September 2017 Surgery Group

Had my 2^nd post-op appointment with PS subsequent to my final exchange. He asked me what I thought and, of course, I told him how unhappy I am with the results. He had me first put my bra on, then my blouse and said he can certainly see why I'm unhappy.

The plan for now is for him to prescribe the pentoxyfillene and vitamin E but he says he needs to consult with a radiation oncologist to figure out dosages, etc. as he's never prescribed them before. I told him not to bother with my RO as she absolutely refused to prescribe it as it wasn't "indicated" and God forbid she would think outside the box for one second. He said he's glad I told him that because that's who he would have called first and he said he wasn't surprised by her response because she's very "dogmatic" and by the book. He's going to consult another RO from a different hospital instead. He was hesitant to prescribe the oral meds and only wanted to do the cream but I will insist on both. If he won't prescribe the orals I'll go to my family practitioner and get it from him. Failing that I'll get my naturopath to prescribe it.

If those meds don't make any or enough improvement then he said our next step is to try to keep lifting the left side little by little but not for at least a year. He has to be careful because, due to the mastectomy, the breast doesn't get blood flow from below it like a regular breast would.

At this point I'm glad I have a plan to try to improve the results and for now I can live with camouflaging for a year or two – there are lots of flowery/busy prints in my future. Plus, I have now had to put off getting new kitchen counter tops for two years in a row due to our out of pocket expenses piling up so in the intervening years I'm getting my darned counter tops! I'm getting my life back!

Hi Ladies, I'm not new to this site but am to this group.  I had a mastectomy (can't believe I'm saying it) September 26th.  Was wondering if it's normal considering it's almost 8 days now and I still feel very weak.  I mean I get up each day but I don't do much.  I am not taking any pain meds, just coping with the drain, doing arm exercises and am  an emotional mess.  I will see my surgeon next Monday who will refer me to an onc.  I was already through a lumpectomy, diagnosed in 2015, 9 months of preventative chemo and 3 months of radiation that I finished in April of this year.  Weeks later upon my 1st check up, a Dr. came running in the room during the sono, saying he saw something suspicious.  I told him that according to a radiologist, it was just a cyst that was seen/recorded prior to the lumpectomy.  Unfortunately it wasn't which lead me to this surgery.  I feel floored, a horror on top of a nightmare that I was ready to get out of, take a vacation etc..  So due to that mistake, it's been 2 years of this, which I thought was gone, but no, left there until last week. Any advice for physical and emotional healing right now?  I was taking Exemestane which I know is needed, pathology 95% estrogen but they told me not to take it until I resume with their Dr..  I changed my diet and my cosmetics to mostly natural.  I also fear more treatment may be coming, though I will not know until I see him, plus the Onco test.  I'm grateful to be alive but getting tired of this running my life.  I did not do reconstruction (maybe in the future), just wanting to be clear and cured!  As far as I know from the biopsy pathology, this one that was left in me was ER+ & PR+ and an 8/9 on the Nottingham scale, much higher than the 1st which I know is not good.  I can't believe this happened and I haven't even had the nerve to look at myself yet. 

MFPM:

Exhaustion after 8 days is completely normal I think. I was not "myself" with regard to energy level for a month or more. It took time. I agree with Raven. I feel part of the issue is anesthesia recovery. REST and don't feel badly for having to rest. I just tried to get a lot of protein, slept a lot when I needed to but also walked when I could to get my energy levels back to normal. And I read a lot on this site about recovery.

I'm so sorry about the missed tumor and lengthy journey you've had. I get you -- I've only been dealing with this since Dec. but I'm tired of breast cancer and breasts in general myself at this point. Again with Raven: can you ask your doctor or nurse navigator/surgical center about support? Mine had a social worker who we could reach out to. Also a therapist on the survivorship care office side. Many people have asked their doctor for an anti-depressant to take during this challenging time. I took something when first diagnosed to help me sleep.

You are not alone in this. Take one day at a time. One breathe at a time. You will get through this.

Staples out. I'm pretty proud of my healing. Any tips for getting the barium contrast down for my CT tomorrow?

