But you don’t look sick…..

I dont look sickI can’t tell you how many times I have heard these words. Oh, I’m so glad you beat cancer, you look great! Since you aren’t doing chemo, your cancer is gone, right?

I’m not sure I can blame people. I live in denial myself. Once the pain in my back subsided and for the most part I had weaned myself off of pain medication, it was easy to live that lie. I take a total of three prescription medications a day (only two more than my pre-cancer days). I am able to work and live a fairly normal life with scattered doctors appointments. Basically I live my life as though I have a chronic disease such as diabetes or high blood pressure. Unfortunately, the chronic disease can turn into a terminal one at the blink of an eye.

I had a sad reminder of just how serious metastatic breast cancer can become last week. My appointments have always been positive spots in my month. A reminder that I am beating this. I had my lab work done the day before my appointment so that I could have the results when I met with my oncologist.

2019-06-26 CA 27-29My tumor markers every month have been improving, a sign that the cancer is taking a back seat for now. Until this month.

My oncologist normally has such a positive tone to his voice. Thursday there was a different sound and when he talked about my lab work he didn’t mention the tumor marker. I finally asked him for the number and he told me it went from just under 40 to just above 50. He also said that the number could fluctuate, so not to worry too much about it.

We discussed how I was already scheduled for a PET scan the following day and unlike the previous scan he told me he wanted to meet with me after the test so we could discuss whether I would have surgery on Monday. Again, a change from my previous appointment where he was enthusiastic about removing my primary tumor. He went from let’s do this to let’s see what the scan says.

2019-06-26 Platelets

It wasn’t until I saw the final results that I noticed a second lab that had jumped dramatically. My platelet count which had been improving to almost normal levels had also taken a significant increase, the second highest result since I first found out I had cancer in September. For those unfamiliar with what these labs mean, ‘A high platelet count may be referred to as thrombocytosis. This is usually the result of an existing condition (also called secondary or reactive thrombocytosis) such as: Cancer, most commonly lung, gastrointestinal, ovarian, breast or lymphoma. Anemia, in particular iron-deficiency anemia and hemolytic anemia.’

I was more lucky than others in my situation. I already was scheduled for a PET scan the following day so I didn’t have long to worry, but that night was one of the longest since this ordeal began. The last scan was one I was excited about because it would determine whether I was healthy enough to return to work. This one had a darker cloud over it. This one would show whether my cancer had returned. This time I was genuinely terrified of what it would reveal.

The wait following my test seemed like an eternity. The term ‘scanxiety’ is real. The wait is something I can’t begin to describe. This is another reason I absolutely love my oncologist. He fit me into his already busy schedule so that I wouldn’t need to spend the weekend worrying about the results. When you are already nervous, having a doctor that is compassionate enough to make sure you don’t have to wait is something I can’t appreciate more.

2019-06-28 PET

There is a lot of positives to be gained from this scan. It showed that the mets to my bones has improved quite a bit. Even with the positive, there were the words that spell out my worst fears, ‘a new area of activity in the outer left breast. New or recurrent disease is possible here.’ The tone of my oncologist’s voice returned to his normally positive sound. He was very impressed with my scan, saying that the new area was most likely ‘background,’ but either way the tumor would be removed a few days later and the improvement to my bones has been terrific. He did however admit that the dramatic change in my lab values has given him something to worry about.

As I drove home from my scan the breast cancer navigator called me and we talked about the test. I told her that for the first time I was reminded how quickly I can go from healthy to facing recurrent cancer. She said unfortunately that is something I will have to live with for the rest of my life. Cancer can rear its ugly head at any time. I can go from completely healthy to sick in a matter of months.

My week of ‘cancer patient’ continued into Monday. I had a lumpectomy to remove the tumor from my left breast. Due to the location of the tumor my surgeon couldn’t remove it using an ultrasound, instead needing me to have a wire marker placed by the radiologist using a mammogram. While this mammogram was much better than the last one (where I had spasms of pain running up and down my back and legs), multiple mammograms while placement was found still was not the most pleasant experience.

1-metastatic-breast-cancer-awareness-art-for-women-dark-nikita-goel

The surgery itself wasn’t too bad as it was done under a general anesthetic. My surgeon told me that everything went very well and my scar should be minimal and hidden. He also inserted a biozorb to help maintain the natural shape of my breast as well as give the radiation oncologist a marker for when we start radiation in a few weeks. I have been able to remove the larger dressing and the incision is covered by steri-strips so I am not sure what it looks like, but hopefully it will be as small as my surgeon told me it would be.

One more hurdle has been passed in this journey. Three weeks or so from now I will begin radiation therapy. Radiation was one of the things I had wanted most to avoid and here I am, getting ready to begin three weeks of five day a week external radiation treatments.

Most days I do my best to not to dwell, but I just want my life to be the way it was a year ago. I just want to go back to a life before doctors, surgeries, radiation and labs. I just want to go back to a life without fear or anxiety about whether I will be here six months, a year, five years from today. I just want to be me again.

