Diary of a bilateral mastectomy
Hello, this diary could be called many things, as I started with a lumpectomy, and two years later had a bilateral mastectomy....I hope by sharing all the things I learned along the way, it will help another who may be embarking on a similar journey.....
January 2005 - I found a lump in my left breast. I was about to turn 44. I went for a mammogram, but the mammogram showed nothing. Finally, an ultrasound-guided core biopsy revealed Stage 1 cancer, less than 1 cm large, IDC. Every breath I took from that point was colored with the reality that I had cancer. That I could die. That I may not see my children get married...or would leave my soul mate too soon.
February/March, 2005 - I have a computer and decide to research this disease. Learn what it's all about. Educate myself, so I can make the best decisions possible, on this new journey I'm on.
March 31, 2005 - I found out that allopathic (mainstream) medicine can only legally treat me three ways....with surgery, chemo/adjuvant therapy and radiation. That's it. And it's been this way for decades. So my choices boil down to 1) do nothing, 2) have a lumpectomy with radiation, 3) Have a lumpectomy - but no radiation - where they would take out larger margins of tissue from around the lump, and these margins would have to be clear. My surgeon said the stats are pretty equal between options 2 & 3.
I decided to go for option number 3. Deep in my heart, I was afraid to use radiation therapy right away....because if - god forbid - the cancer ever came back, I wouldn't be able to radiate the same area twice. So Dr. L removed the lump and an additional +1 cm margins that tested ‘clear' of cancer.
NOTE: looking back, I wish I wish I wish I'd asked or paid for an MRI to ensure this lump was the only cancer in my breast, due to the inability of the mammogram to detect anything.
May 2005 - The area where the lump was removed is full of fluid and I can actually hear it swishing around when my breast moves. Although it's getting more painful, I believe this is part of the healing process. Then I suddenly get very sick and come down with pneumonia. I'm given very strong antibiotics, and suddenly my breast doesn't have fluid swishing around anymore. It seems I was developing quite the infection, and getting pneumonia and taking the medication brought everything under control. Talk about healing the hard way, and learning that no matter how much I filled my head with research, I still had to - now more than ever - be in tune with my body. Another lesson in facing the truth of this new reality.
Over the next year, I have an appointment with my surgeon every three months for a checkup. I feel the pinch of this disease on my peace of mind. Will I ever feel normal again? What is normal? I don't think I know any more.
May 2006 - I feel something is wrong along the lumpectomy incision - it's like one area of the scar is growing. Dr. L agrees to remove that area of the scar and have it analyzed. It turns out to be cancer, but it's microscopic (so small they didn't bother measuring it) and margins are clear, so we decide to leave things as they are. I'm starting to see that I am in tune with my body, more than ever, and begin to trust this feeling.
August 2007 - I found another lump in the same breast - different quadrant. This lump is closer to my arm pit, as opposed to the first lump which was closer to my breast bone. Once again, the mammogram showed nothing. I had to guide the nurse to the lump, and she taped a little steel marble to my breast right above the lump. No dice. I realize now mammograms are worthless to me. So off for another ultrasound, and there it is. Another core biopsy is scheduled. More hurry up and wait.
It was cancer.
September/October 2007 - Did more research. I must have clocked hundreds of hours sitting at my computer, reading, digging deeper and reading some more.
October 1 - 31, 2007 - After bone scan, liver ultrasound, MRI, CT Scan of the liver/abdomen, blood tests, the MRI showed the known tumor, plus other areas of concern in the left breast, and a suspicious 1 cm mass in the right breast. I had three choices 1) do nothing, 2) remove the left breast and lymph nodes, 3) remove both breasts.
I opted for the third choice. I can't say how hard this decision was to make. I only know I had to go deep into my heart for many conversations with myself. I loved my breasts. I was surprised to find out how much I loved them.
