pain. I hope you get some relief

Hi All,

Wiggin, my reconstructive surgeon says she likes to wait for 12 weeks after the TEs are completely filled before doing the perm implant surgery. She wants to be sure that everything is totally healed...I am kind of hoping that she will decide we can do it a little sooner, though. I think my final fill may be this Wednesday!

SDWoman, I have weird electric flashes and sharp aches in my TE breast and that nipple - especially at night when I am trying to sleep - uggh! I am going to try the nursing pad solution.

Mary, thank you for posting - it makes me feel better to know that someone else with similar pathology was also told that they didn't need the Oncotype DX. We are so lucky, and I know what you mean about trusting and accepting - I am definitely trying to calm down and trust, and I do trust my doctors. I still can't help but wonder exactly why we are skipping the test, though, so I will probably bother the MO and ask again, and make the office tell me exactly WHY I don't qualify.

Re the Phantom drain pain - my drain site holes are also sore and that whole area itches...I had tape sensitivity. This my 15th day home from the hospital, and I am feeling muchhh better than I ever imagined, though. Going to see Bumblebee with my husband and kids soon - yay! I hope you all are having a good Sunday!