It’s been a long week of ups and downs and I’m still processing all of it. Today I’m still a little numb just thinking about it. Today I’m feeling like the cancer patient I am. Hopefully tomorrow I will wake up and be able to go back into cancer denial again and just be the happy me I want to be.


Jennifer – Extensive mets to bones. Diagnosed de novo at 43 of ‘unknown cancer’ on 9/25/2018, official diagnosis of metastatic breast cancer with bone metastasis on 10/9/2018. Cancer won’t win. I won’t let it. Life’s too short not to fight for every minute.
Dx 10/9/2018, invasive ductal carcinoma (IDC), left breast, 1.5cm, Nottingham Grade 6, hormone receptor positive, ER+ (estrogen receptor)/PR+ (progesterone receptor), HER2- (human epidermal growth factor), BRACA- (genetic mutation), Stage IV, metastasized to spine, pelvis, sternum and right scapula
First CA 27.29 10/9/2018 83 (goal <38)
Hormonal Therapy 10/12/2018 Tamoxifen (Nolvadex, Apo-Tamox, Tamofen, Tamone) pills
Targeted Therapy 10/12/2018 Xgeva (Denosumab) injection
Hormonal Therapy 10/19/2018 Lupron Depot (Leuprolide Acetate) injection
Surgery 11/29/2018 Vaginal hysterectomy with bilateral salpingo-oophorectomy
First CA 27.29 post hysterectomy 12/10/2018 73 (goal <38)
Hormonal Therapy 12/11/2018 Femara (letrozole) pills
Targeted Therapy 12/23/2018 Ibrance (palbociclib) capsules
First CA 27.29 post medication change 1/10/2019 60 (goal <38)
CA 27.29 5/2/2019 39 (goal <38)
CA 27.29 6/28/2019 53 (goal <38)
Surgery 7/1/2019 Left breast lumpectomy With Wire Localization, Mammographic, Biozorb Placement
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A (scary) new development (part 2)

Cancer Word Map

The one constant with metastatic breast cancer is that just when you think you know where things are headed at the last minute you find out yourself on a different path.

Today I met with the radiation oncologist. I really do like her. She is straight and to the point. She is honest about statistics and facts. We discussed her role in my treatment plan and she broke it down in plain language to make it easier to understand.

That being said, I’ve been forced to re-examine everything I had been planning on. As my medical oncologist has said, the evidence remains inconclusive as to whether radiation will extend my life. She then told me that she has consulted with her partners and there is no evidence to support brachytherapy in my case and that it is only for early stage breast cancer. She said that while she would not be able to do brachytherapy, she said that we could consider external beam radiation. This would entail fifteen treatments over the course of three weeks.

As I drove home from my appointment things became very real. It’s easy to pretend cancer doesn’t exist when you are taking a couple pills a day. Three weeks of radiation and surgery are enough to remind you that cancer is there. It forces you to remember that yes, I really do have cancer.

The toughest part of this for me is I know this may or may not help me in the end. I am just afraid if my cancer were to return tomorrow and I hadn’t gone down this road I would blame myself for not doing everything possible. This might be the toughest point in my treatment plan so far and I would be lying if I didn’t say I am scared.

When I go to sleep tonight I am going to drift off and hope that when I wake up tomorrow this will have been a bad dream. Unfortunately the rational part of me knows that’s not the case. This is as real as it gets.


Jennifer – Extensive mets to bones. Diagnosed de novo at 43 of ‘unknown cancer’ on 9/25/2018, official diagnosis of metastatic breast cancer with bone metastasis on 10/9/2018. Cancer won’t win. I won’t let it. Life’s too short not to fight for every minute.
Dx 10/9/2018, invasive ductal carcinoma (IDC), left breast, 1.5cm, Nottingham Grade 6, hormone receptor positive, ER+ (estrogen receptor)/PR+ (progesterone receptor), HER2- (human epidermal growth factor), BRACA- (genetic mutation), Stage IV, metastasized to bones
First CA 27.29 10/9/2018 83 (goal <38)
Hormonal Therapy 10/12/2018 Tamoxifen (Nolvadex, Apo-Tamox, Tamofen, Tamone) pills
Targeted Therapy 10/12/2018 Xgeva (Denosumab) injection
Hormonal Therapy 10/19/2018 Lupron Depot (Leuprolide Acetate) injection
Surgery 11/29/2018 Vaginal hysterectomy with bilateral salpingo-oophorectomy
First CA 27.29 post hysterectomy 12/10/2018 73 (goal <38)
Hormonal Therapy 12/11/2018 Femara (letrozole) pills
Targeted Therapy 12/23/2018 Ibrance (palbociclib) capsules
First CA 27.29 post medication change 1/10/2019 60 (goal <38)
CA 27.29 5/2/2019 39 (goal <38)

A (scary) new development

I-am-not-a-statistic-mbc-2.jpg

The first time I walked (or should I say rolled since I was in a wheelchair due to the excruciating pain in my back) into my oncologist’s office on October 9, 2018 I looked as though my future was dim. I genuinely looked like a cancer patient.

At my worst I was taking 60mg of extended release morphine twice a day and two Percocet 10’s every four hours, often with little to no relief. I was bedridden, physically run down, and terrified about my future.

