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Stage v- a hard to swallow fact
After months waiting I finally got to see the breast surgeon hoping to have my local skin recurrence removed- was told that I am clinically stage v because cancer has metestasized to skin even though it is local.
It came as a shock and I have to admit its very disheartening. Living with the same symptoms and diseases seem thinking I am stage 3 feels so much better than being told I am stage v. Would I rather not know it? Or by knowing it I will be even more determined to take better care of this freaking cancer.
Many things came up to my mind when I left the surgeons office. But mostly came to mind was I am dying and I need to make arrangements ASAP. Then I realized nothing has really changed except that I was just given a clinical dx. I have to say that the surgeon and nurse are great people.
I wish I had the same surgeon in the beginning but I couldn't afford it while I had HMO with access to only preferred provider. I felt I should not have rushed for reconstruction I should have had a non skin sparing mastectomy. But again I might have had a distant mets had I not been on the medication for recurrence. There are just too many ifs- water under the bridge.
I don't want to share the news with anyone but you my her2 sisters. Only YOU can understand my fear and anger and sorrow. How did you get beyond the stage v dx and move on with a full life- working full time and raising young kids. My 6 year old asked yesterday if I am feeling better. She knows I have an booboo and I hate to let know the big C word.
I can't tell my mom and bf either. It doesnt make much difference but to depress them. I am just thankful that you guys are here . So I am moving on with electro radiation for possible residue tumor cells as my surgeon does not think surgery will benefit me. I still don't understand why it can't be treated the same way as IBC since they are basically the same- diseases in lymphatic system.
Love to you all!
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1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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