What is a Cancer Journey?

Where does a cancer journey begin?

How does a cancer journey start?

Does a cancer journey begin with a nagging symptom like pain?

Can a test for something else begin a cancer journey?

Does cancer lurk in the shadows and take its victim by surprise, or does it follow a family line?

The answer is yes to all the above.

Just like any trip, a cancer journey is different for each person involved. Two people can go on the same trip to the same destination yet experience the event differently. While one person is terrified of heights, the other cannot get enough of the view from high atop the mountain.

And so, a cancer journey is never the same even if two people have the exact same diagnosis.

So then when does a cancer journey begin and what does it look like?

Let me explain by telling you about two people; a husband and his wife who each had cancer.

The husband noticed a flaking lesion on his right forearm and pinky finger. The skin flaked off only to return. He went to the dermatologist who didn’t think it was cancer but did a biopsy anyway. Sure enough, it was cancer, squamous cell cancer to be exact.

This is how his cancer journey began.

For the next step on his cancer journey, the dermatologist removed more tissue, this time removing all of the cancerous lesion.

The husband now goes every six months for a skin cancer checkup. He required no further testing or treatment.

His wife on the other hand had breast cancer. Her cancer journey was much different.

Let’s follow her cancer journey to see where all it took her.

Her cancer journey began with pain in her right breast. She had fibrocystic breast disease which caused painful lumps to appear and disappear in her breasts.

This lump was different though. It began more as an ache that didn’t go away. Sometimes she barely noticed the ache, sometimes the ache was quite pronounced.

The mammogram she had that year was negative, so she thought the fibrocystic breast disease was just acting differently. But the ache persisted.

The lumps came and went, but this particular lump didn’t go away. After a while, her breast began to change shape. She realized what was going on.

Here is the rest of her story about her cancer journey.

I noticed the lump in my right breast had become solid. It did not go away as all the lumps eventually did. I called my PCP to get an appointment. He took one look at my breast and sent me for a diagnostic mammogram which is a more thorough examination than a yearly screening mammogram. (Read: Is There a Cancer Test?)

The first stop for my husband on his cancer journey was a flaky patch of skin. The first stop on my cancer journey was pain, a change in the character of the breast lump, and eventually the altered shape of my breast.

My husband’s cancer journey was a relatively short trip. The dermatologist confirmed the diagnosis of squamous cell skin cancer with a biopsy. The only other stop on his cancer journey was also the last. The doctor performed a minor surgery in the office to remove the rest of the cancer and stitched up the wound. Once the area healed, he was cancer-free. He makes a side trip to the dermatologist every six months but has never had another stop on the cancer journey.

For me, the cancer journey has been much longer and has taken many more stops along the way.

The diagnostic mammogram revealed a lump in my right breast, so the next stop on my cancer journey was more testing. I had an ultrasound done on my breast which indicated the size and dimensions of the tumor. The ultrasonographer also checked the lymph nodes in my right underarm where more tumors were found. I did not know there were tumors in my axilla because I had never felt anything there; no lumps, no pain.

Next, I had a stereotactic biopsy done on the lesion. The radiologist inserted a special needle directly into the cancerous tumor and suctioned out small samples of the tumor which were then sent to the pathologist to determine what kind of cancer it was.

From there I went directly to see the surgeon for the first time. He examined my breast, felt the tumors, and decided that I needed chemotherapy as the next stop on my cancer journey.

He told me I needed to have chemotherapy before surgery to shrink the tumor. By doing this, he would not have to remove as much tissue in surgery which would give me a better outcome.

My surgeon called the medical oncologist on the phone. He told him what was going on and sent me directly to his office.

The medical oncologist examined my breast, felt the tumors, and prepared to begin chemotherapy.

As if this cancer journey had not been enough of a thrill to this point, this is where the fun truly began.

My cancer journey continued with lots of testing.

I had multiple tests performed to find out where else cancer might be living in my body. These tests included:

Blood work

I had several different vials of blood drawn for many tests.

• I had a complete blood count to serve as a baseline to check for anemia before starting chemotherapy. Also, they drew blood for a complete metabolic panel to check the electrolytes, again as a baseline before starting chemotherapy.

• Other labs included: genetic testing and biomarkers to see what was feeding the tumor. My cancer was being fed by estrogen.

Imaging

I had several different imaging tests done:

• First I had a chest x-ray to check for anything abnormal that might be in the lungs or bones of my chest.

• Second I had a PET scan to see if cancer had spread anywhere else in my body. Thankfully it had not.

• Third I had a breast MRI. Now that was different. For this test, you lie face down on a table that has holes cut out for your boobs to dangle through. Because something showed up on the MRI, I had a biopsy done on my left breast. Fortunately, that lesion was not cancer.