The initial treatment plan for me was palliative. The goal was simply to keep me as comfortable as possible.

I honestly felt like my life was over. If you would have told me where I am today I would have laughed at you. If you would have told me that I would be back at work full-time and almost completely off of any kind of pain medication (in the past three weeks I might have taken a Lortab maybe a total of three times) even though my job as a nurse is physically demanding I would have looked at you as though you had two heads.

In many ways I feel better today than I did one year ago, months before my diagnosis. I had been dealing with increasing back pain for longer than I can remember and had been living off of Naproxen and sleeping on a heating pad for relief. My oncologist told me at my last appointment that I need to remember that I didn’t just get cancer overnight and that there is a good chance my body had been fighting the early stages of it for a long time.

IMG_6936My treatment plan has taken a dramatic change. My oncologist has moved from a palliative course to a semi-aggressive one. He has moved from trying to keep me as comfortable as possible to doing everything he can to extend my life and quality of life. I’ve moved from a patient that wasn’t expected to recover to one that has the possibility of a more longer term chance of survival, even if the reality is that the cancer could always rear it’s ugly head whenever it feels like it.

This week is a very important week for me. Important yet exceptionally stressful. Part of my oncologist’s more aggressive approach is something that doesn’t often happen with a metastatic breast cancer diagnosis. It isn’t common to take a surgical approach unless the breast tumor is causing discomfort. The reasoning behind this is there is no definitive evidence as to whether surgery and radiation will extend overall life expectancy once the cancer has moved from local to metastatic.

Reviewing my oncologist’s notes from the beginning of my treatment to today is a complete 180º change.

  • Will treat with hormone based therapy since there is no evidence of visceral crisis. (October 12, 2018)
  • No local therapy for the breast (note: this means no surgery) without any skin ulceration, pain or other problems. (February 7, 2019).

2019-02-22 PET w CT Skull to Thigh-2

This all changed when I had my first PET scan on February 22, 2019. The findings surprised even my oncologist. No appreciable FDG uptake. Essentially the tumor in my breast had become dormant.

  • She returns with PET scan showing bone only disease…. Obviously improved with uptake on the PET scan actually less than expected. The other areas of previous potential adenopathy noted on her CT scan is resolved and she has very little uptake in the area of the breast. (March 7, 2019)

We briefly discussed surgery at my appointment on March 7th. The first mention since this journey began. It had always been ‘not a surgical candidate, not a surgical candidate.’ The PET scan changed all of that.

  • With good control systemically might consider treating the primary site. This would require a lumpectomy and followup radiation. (April 4, 2019 – ironically, the week I returned to work after six months off)

While my oncologist has been upfront that the evidence is inconclusive as to whether there is any survival benefit to local surgery, there has been some data to show the possibility of potential improvement and due to my age he felt it was an avenue that was worth exploring.

Cancer Word Map

Yesterday I met with the general surgeon to discuss my treatment plan. His report said that I am an ‘excellent candidate for a lumpectomy.’ Friday I meet with the radiation oncologist to discuss my radiation options. The goal is to do a type of internal radiation called brachytherapy. This type of radiation requires the placement of a catheter at the site of my lumpectomy a week after my surgery, then five days of radiation (twice each day). This is a huge difference from external radiation which would require a 4-6 week course of treatment.

Surgery is scheduled for July 1, 2019. My nerves are fraying but even though I realize this may or may not help me live longer, I feel as though I should do everything possible to be here as long as I can for my family.

So far I have been incredibly blessed with how my treatment has gone and I will have faith that this will continue. Cancer won’t beat me, I’ll beat it.


Jennifer – Extensive mets to bones. Diagnosed de novo at 43 of ‘unknown cancer’ on 9/25/2018, official diagnosis of metastatic breast cancer with bone metastasis on 10/9/2018. Cancer won’t win. I won’t let it. Life’s too short not to fight for every minute.
Dx 10/9/2018, invasive ductal carcinoma (IDC), left breast, 1.5cm, Nottingham Grade 6, hormone receptor positive, ER+ (estrogen receptor)/PR+ (progesterone receptor), HER2- (human epidermal growth factor), BRACA- (genetic mutation), Stage IV, metastasized to bones
First CA 27.29 10/9/2018 83 (goal <38)
Hormonal Therapy 10/12/2018 Tamoxifen (Nolvadex, Apo-Tamox, Tamofen, Tamone) pills
Targeted Therapy 10/12/2018 Xgeva (Denosumab) injection
Hormonal Therapy 10/19/2018 Lupron Depot (Leuprolide Acetate) injection
Surgery 11/29/2018 Vaginal hysterectomy with bilateral salpingo-oophorectomy
First CA 27.29 post hysterectomy 12/10/2018 73 (goal <38)
Hormonal Therapy 12/11/2018 Femara (letrozole) pills
Targeted Therapy 12/23/2018 Ibrance (palbociclib) capsules
First CA 27.29 post medication change 1/10/2019 60 (goal <38)
CA 27.29 5/2/2019 39 (goal <38)