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.
Sigh.
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.
Period.
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.
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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.
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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.
Twinkly
Comments
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Twinky - Thanks for sharing. I have a bilateral scheduled for 11/28.
Ordinarily Im REALLY logical and practical but this upcoming surgery isnt setting well yet.
All the pics of women post operation look like really pretty men. GREAT
Plus most of the reconstructs dont look so swift either. As I said I know thats not the most important thing but for some reason Im having trouble getting past it.
Hugs from Va
Kim
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Hi Kim,
Sometimes it's easier to focus on the small things, because the big things are just too big. Yet, in the world of bc, even the 'small' things are big things, aren't they?
I pray your operation goes well...
Swim deep, where the waters are calm...
Hugs back atcha from Alberta, Canada
Twinkly
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I'm with you , Kim. Yesterday I had my surgical post op following quadrantectomy and sentinel node biopsy (surgery was 11/8). I had already seen the oncologist and radiation oncologist the day before, everything set for radiation, and gee, wasn't this easy. My cancer was caught early, very small tumor, stage 0. But then there was that little spot that showed up on the MRI in the other breast but everyone was so sure that was benign. Then WHAM! The surgeon had the path results and informed me I now need a bilateral mastectomy. I was so calm through this whole ordeal but now I am scared to death! All the pictures are so ugly but cancer is uglier and I want to live. So do I go ahead with the mastectomy or get another opinion????
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Sandy, you should always get at least one more opinion. You might receive a differing opinion, or possibly confirmation of the first opinion. If you can have skin-sparing mastectomies with immediate reconstruction, you will obtain the best possible cosmetic result.
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Sandy,
Im so sorry to hear things have taken such a turn for the worst.
I always believe in a second opinion and so far have never regretted getting one.
You cant see me but Im holding out my hand, we can get thru this together.
Hugs in Va
Kim
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Thank you all for sharing your experiences. I am going for my bilateral on Tuesday as well as a biopsy of the sentinal lymph node. I had .4 cm invasive cancer that was removed in the original surgical biopsy with LCIS involved. Reading everyone's comments has really helped me in this past month to make decisions. I'm more worried about what they will find with the lymph nodes than losing my breasts.0 -
Twinkly, Thank you SO much for sharing. I am scheduled for a bilateral masectomy and sentinel node biopsy in December, and I really don't know what to expect. How long will I be in the hospital? (my surgery is VERY near Christmas which makes me quite sad since I am a Christmas freak! I told my husband that he and my boys will be responsible this year for preparing Christmas Eve dinner which is no small feat for them, believe me! Anyway, it is so great that women like you are willing to share your experience with those of us who are facing the same thing. I am very thankful for your willingness to do this! Thank you SO much for your story.
Anne0 -
Lewisfamily-
I want you to know that although people react differently to surg...my surg was not as bad as I thought. I am one month out from a bilat mast. I couldnt get recon b/c of blood loss and vitals (which I believe) helped in my FAST recovery. Im getting recon Dec.10th
I stayed in the hospital for only 2 days...couldnt wait to get home:<}.
The only issue I had, was the morphine made me really sick. If you think you cant handle the morphine...I would ask for something else:<} Also I reacted to the anti nausia meds....My last nurse said that happens to some people. She added water to it and I stopped throwing up right away:<}.
One more thing....I got to take out my drains before I went home. Ask your surg to put in the new ones....not the flat old ones. When they take them out....ask for some anti anxiaty drugs and pain killers (cant spell today).
ohhhh also I got a skin sparing surg and ASK for your ps to sew you up:<} My ps felt really bad that she couldnt do recon, that she stayed and sewed me up really pretty. Most surg just stapple you shut.
I hope I helped.....you will do GREAT!!!!! I was home and feeling GREAT with in 4 days.....
Jodi
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Im having my bilateral mastectomy 11/28 and the plan is to send me home the same day. Im not sure how I feel about that but thats the plan. Ive have surgical drains before and taking them out was no big deal to me.
Also my surgeon uses GLUE. Not staples or stitches.
Kim
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Kim
That is GREAT!!!!! Glue? I only had stitches in the corner of both scars....maybe I was held together by glue too:<}. I wish my drains went as well as yours. That was the WORST pain I hope I EVER feel again in my life. I am glad that g-d gave me the abilitly to forget:<}.....
Good luck with everything ALL will be FINE!!!!