• Next, I had an EKG done to check my heart for any rhythm problems or electrical disturbances before starting chemotherapy.

• After that, I had an echocardiogram done to check the size, structure, and function of my heart. Chemotherapy can sometimes cause problems with the heart.

I went back to the oncologist. Everything was in good order for me to get chemotherapy.

I continued on my cancer journey.

I met the rest of my cancer care team before starting chemotherapy. The intake nurse explained what kind of chemo I would receive, how often I would receive treatments, some possible side effects, any symptoms to be aware of, and when to call the nurse or doctor with concerns.

From there I saw the financial counselor who reviewed the cost of treatments. She offered to help us get financial assistance if the need arose.

The surgeon inserted a port in my chest for chemotherapy for the next stop on my cancer journey.

A port is like a giant IV that he inserted under the skin below the collarbone, then he sewed the skin back over it. The port has two ends. The one end has a little well where the chemo drugs go in and the other end is an open tail that inserts into the large vein under the clavicle where the chemo then goes into the bloodstream. This port can stay in for many months and it keeps the chemo nurse from having to start an IV each time you go for treatment.  Also, because chemo drugs are harsh on the veins, it is safer to infuse the drugs into a large vein instead of the smaller veins in the arm which can become irritated or collapse.

Not everyone needs to have a port put in since there are many types of chemo, the frequency of chemo treatments, etc.

Chemotherapy

My chemotherapy regimen consisted of IV medicine given over several hours every two weeks for four months. I had blood work drawn before each session to make sure my hemoglobin and white blood cells were high enough to tolerate the drugs.

The day after each chemotherapy session, I went back to the cancer clinic to get a Neulasta™ injection to help keep my white blood cells level up to help ward off infections. There are other ways to receive this medicine, but I chose to go the next day for an injection.

Once a month I had an ultrasound done on my right breast to see how the tumor was responding to the chemotherapy. The tumor slowly reduced in size.

After completing chemotherapy, I also got another PET scan. 

I suffered side effects from the chemotherapy drugs.

They include:

Nausea

• Even though they gave me medication to take days before, during, and after each chemotherapy session, I still had nausea most of the time. The first evening of chemotherapy was the absolute worst. After that, I figured out which meds worked the best and when to take them, so the nausea was tolerable from there on out.

Fatigue

• I felt fatigued. Not only because of what my body was going through; but also from not sleeping well. The hot flashes didn’t help any either.

I tried different temperatures and different beds in different rooms, but sleep evaded me. My oncologist gave me some medication to try, but even that was not very effective.

Hair loss

Not only did I lose the hair on my head, but every other hair on my body too including eyebrows and eyelashes.

Tearing

• My eyes watered frequently, the left eye more than the right for some reason. Even now my left eye tears a bit for no good reason.

Altered taste

• Water is my preferred beverage, but even water tasted nasty. I tried several different brands of bottled water, tap water, and filtered water. None of it tasted good. I could tolerate one for a while, but after some time that one would become intolerable, and the hunt was on again to find something palatable.

Food

• Food had its own unique flavor, and usually not what it was supposed to taste like though.

Tachycardia

• Or a racing heartbeat

Lightheadedness

• I was so lightheaded that at one point I could not sit up in a chair without feeling like I was going to pass out. I grabbed a pillow and laid down on the floor. Once the feeling passed, I tried to sit up again only to feel extremely lightheaded again. Because of this, I had to have another echocardiogram and a stress test done. Nothing was wrong with my heart, and I was not dehydrated. The lightheadedness was just something I had to endure for a while.

Change in fingernails and toenails

• The nails on all my fingers and toes had what looked like two or three layers of extra nails growing on them. My nails returned to normal after a few months after I completed chemotherapy.

Neuropathy

• My fingers became very sore, and the tips became numb. My toes were just numb, not sore. This also resolved after chemotherapy ended.

Hot flashes

• Because the chemotherapy disrupted hormone production, I had severe hot flashes alternating with cold spells. No sooner did I put a beanie on my cold, bald head than I was ripping it off because of the intense heat from the hot flash, only to find the breeze on my head uncomfortably cold, so back on went the beanie. This cycle repeated multiple times a day.

The pain and numbness in my fingers became intense. For this reason, I decided not to take my final chemo treatment. I didn’t want the numbness to persist to the point that I could not return to my nursing job once I recovered from cancer. (Read: The Day I Met Cancer in the Mirror)

The next stop on my cancer journey

One month after my last chemotherapy dose I went into surgery. I had several decisions to make before the day of surgery.

These decisions included:

• Was I going to have a single or double mastectomy?