QueenTess. You and I have close surgery dates. What has helped me has been doing something that lowers my anxiety everyday. Knit. A shallow bath with a good book. I hope you hear results soon. It's not easy. I had my mom take me to superstore today (I'm also in a cast, non weight bearing ankle fracture) and I suddenly broke down and needed to go home. I'm exhausted tonight

Raven4mi & Eastcoast TS, Thank you for the support.  I've been questioning myself, why am I feeling so woozy and weak, figuring I should be better.  I'm not a super active person to begin with but not up to walking the dogs or just doing simple things out of the house.  At least I did get out twice locally via a ride for a few minutes, that's it, knowing I can't tolerate more just yet.
  Yes, the missed tumor was seen in 2015 along with the other one but the radiologist Dr. at a hospital decided that it was just a cyst, not biopsying as ordered.  I am somewhat bitter since had he done so, it would've been removed during the lumpectomy, simple as that and now I don't know where I stand in terms of it being left there, the pathology so worse than the other etc., after almost 2 years worth of going through this, with treatment.
  I'm not quite sure how I've been doing all of this except for others' Prayers since I don't consider myself a strong person but have just been doing what they tell me so far.  As for support, there's really nothing local and my hospital is in Manhattan, depending on rides in horrible traffic conditions.  I will look again to see if there's anything closer but as far as I know, no.  I don't have much support via close family or friends so I basically feel and am alone too much.
  I'll continue to move slow and try to do little things to get back to my normal self or close to it for now anyway.  Again, thanks so much for reaching out and much luck to everyone!

MFPM:

I get you about the NYC traffic. I used to live in Astoria and traveled into Manhattan for work. Yikes on many days of the week.

However, there is also phone support through American Cancer Society and others. They have survivors to talk to I'm pretty sure. Google and see what is out there. Maybe just having someone to talk to about this (in person sort of) will really help.

Thinking of you!

wonderwoman386-- how wonderful that you can pick up your 5 month old once again!!

Glad you are getting good results from your physical therapy!

How are you doing?I'm kinda in the same boat as you & I'm so scared!

I'm 41 in the last 2 weeks I went in for what I thought was a routine mamogram well it was abnormal! Long story short I have left 15mm stage1 triple positive then right 13mm stage2 triple negative. I met my surgeon meeting oncologist next week... How did u do with chemotherapy? Im supposed to start a new job at the end of the month.

I have to do chemo then dbl masectomy.

I hope you have a speedy recovery!!

wonderwoman, i picture you picking up your baby and i am smiling and in awe.

Mamafelice, glad you are doing better. I cannot wait to use lymphedema pump again. I am even getting a minor surgery on my good arm (sentinel biopsy only) to be able to use the pump on my good arm as well as bad arm. I am what they call flattie. No bra all the time. I may wear mastectomy bras w forms on rare occassions.

Take care sisters.

Wonderwoman. Nothing like the healing feel of snuggling a baby against you 💜. How was your first chemo? I meet with my MO on Oct 18 for the plan. I'm terrified...

DodgersGirl, I was supposed to start radiation the end of October, but when I saw the radiologist on Wednesday - exactly three weeks after surgery - he said he wasn't satisfied with the way my incisions were healing, and he sent me back to my surgeon. So I saw the surgeon yesterday, and he said I'm just a slow healer and will need another 4-6 weeks before starting radiation.

My biggest concern is that I really need the radiation to be complete by the end of the year, as my very-high-deductible insurance plan resets on January first, and I really don't want to have to pay all of those out-of-pocket deductible expenses again in a just few months. So I sure hope I start healing more quickly!

Isn't it unfortunate that we have to perform an insurance dance in order to receive the best and most affordable care. But, we don't want to fool with infection!! I worked with a woman 20 years ago that had BC and passed away due to an infection at one of her incision sites that she neglected to bring to the docs attention. It was all so sad. I could have started chemo next week, but asked to start another week later because I want to ensure I am totally healed from surgery before my immune system plummets. Always be your own advocate!!

Maybe ask if the radiologist can pro-rate your treatments and bill you all at once in 2017. See if there is a financial advocate at your hospital that can help you with such. Maybe if you have to record some in 2018, the hospital can bill you a negotiated rate. Writing out loud here to generate ideas for all of us to share re all our medical bills. I almost passed out when I saw the bill for my BMX surgery. Thankful for insurance coverage on that! I too will have my oopherectomy in the new year with the new deductible to be met and will be talking to the financial person for help.

MamaFelice, thank you for the suggestions. If it looks like radiation treatments will spill over into the new year, I will definitely bring this up with the radiologist.

Joyseeker, I envy Canada its sane health care policies!

What would my bill be? Mamo, US, biopsy, mastectomy with two night hospital stay, two trips to day medical for drains and staples, chest X-ray, abdomal US, CT scan, bone scan, one apt with nurse navigator, two apts with social worker at cancer centre, script for Ativan, ciprolex and a sleeping pill. I haven't even met my MO yet. Cha Ching 😳🤑