J
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Hi Kim,
Going home the same day would have caused me anxiety....how would they know if the pain is being managed properly?? Also, many 'things' can happen in the first 24 hours after surgery that can have a big impact on healing. For instance, about 8 hours after surgery, my right hand/arm began to swell up (very painful). Thankfully, the nurse had experience with this and milked the drainage tube until this huge clot suddenly appeared - it was too large to fit into the drainage bulb - so she had to disconnect the tube from the bulb and milk the clot onto the bathroom floor. Of course, next thing I know I'm getting an 'anti-clotting' shot. By the next day, the swelling had gone away.
If you're not comfortable going home the same day, I hope that you are able to stay longer, if you want to.
FYI, sometimes, glue isn't the best option, especially if a patient is even slightly overweight, as there can be extra pressure pulling the incision downwards - and I understand that is why my surgeon opts to use staples.
Before my bilateral mastectomy, I had a lumpectomy (in 2005). My surgeon used staples at that time, and after two years, the scar was almost invisible.
I hope all goes well for you Kimmie, and that you are able to take each step as slowly as you need to, in order to get through this challenging time.
Twinkly
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Hi Ladies --
Thanks to all of you who have posted. I went for my second opinion today and this surgeon, who I am told is one of the best in the world, told me I do have options. I could have another lumpectomy on both breasts with the hope of clean margins. He says it depends on the size of the cavity that was left inside my breast. But after reading your comments I am feeling stronger about getting through the mastectomy. I will meet with a plastic surgeon on Monday after Thanksgiving and will then make my final decision. I am hoping for skin-sparing mastectomy and immediate reconstruction. I wish you all a happy Thanksgiving, although I don't know how happy it will be for all of us so are so preoccupied with our breasts!
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Twinky -
I hope to stay at least overnight, if I dont Im getting a hotel for a night or two.
Your blood clot story is awful!! Im so sorry to hear you went thru that. And I am AT LEAST a little over weight so Im paying close attention to your advise about the glue and will talk to my surgeon. Thanks.
Sandy - Are you getting rads? I can not have immediate reconstruction because I need rads after surgery.
Hugs to all from Va
Kim
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Kimmie --
Surgeon told me no radiation but will have chemo after. I am meeting with my oncologist next Wednesday to get all my questions answered and make sure everyone is on the same page.
I am praying for all of you.
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Twinkly,
Thank you so much for sharing your story, In February 2006 had Mammo, came back that needed further review, 2nd Mammogram showed that I needed a Biopsy, this was done in March, 2006, April 2006, had lumpectomy path report said ADH and would go back in 6 months for another Mammogram. November 2006, Mammogram came back okay told to come back in 1 year.
November 2007, Had my yearly Mammogram, Biopsy next week, results read next day DCIS very large area. I spoke with the surgeon same week, going in for MRI first week of December and will be having a bilateral mastectomy done in Late January since I have a 50/50 of it showing up in the other side.
Thank you again for posting your Diary.
Tamara
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Hi Tamara,
I am so sorry your cancer returned, but I'm also very happy the mammo caught it, and you are now able to take action to get rid of it.
The diary is ongoing, and I'll keep it updated as I continue on my journey. One thing I've realized, is that although we are together on this journey, there are many different pathways we travel to get to our destination of being free of cancer (physically, emotionally, mentally and spiritually).
Because of this, I've learned so much from others experiences, and taken much strength from the kindness and support that is offered so unconditionally here.
I pray we reach the destination together.
Big hugs,
Twinkly
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dearest sandy,
i read kim's diary it was so helpful.regarding your question whether to do mastectomy?go for it!my husband once said....what kind of beauty would you get if you have both of your breast intact but your dead!it is better to remove the breast and live.live longer to see our loveones grow and enjoy each moments with them.let's fight and win!embayaras_rn@yahoo.com(elizabeth)
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Thanks Elizabeth. I know you are right. This just all came at me so quickly. I am glad I got the second opinion and, in fact, spoke to another surgeon yesterday (family friend) who reviewed my path and told me he agreed with the second opinion. But I am still leaning toward mastectomy with the hope that I will never have to worry about this again! Your husband is right!
The one thing I would recommend to everyone -- don't rush into a decision. Take the time to do some research, get a second opinion and talk to other patients. I was so shocked when I got the news but time and information has really helped me to mentally and emotionally prepare for what I am about to face.
God bless you!
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Twinkly - Just checking in.
My surgery is 3 days away. And YES Im still nervous!!!!!! Im hoping to fee better once its over.
Ill check on ya later
Hugs in Va
Kim
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Hi Kim,
Ok, deep breath.....and again.....
I've been so amazed at what we can get through, when we are SURE there is no way we can get through it (or so our 'brains' keep telling us)... but what happens is the human spirit is so HUGE, and it simply beats down those 'less than supportive' thoughts that plague us at 3 A.M. and we actually - somehow - get through some very very very intense emotional, physical and mental challenges. No matter who we are before cancer, once we've been diagnosed, and start the journey of working through the layers and layers and layers of fear, we have the opportunity to come out of the experience as much better people.