I also embraced a more natural way of living, with as few toxins in my life as possible. I had meditated for 25 years, introspected, and years ago had switched to an organic lifestyle, and lived as drug free as possible (I didn't even take tylenol for a headache). I was so scared of making the wrong decision, of having huge regrets down the road. Even though I wasn't aware of it consciously at that point, there was a part of me that was even more scared of living than of dying. Living meant I needed to face down the fears, and learn how to dream and hope again - with no guarantees. None. Not even the false ones I had before I ever had cancer.
And although I hate admitting it out loud, I had these daydreams of what my death bed scene would be like....with my loved ones and family around me....how one by one I would give wise and sage advice to my children on life, the universe and everything, that would miraculously change their lives for the better. How I would be strong for my husband, for everyone. Dying would be easier (in my head). But don't believe everything you think!
I came to understand that cancer was a crap shoot. A treatment that worked for one person might not work for another, and although dying was a possibility, so was living. That's when I knew I really wanted to Live and Fight this thing. And those daydreams of dying just died.
And I decided to have a bilateral mastectomy. To lose my breasts, but to also lose as much future worry as I possibly could.
My surgery was scheduled for November 1.
October 31, 2007 - went for sentinel node mapping - they had me rub Emla cream onto injection sites 2 hours prior to the procedure. There was no pain at all when they injected the radioactive tracer into each breast. They took films that showed the path the tracer followed from the breast into the lymph glands, and that helped them decide where my sentinel nodes were located, which they marked with a marker on my skin, to guide the surgeon during the operation.
November 1, 2007 - the bilateral mastectomy is performed during a four hour operation. First they removed the right breast (no known cancer, only suspicious 1cm mass shown on MRI), tested two lymph nodes in the breast and 2 SLN's - all were clear, no further nodes were removed. They closed the right side completely before starting work on the left side. After removing the left breast, the SNLB indicated there was cancer in the sentinel lymph nodes so the auxiliary dissection (removing additional lymph nodes for testing) was also performed.
My surgeon also removed excess skin from under each arm so I wouldn't end up with 'flaps' of skin there. I had two drains inserted where my left breast had been, and one drain where my right breast had been.
Eight hours after surgery, my right hand/arm began to swell up (very painful). The nurse milked the drainage tube until this huge clot suddenly appeared. Because it was too large to fit into the drainage bulb, she had to disconnect the tube from the bulb and milk the clot onto the bathroom floor. Next thing I know I'm getting an 'anti-clotting' shot.
NOTE: regarding immediate reconstruction - my surgeon doesn't recommend this due to possible complications with healing and adjuvant therapies. I agree with him, so reconstruction isn't even in my vocabulary at this point. I have come to realize that I am in the minority here, as many have reconstruction directly after having mastectomy(s).
November 3, 2007 - sent home from hospital with 18 Percocet and a prescription for Tylenol 3. The Dr. also removed all my dressings, so I went home 'au natural' (staples, stitches and glue on the incisions). I wasn't supposed to raise my arms above shoulder level, and needed to watch the fluid levels in my drains....the levels would stay high if I was doing too much.
I had a form from the hospital that I had to record the time I was emptying the drains, the amount that was emptied and the color of the fluid. Once I reached a point where all drains were draining less than 25 ml each (just under one ounce) of clear fluid, for three days in a row, then I could have the drains out.
Once I was home, I wore the pyjamas I bought that have front pockets at my waist, and let the drains sit in the pockets. When I finally went out of the house, I safety pinned the drains to the inside of a long sweater. (But since that time I've learned about the marsupial pouch, which is made to hold drains. The link is http://www.turnerhealth.com/)
I was able to shower after 24 hours, and ended up safety pinning my drains to a ribbon I hung over the shower head. It freed my hands so I could wash myself.
I slept whenever I was tired and found that having extra soft pillows strategically placed around me, really helped with my comfort, as I was spending a lot of time resting in bed.
November 4, 2007 - After taking 15 of the 18 Percocet, I decided to stop taking them altogether. I needed to feel the pain, to know if I was overdoing it or not. If I stayed on the Percocet, I'd never know, because they worked so well.