• Would I have artificial breast implants inserted at the time of the double mastectomy?

• Did I want to use my own tissue for reconstruction?

I, with the advice of my surgeon, decided to have a double mastectomy, but I chose not to have any reconstruction done at all. Even though I did not have cancer in the left breast, I decided to have the left breast removed also. My surgeon told me that the kind of cancer I had, lobular carcinoma, often goes to the other breast. For this reason, I chose to have a double mastectomy. It was bad enough going through cancer once, no way did I want to go through it again. If that meant taking the breast that didn’t even have cancer in it, then so be it.

I chose not to have any reconstruction done for a few reasons:

• Firstly, I did not want any foreign material in my body. This was just my personal choice.

• Secondly, my cancer team told me that if cancer came back, it could be harder to detect because of the breast implants.

• Thirdly, I talked with two other nurses I worked with who each had breast cancer. One decided not to have reconstruction, and she gave me her reasons why she chose this option.

The other nurse decided to have reconstruction but said that if she had to do it again, she would not have had the reconstruction done in the first place. She stated that since there was very little tissue covering the implants, they would become cold and uncomfortable at night if the blankets shifted off her chest. She had other reasons as well, but that one stuck with me.

• Fourthly, I watched a YouTube video of a brave woman who showed what her chest looked like after a double mastectomy without reconstruction. I was comfortable with what I was going to look like after surgery by making this choice.

So, the next stop on my cancer journey was a double mastectomy without reconstruction.

I went home the same day of the surgery with two Jackson-Pratt drains in my chest and a binder around my chest to put pressure on the tissue and help prevent swelling and fluid collection where the breasts were removed.

Ten days after surgery, the surgeon, and my husband, removed the drains from my chest. I was so ready to get them out because the skin started growing around where the drains were inserted into my chest, and it hurt any time the tubes moved.

I tied a shoestring between the two drainage collection bulbs and hung the shoestring around my neck like a necklace when I showered to keep the drains from pulling. When I dressed, I put the JP drains in the pockets of a shirt or jacket to prevent tugging.

But getting them out was the best solution of all to prevent them from pulling my skin.

My next cancer journey stop: radiation treatments.

Three weeks after surgery I met with my radiation oncologist. She explained what the radiation would do, how often I would receive treatments, and what side effects to watch for.

Four weeks after surgery I started radiation treatments Monday through Friday for six weeks straight. The doctor had told me that radiation slows down the healing process and because my incisions had not completely healed yet, the incision on my right chest might begin to separate a bit, but it would heal completely after the radiation treatments were completed.

Before starting treatments, the radiation techs positioned me very precisely on the radiation table and put very small tattoos on my chest to mark where the radiation beams would focus.

First, I laid down on a special pillow with my arms above my head. They then vacuumed all the air out of the pillow and the position of my body left an indentation on the pillow.

Next, they pointed the radiation beams at my chest from several different angles and put a small tattoo on my chest with each change of the beam to make sure the beam would be lined up exactly the same with every radiation treatment.

Each day when I went in for treatment, they put the pillow on the radiation table, and I laid down on it in the same position as when it originally formed around me. This ensured that I was in the correct position each time and that the radiation beams hit me in the same place every time so as not to radiate unintended areas of my chest.

Burns

Like the radiation oncologist told me, the incision began to open a bit. Also, the radiation burned my skin. As a result, I had open burned areas on my chest.

The left side of my chest did not have cancer, so the radiation techs directed the radiation to just the right side of my chest and underarm. As a result, the incision on the left side of my chest healed fine, even during radiation treatments.

Thankfully, I did not feel the burns because my chest was still numb from surgery. The radiation oncologist stopped the treatments for a few days to let the burns heal a bit, then resumed them. I had to treat the burns twice a day with a special solution and cream for several weeks to get them to heal. Once the burns healed, the only scar was from the mastectomy incision.

So that is the end of my cancer journey, right?

Not hardly.

After I completed all the treatments, I went to frequent follow-up appointments with both the medical and radiation oncologists. I had to have a PET scan repeated a few more times to make sure no new areas of cancer showed up anywhere.

I had lab work drawn before seeing the medical oncologist each time. And I started taking a medication to interfere with estrogen production which is what fed my cancer, to begin with.

A suspicious area showed up in my sternum near where the original cancer was during one of the PET scans.

Here we go again with a CT scan and then an MRI.

Still not completely able to diagnose the lesion, I had to have a bone biopsy taken from my sternum. The results came back as cartilage inside the bone which is abnormal.

Because of this new finding, I went to see an orthopedic oncologist. Thankfully, she looked at the MRI I had before I started treatments and compared it to the most recent MRI. The lesion was not new. The defect was something I most likely was born with.

