Oh come on now....

[kvogler]

Well I'm almost 5 years out now and was looking to get off the 6 month plan to a yearly follow up but last summer I got a benign fluid filled cyst in my reconstructed breast that had to be surgically aspirated. It was very painful. Now, I've got shingles. Guess where? Yep, right along that reconstructed breast. It's painful and has aggravated my already screwed up nerves in that area. More pain. I'm going to tell my oncologist that if I can I'd like to stay on a six month follow up plan since that area still seems to be "active" with problems. Wondering if they do nerve blocks for that area. All this stuff has really gotten painful.

[TiffanyS]

I’m sorry to hear that you’re having problems after almost five years of being NED. I think that continuing with a six month follow up with your doctor is a good idea. I hope things get better for you soon.

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12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6 Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
01/17 – A second “pimple” shows up on chest wall, as well as a small lump under the skin. My doctor thinks it’s scar tissue and will monitor it for now.
0/17 – Started to develop severe back pain – worried the cancer has spread to my spine
03/17 – Third CEA blood test and CA-15-30 blood test – awaiting results.
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
03/17 – Second brain MRI scheduled

[tricia keegan]

So sorry and agree on the six monthly check ups and hope your pain eases soon.

[Mtngrl]

Sorry for your troubles.

Hang in there!

Amy

[Laurel]

Shingles are so PAINFUL! I am sorry you are experiencing them. I supposed you have been offered the antivirals and now are in the "gotta ride it out to the end" stage of shingles which is just misery! I doubt that your Onc will deny your request which is more than reasonable. I wish you a hasty resolution to the shingles saga. Shingles and cancer both come straight from the pit of hell!

[Carol Ann]

This totally sucks! I am so sorry. I hope they are gone soon and yes, I agree with everyone else that staying at visits every 6 months is a good idea!

Carol Ann

[Lien]

After my surgery I had a huge infection in my scar tissue. It was very painful and I worried about it a lot. Then my oncologist told me that having an infection in the area actually may be beneficial, because all that immune system activity mops up free floating cancer cells. He explained it in a more scientific way, but it is 13 years ago and I've been allright since. Had to have some benign cysts aspirated too, but that went ok too. It was painful, though.
Hope you look back on this in 13 years and think - like I do - I was in a heck of a lot of pain, but I'm fine now.

Jacqueline

[kvogler]

Thank you gals for the support. Especially Lien, I needed to hear that someone had pain and got out on the other side. Gives me some hope to keep pushing on! Love this support group!