The Cancer Chronicle

Seriously, after having a double mastectomy you start feeling a little secure thinking you are finally free and clear. Even though that surgery was at the behest of a recurrence of the breast cancer I’d been diagnosed with six years previously, I truly was surprised when the ophthalmologist broke the news to us – you have cancer in your eyes.

I’ll recap for those who haven’t read the post on Facebook. The rest of you feel free to skip ahead…

July 11, 2019 – edited for brevity.

The third week of May I began suffering terrible migraines and had a shadow in my right eye. I ended up at the retina specialist thinking I had a torn retina. After a full day of angioplasty, ultrasound and many many photos, it turns out I have lesions in both of my eyes. Tiny little tumors, specifically, metastatic breast cancer.

An MRI and a PET scan later reveal many (13?) small lesions (cancer) on bones in my shoulders, in lymph nodes under my collar bone and breast bone, on four vertebrae, and on my pelvis and femur, besides the lesions in both my eyes.

I am fortunate in that I have the best medical institutions at my disposal. I am now, thanks to Jen, under the care of a team of doctors at Mass General Hospital.

Do not believe the appalling statistics concerning MBC. I am not a statistic and they do not necessarily relate to me, or my prognosis. Please read Jay Gould’s essay “The Median Isn’t the Message,” which sums up my attitude on that subject.

No worries, I’m not going anywhere just yet.

July 15, 2019

That catches you up to this weekend’s turn of events. I began experiencing a constricting ball of pressure in my mid-back. After exploring the usually litany of ailments I suffer from, I came to the conclusion that the pain must be from one of the tumors.

Today’s visit with my radiology oncologist, Dr. Rachel Jimenez, confirmed as much. She has arranged for me to have a short course of radiation, five doses. I’ll be going to MGH Danvers, thankfully avoiding the drive to Boston for those six visits.

My medical oncologist, Dr. Dejan Juric wants to start meds asap. We are awaiting blood biopsy results. The clinical trial drug will have to wait til I have bone biopsy.

I’m not sure if it is being put off until I have the radiation or not, but we are still awaiting a biopsy app’t. They will be going in to my hip for that one. They need to type my tumor (previously ER+, HER2-) in case it has changed/mutated and they need to do a further study for a new receptor panel.

The two drugs I know I’ll be taking are Fulvestrant (Faslodex) which is a medication that blocks and damages estrogen receptors that is sometimes used in the treatment of metastatic breast cancer. And CDK 4/6 inhibitor palbociclib (Ibrance). I’ll tell you about the third clinical trial drug when I find out if I can take it. I’ll write more about the drugs when I start them.

I also have an app’t with MGH’s oncology ophthalmologist to check in and get him on my team. For now, I don’t need any other treatment but the hormone regime for my eyes.

Basically, I have an incurable disease that we’ll treat as a chronic illness. As each symptom appears, it will be evaluated and treated. Currently, I have breast cancer tumors that will be treated with a cocktail of drugs that could put me in to remission, or partial remission or in the least, halts the progression. The radiation will kill the lesion causing me pain.

Then we wait.


Comments

  1. Lynne, I love you so much and I am so sorry that you’re going through this.

  2. Lynne – I am here cheering you on and am provide additional moral support through the ups and downs. Also know that I want to provide a space to lean on for others in your family. I am simply a phone call away and they have my number.

  3. Lisa Shields says

    I am here, woman.
    I still remember meeting you, my first week in Ipswich.

    I will cheer with you, and cry and anything you think can help.

    You aren’t alone. Reaching both hands to you… And holding on tight.

  4. I hate that you’re having to go through this, but I’m crossing my fingers for the trial. And hopefully, the radiation will help with the back pain!

  5. Rebecca Morrissey says

    I read Gould’s essay. Very excellent. Thank you for sharing all of this so that we can try to understand what you are going through and how best to support you. Sending love and hugs, and lots of shouts of, “Go Lynne! You’ve got this!”

  6. It does make me nervous to hear about the retina when just this year, I also had a shadow appear in my right eye and off to the retina specialist I went. Vitreomacular Traction, now complete, they say. However, the shadow and see-through specks that look like black pepper remain. I’m so sorry yours was what I feared mine could be, and that I am okay otherwise. Also having chronic (silently invisible) disease, I understand the strength you have though. It changes a person to go through such trials. Very much looking forward to reading about your journey. I know I could be there in a heartbeat myself. My father’s whole family has had cancer, nearly all have passed, my aunts both of breast cancers as well. I’m keen to my own statistical likelihood and like you, proclaim NOT! Thinking of you…

    • I’m so very glad you are okay Cindy. The paranoia over every ache and pain is taking some getting used to. As is trying to keep worst case scenarios from seeping in and causing panic. Once you start playing the “what if” game, well, you simply can’t allow yourself to do it or you end up bawling on the floor defeated. I try to be practical dealing with what is in front of me as it comes.

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