November 9, 2007 - the staples (76 of them) are removed. I was so afraid this would hurt, that I took 2 of my remaining 3 Percocet to get me through. Afterwards, nurse placed steri-strips vertically, all along the incisions. I was to keep on showering as usual, and not worry about them. The nurse said they'd start falling off after 7 days or so, and said I could take them all off at that point. She also gave me 'glue' remover (similar looking to alcohol pads individually wrapped), and these really helped to take off the bits of adhesive that were left on my skin from the steri strips. I saved all the staples in a pill bottle. I'm not sure why. I just did.
November 14, 2007 - finally, all three drain levels register under 25 ml per day, and the fluid is clear. I go to the hospital and the nurse removes the drains....OUCH!! The first drain on the right side came out without any pain, but the two drains on the left hurt a lot...almost like a burning sensation that lasted several minutes. I envisioned the drain to be a simple tube, not this thick long inch wide thing with perforations. Anyway, I took photos of the drains, but didn't keep them. I'm glad I took my last Percocet for this, but wished I'd only taken one for the staples so I would have two for the drains. Hindsight, yada yada.
So now, two weeks after the operation, I slowly start to use my arms a little more each day, understanding that my body will be developing new pathways for the lymph to flow. So I go for the stretch when I reach up to wash my hair, rather than hunching over like I was doing. I stand with my back against the wall making angel wings with my arms, like I did as a kid out in the snow.
November 16, 2007 - First appt. with surgeon since operation. He told me the auxiliary dissection on the left side showed that in level 1, 4 of 16 nodes tested positive (for cancer), and in levels 2 and 3, 2 of 6 nodes tested positive. The cancer removed was 4 cm, with clear margins, ER+PR+ HER2- On the right side, the suspicious 1 cm mass was pre-cancerous papilloma. It felt so good to realize my decision to have them both removed was the right one for me. So, the string of my diagnosis: IDC, 4cm, Stage IIIa, Grade 1, 6/22, ER+/PR+, HER2- suddenly made sense.
Dr. L said the treatment plan would start with chemo, followed by radiation to the left side. I would be under the care of an onc for this treatment, as he is a surgeon and doesn't administer adjuvant therapies.
Dr. L also said the first six weeks after the operation are the most important time to do exercises for the upper body and arms. Basically he said I needed to wait three weeks for the incision to heal on the outside - but because I was still healing on the inside, I needed to let pain be my guide. He booked me into a physiotherapy session for the coming week.
November 22, 2007 - It's three weeks since my operation, and I went to my first physiotherapy session that is sponsored by the hospital. I learned a bunch of good exercises, and how to massage the scar tissue. I found out this was important so the scar doesn't adhere to the muscle and tissue underneath, as this becomes quite painful when the healing is finished and would really limit my range of motion.
December 1, 2007 - I've been faithfully doing the exercises I learned in physiotherapy....ouch, ouch, ouch. They hurt so much at first, and then the pain slowly goes away, but never completely away. I'm also massaging the scar tissue but have no sensation along the scar at all.
Note: Looking back, I realize how important these exercises and massage were prior to radiation therapy. During radiation, muscles and tissue are being ‘cooked' so do your utmost to attain the maximum range of motion possible before therapy starts.
December 19, 2007 - met with my new oncologist to discuss next steps .... even though I'd had cancer previously, I never had chemo or radiation, so both these options were still open to me. Again remember that you can't radiate the same area twice, and once your body has been poisoned by whatever chemo cocktail you are given, those particular drugs may not have any effectiveness the second time around because your body has developed an immunity.
So, my onc recommended 6 rounds of FEC (via IV) with one of the taxanes, followed by radiation therapy.
I had written down a ton of questions for my onc for this appointment and printed up lots of my research.
So when my onc said I would be getting one of the taxanes, alarm bells started ringing in my head. I knew I had just read studies claiming the taxanes were not effective for women with ER+ cancer. After discussing this with my onc, she said she was aware of the research and was comfortable removing the taxane from my chemo cocktail.