Whew! What an emotional rollercoaster that was.

Issues I encountered while on my cancer journey

My oncologist did not want me to work during my cancer treatments since I work in a hospital. He was concerned I might pick up an infection that would be difficult to treat because the chemotherapy suppresses the immune system.

So, I was off work for nearly a year.

I was so weak from all the cancer treatments and I had lymphedema in my right arm and chest since the surgery, I went to physical therapy to:

• One, regain strength and mobility, and

• Two, get treatment to move the excess fluid (lymphedema) in my right arm and chest back into circulation.

The surgeon removed twelve lymph nodes from under my right arm.  Blood vessels move blood, oxygen, and nutrients throughout the body, but lymph vessels pick up debris and excess fluids and dump them into the circulation where they are eventually eliminated from the body. Because of the interruption of the lymph system, I had excess fluid that wasn’t being picked up.

Another stop on my cancer journey

I went through several months of physical therapy where the therapist did a special form of massage that moved the excess lymph fluid to other lymph nodes that were not impaired. I also had to wear a compression sleeve on my right arm continually, except while I was sleeping or showering, to help prevent excess fluid buildup. Eventually the swelling resolved, and I didn’t have to wear the sleeve anymore.

I will always have to wear a compression sleeve if I fly or go to higher elevations, like up into the mountains.

Per my oncologist, I could no longer do bedside nursing care when I returned to work. I am not allowed to do any heavy lifting, pushing, pulling, or tugging because of the effects of radiation on my chest. All the activities a nurse does every day on the job.

My oncologist stated that the stress of exertion on my chest could cause the bones to erode. That is why he didn’t want me to do bedside nursing anymore.

The follow-up appointments with the oncologists continued but became less frequent as time went on. At one of my appointments with the medical oncologist, I told him I was having pain along the upper, right side of my sternum. Not where the bone defect is, but where the ribs connect to the chest bone. He thought it was probably arthritis, but just to be sure, he had me go for a chest MRI.

Another bump in the road on my cancer journey

Here we go again. The MRI didn’t show anything of concern in the area where the pain was in my chest, but something on my spine looked suspicious, so I had yet another MRI to look at the bones in my back this time.

The radiologist diagnosed the lesion as small hemangiomas, so I had to go to see a neurosurgeon. Even though I had hemangiomas in a few vertebrae, he said that they were quite small and the likelihood of them ever causing a problem was minimal, so I did not need surgery. Yahoo!

It has been nearly seven years since I started my cancer journey. My radiation oncologist released me from her care last year. I still see the medical oncologist, I still take the estrogen blockers, and I’m still working to get excess weight off.

A cancer journey is filled with many emotions.

The emotions experienced during a cancer journey can be any emotion at all.

I felt many of the common emotions one might expect when diagnosed with cancer. I felt anxious, distressed, grief, nervous, and worried.

But, because of the confidence of my doctor that this cancer was curable, I too felt confident, courageous, hopeful, and optimistic.

But the strongest emotion I felt was relief.

My mother died from breast cancer. (Read: The Day Cancer Turned Pink). Her cancer journey was long and painful. When she died, I just felt that one day I too would have breast cancer.

I’m not a pessimistic person, but I just had a strong feeling that I would one day have breast cancer. When I was diagnosed with breast cancer, I felt relief because now I could start getting treatments and not worry when the day would come. I could finally defeat the demon that had plagued me for so many years.

My cancer journey has caused me to make some lifestyle changes. For instance, when I buy blouses, I must be careful not to get any that are low cut so as not to expose my chest. My physical activities must exclude putting stress on my chest to protect the bones. I need to be careful if I take any supplements to not take anything that can mimic estrogen so it won’t feed any cancer cells that may still be in my body.

So, what does a cancer journey look like?

For my husband, it was like pausing at a rest stop on the way to the rest of his life.

For me, my cancer journey has become a way of life.

Even though I don’t have cancer, cancer still has me. My cancer journey will be a lifelong trek.

Because of the radiation treatments to my chest, I have the possibility of developing another kind of cancer called sarcoma. My radiation oncologist cautioned me that if I ever feel any kind of abnormal lump in my chest, to let my medical oncologist know right away.

The uphill climb of my cancer journey is behind me, and hopefully, it will remain that way. I will forever be on this cancer journey, but for now, at least, it’s more like a slow train ride instead of the wild rollercoaster ride it was a few years ago.

Wishing you all the best,

Kelly

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Yes, I am a nurse. No, I am not your nurse. The medical topics discussed in this, or any article on this site, are intended to be issues for you to discuss with your medical team if you feel they apply to you. None of the information you are about to read in this article is treatment advice for you from me. I do not have that authority.