I walked out of there slightly dazed, realizing if I hadn't done my research, I'd be taking the taxane - the most poisonous form of chemo that has the most potentially devastating side effects. This particular chemo has permanently impaired the quality of life of many people....neuropathy - where you can't feel the nerves in your hands and feet....and something to do with the eyes, and many more I can't remember right now. And I realized that unless other women knew about this research, they would be trusting their doctor to make decisions that could alter their lives. At that moment, I realized I would never take the doctor's word for anything, never let them made any decision for me. I would substantiate their recommendations with research, and would challenge things I didn't understand, or felt wouldn't be good for me.
March 2008 - First dose of chemo.....I felt a type of sickness I've never felt before....but my body was dealing with it.
Then, weeks later when I received my second dose, I was so ill. I ended up sitting in a recliner for almost 100 hours straight....constantly sipping Aloe Vera Juice mixed with water because the chemo cocktail of drugs was burning me from the inside out. I drank a lot of water, trying to flush these toxins, but I ended up having to pee in the shower, with water washing against my skin, because the toxins I was flushing out were burning my private parts.
I didn't vomit, but I could Feel that part of my brain the anti-nausea drug was turning off, that wanted me to vomit out this poison just for survival's sake. The headache was intense.
I can't explain how it felt to be poisoned....to know parts of my body were dying because of the poison, and the only hope I had of the chemo working, was if the cancer was contained in the parts that were being killed off by the chemo. This drug was barbaric...there was nothing subtle about it.
That left me with a decision. Do I finish my chemo doses?? If the third dose was as progressively bad as the second one, how would I possibly get through six of them?
I knew I was getting WAY TOO MUCH of the drugs. Although I am overweight, I have a high sensitivity to drugs. So, the amount of chemo I was prescribed was according to my body mass index....not taking into account my sensitivity to drugs. And yet a friend of mine who is six inches shorter and is half my weight - needs three or four times the amount of Tylenol than I would ever use to deal with pain.
Maybe this is the reason why cancer is such a crap shoot. Rather than really focus on the research that uses DNA and genome testing to determine how medication affects EACH individual, and prescribe doses accordingly, they go by the most stupid measurement there is...your weight. If my friend needed chemo, they'd prescribe according to her weight....and the fact that she is resistant to meds, and needs higher than average doses to benefit by them, would be ignored.
Well, I ended up stopping my chemo at that point. Although the onc agreed that the dosage side effects were very extreme and agreed to lower the dose, I felt I'd had all six doses split into two sessions. I was done.
At that point that I decided where I drew the line, between taking cancer medication versus endangering what I considered to be my very reasonable expectation for quality of life when this was all over.
June, 2008 - Several weeks after finishing chemo, I started seven weeks of radiation therapy. Now, they didn't just radiate the area...they bumped it up a notch by placing a 'bolis' over the area to be radiated. The bolis is a large square layer (10" x 10" ish) that is gel like, and it mimics a heavy layer of skin and tissue. So, when they put it on you during treatment, it 'fools' the machine into delivering a much stronger dose to the surface of my skin under the bolis.
Over the weeks, radiation tired me. Again, I did research on how to get through it as best as possible....and took turmeric pills (curcumin) throughout, and used lots of the water based cream they gave me.
My skin didn't break down and blister until after treatment finished, which was a blessing. What is important to know is that the full effectiveness of the radiation doesn't peak until week ten, three weeks after you've stopped treatments - it's a cumulative effect. So, when blisters started to form in week 8, and then more blisters developed under those blisters in week nine, it took another 3 - 4 weeks to heal. Life was very challenging, as the fatigue, discomfort and pain were sometimes overwhelming.
Once the blistering healed, I started to gently massage both the left and right sides with certified organic oils on a regular basis. The first 10 minutes of the massage (on the left side only) were painful, because this is the area that was radiated...the muscles are hard, and feel like cardboard, and the massage is very painful until blood starts flowing in the area. Today, I have full range of motion on both sides because of the work I did Before radiation, but no matter how long I massage, the muscles always feel like cardboard again the next day.
2009 - Now my onc wanted to start me on Tamoxifen. By now, I had researched Tamoxifen, and understood that it worked by ‘interfering' with the estrogen/cancer relationship - and decided this treatment wasn't worth the known possible side effects. I asked my onc if we could go a different route.....to completely suppress the estrogen production in my ovaries with zoladex shots. She agreed this was a good alternative to Tamoxifen, and so I started receiving monthly zoladex shots, which put me immediately into menopause. I was 49 and it was just around the corner anyway, and I felt more comfortable with this approach. My onc asked if I would take an aromatase inhibitor (AI) along with zoladex shots. I agreed.
The following five months were interesting....no gentle intro to menopause....but instantly experiencing hot flashes, sweats, mood swings and all the rest. I remember shopping for groceries and almost climbing into one of the big freezers during a hot flash....!
But after taking the AI for six weeks, I started feeling arthritis in Every Joint in my body. Fingers, wrists, elbows, shoulders, hips, knees etc. It hurt to move.
That's when I stopped taking the AI. It wasn't giving me enough benefit for the side effects I was experiencing.
So, rather than continue taking zoladex shots indefinitely, I met with a doctor to discuss having my ovaries removed...an oophorectomy. I understand this isn't done ‘just because' and that there had to be a damn good reason for her to go in and take them out. I liked her attitude.
So, we've agreed to keep me on zoladex shots until the surgery, which would take place in mid July 2009.
February 14, 2010 - While massaging my scars I found another lump. It's on the left side, where there was cancer, where there was radiation, and this lump is resting underneath the scar, directly below my armpit.
The world stops spinning on its axis for a few moments as I feel a hundred screams echoing inside me.
My mind goes back to the conversation I had with my radiologist, asking what would happen if cancer came back to the area they radiated. She told me that - if it does - the mortality rate is 95%. So now, I'm thinking, ok, there's a 95% chance I'm going to die. I was sure it was cancer. I had been right three times in the past. I just KNEW.
Now I started to make my will in earnest. No more daydreams of dying gracefully, surrounded by my family.....in my mind and heart, I started dealing with it as a reality.
I even informed my boss that I was most likely going to die from this, but would make sure I trained my replacement well.
Can you believe that?? I guess that spells out my state of mind more clearly than anything.
This was the darkest hour for me. And it went on and on and on. Every thought in my head was in relation to ‘I'm dying'. Everything I looked at was colored with ‘I'm dying'. My every breathe stunk with the belief that I was dying.
But I had to go through the motions of living.
February 17, 2010 - Today, I was given four ultrasounds....upper abdominal / pelvic / inside my pelvis (where they put the probe up inside of you) / and under my arm. I was on the table for just under two hours. Now, I have to hurry up and wait for the results.
February 24, 2010 - Time for the results. My onc indicated ultrasound identified the lump under my arm to be 1.8 cm in size. The scans also showed concerns with my kidney and the blood work indicated there could be problems with the bones. She wants me to have a CT scan right away.
The plan is to make an appointment with my surgeon, discuss the results of the CT scan, and potentially schedule a date to operate.
March 8, 2010 - Today I saw my counselor. I've been seeing her intermittently since my first diagnosis in 2005. She is the one person I can talk to, face to face, about dying. About everything....and not feel I have to be strong for her. She is strong for me. She listens so well, she hears what I'm not saying.
March 12, 2010 - Met with my surgeon Dr L. He didn't have the CT scan results, but indicated he would be able to remove the lump with freezing only (no local anesthetic) and then would send it for biopsy.
March 19, 2010 - Met with my onc to go over the CT results.....this is what I found out.
- if the lump under my arm is cancer, it is a 'local' recurrence.
- some people have many local recurrences, and this is not considered as metastatic cancer (cancer that has spread to the organs or bones or brain, etc.)
- if the biopsy shows cancer, it means the cancer is 'resistant' to chemo and radiation therapy
- all 'resistant' cancer will eventually spread to other parts of the body
- but they have no idea 'when' it will do so
- the 95% mortality rate is correct, but that data is specifically related to 'resistant' cancer that has metastasized.
- the CT scan of my organs and bones was clear clear clear!!
So I'm sitting there, feeling like a fool - but a happy fool, because now it's dawning on me....umh, exactly How was I going to die from this lump under my arm? How would that scenario actually unfold??
I was trying so hard to deal with the fact that I'm dying that my brain just shut down to all common sense. Hindsight again, yada yada....
April 5, 2010 - The lump was removed, and it was biopsied immediately.
It wasn't cancer!
It was simply a bunch of nerves that were starting to regenerate....which is a Healthy thing.
I sat in my car and sobbed out all the heartache of the past weeks....my relief, my joy. My sadness for being in this position to begin with.
At that point I decided that although cancer may not be finished with me, I'm finished with it.
I don't want it to rob me of the time I do have left, however long I am blessed with. That in a life, whether there is cancer or not, you need to be aware that every single moment matters. That to live in the past or the future robs me of ‘NOW' which is the only reality there is.
May 10, 2010 - I went to see my surgeon, as there is still a bit of a lump there, and there seems to be another one right next to it now. This time, I wasn't going to jump to conclusions. I was willing to hurry up and wait for more results.
As Dr. L examined me, he said "let's just take a closer look at this" as he wheeled over a portable ultrasound machine!! So there we were, going over every single area along the scar line, with him explaining what he was seeing, and showing me how the lumps were simply nerves regenerating. He knew this because of the way the lumps reacted to the pressure of his fingers, explaining that a tumor would maintain its shape and no matter what pressure was put on it, whereas the lumps of nerves could be seen to actually compress when he pressed with his fingers. This ultrasound machine was gifted to his office by a patient who found the stress of 'hurry up and wait' to be too much. If I could, I would give her the biggest hug, because to have answers Right Now - without the waiting ritual - was such a gift.
2012 - This November it will be 5 years since my bilateral mastectomy. What a journey this has been. I started it kicking and screaming....hit some highs, but many more lows - and today, after lots of practice over the years, there is more balance, self respect, and emotional intelligence than before cancer.
I realize my journey is different that many of yours will be, and that the decisions you make will be based on where you draw the line in the sand, and what your instincts tell you is right for you. Know that your instincts are worthy of a voice in this process and please respect that voice before you let anything from the outside override it....
For me, my quality of life along this journey meant a lot. I had to decide what treatments to embrace, and why. I decided that if any adjuvant therapy didn't give me at least a 5% better chance at survival, then I would not take it, especially if it had a greater than 5% chance of causing serious side effects that would affect my quality of life.
Also, for all stats I read about, or was quoted by my oncologist or surgeon, I made sure I understood how these stats were achieved.....were they XX out of 100 (absolute), or were they relative, i.e. when two people out of ten benefited, then it is 20% successful (2 represents 20% of 10). Make sure you clarify what type of percentages you are being given in any information and literature that comes your way.
Today, I have conquered hills of fear, but I still have mountains to climb. I am changed completely by cancer. And am coming to realize how blessed I am for some of these changes - although I still mourn for the loss of my breasts.
This journey is my life - and my life has been colored by cancer.
I have become lost along the way many times, and found myself many times. I have become a better person in many ways, but have also lost some of the inner peace that was the cornerstone of my life.
My faith has been challenged, and then renewed. I learned by experience that the only lasting truth about me lives in my heart. It's not this body, or these thoughts and emotions that are as plentiful as sand on the beach. And I believe I am beginning to learn how to be truly surrendered to God's plan for me.
I will continue to swim deep, where the waters are calm, with joy, and gratitude for yet another day. This is the gift of cancer....this awareness of the moments that make up a life.
I have taken great comfort in the information shared at this site - and feel there is a place I can go where understanding is the common thread between us all.
I can't thank you enough for 'being there'. No matter what time of day or night, I have always been able to come here, and feel the comfort and understanding so generously shared by all.
From my heart to yours, thank you.