You are 1/4 of the way through your journey.....diagnosis is the first step, surgery is the second and adjuvant therapy is the third.
The fourth step is taking everything you've learned, and apply it to your life.
I can't believe how much I'm looking forward to a life without fear, or should I say....a life where I know how to face the fears and work through them. A life where I embrace every single day, humbled that I'm still here to laugh and cry and love. A life where I have my priorities straight.....to live from the inside - out, rather than from the outside - in.
Kim, we are all here holding you close....take heart my dear sister and know you are not alone - ever.
Twinkly
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Hi Kim --
I am praying for you. I hope this finds you home and comfortable post surgery. Just wanted you to know you have been in my thoughts.
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Thank you for this - it has helped me understand a lot of what I've been going through. I had my bilateral mastectomy on November 13th, 2007, and my next visit to cancer clinic is on December 10th, 2007. The emotional roller coaster is on - and the ride is making me sick.
Nadine.
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dear sandy,
i'm back checking emails again.did bilateral mastectomy and had bilateral tissue expander put in.It was not the best to feel.it was worst i think!it's probably better to opt for another reconstruction method.not with implant.this goes through stages and i have to be honest so no one goes next to me to feel bad.i don't have regrets with the double mastectomy.i'm at peace now.what's bad is the reconstruction.
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Mastectomy,
Sorry to hear you did not do well with the Tissue Expanders. I did fine with mine. The reason I chose to go with the Expanders is because I felt it was much safer than the Tram Flap and less scars on my body. I have heard of a lot of woman who go through the Tram Flaps and end up with complications. Hang in there it will get easier in time. If you have some pain pills you might want to use them.
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For all of you lovely ladies going through Mastectomies,
Good luck to you and I hope you have a great outcome. This decision was not an easy one for me to make but I chose the mastectomies because I really didn't want to have to deal with Cancer again. Not to say that I won't but I felt I had a great survival rate than if I had a lumpectomy. So many woman that I have spoken with that have had lumpectomies have had the cance return and then have to go through the mastectomy anyway.
When you think about it, what is a breast vs. life. It was never a question for me at all. My boyfriend was behind me, he said it is not your body but what is in your heart that I love so much and that will not change who you are.
I also am 43 so I did not have to want to deal with the long term SE from Radiation which goes along with a lumpectomy.
For all starting your journey, I wish you nothing but Best Wishes and will be praying for you all.
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Hello all --
Well, it's official. My surgery is scheduled for January 3 -- Happy New Year! I was hoping to get it done before Christmas -- kind of hard to be Merry with all this looming ahead of me. But that's o.k. I will survive! Next week is CT Scan, Bone Scan and MUGA test. Please pray that they are clear! Results of the tests will help determine my chemo regimen.
I have a dumb question for those of you who have had bilateral mastectomy with expanders. When you woke up from surgery were you perfectly flat or did you have some breast mound from expanders? How long before you had some shape? I am trying to determine if I will need to wear some kind of mastectomy bra with breast forms when I go back to work or if I can just fake it by wearing outfits with layers or jackets until I grow my new ones.
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My expanders had 200cc in them from surgery, so I woke up with--for me--decent size boobs. And my PS supplied a special compression-type bra that I wore. By the time I went back to work (six weeks post) I was wearing a zip-front jog bra, or a good wireless support bra.
Anne
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Twinkly and all--Thank you for this posting! I just received my path results from my third attempt at breast conservation, and they show DCIS throughout my breast. I'm opting for the bilateral because the second breast has a suspicious, "probably benigh" area, and "probably" just doesn't sound good enough to me anymore! My surgery is scheduled for Dec. 18th.
I think I'm going to use the time after the surgery to recover, lose weight and then reward myself with reconstruction after the oncologist says I'm clear of this disease!
All the best to everyone! Hope your surgeries and recoveries go well! Keep in touch!
Cat
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Our stories are all different, but so similar too. I had my mammograms every year without fail, but surprised to learn in January 2007 that my DCIS hadn't been detected for so long that it was in danger of being invasive. I had 2 lumpectomies and they couldn't get clear margins; so the ps recommended a mastectomy of my left breast. I chose a bilateral--it was a very emotional ride to learn than in spite of your careful watching and annual visits that something like this escapes detection. And I never wanted to go thru this experience again. I had the sentinel node removed from each arm and they were clear. The DCIS was not invasive, thank goodness.
I was in the hospital from the minute I walked in the doors at 10 am one day to 12 noon the next day--and that's only because I live 1-1/2 hrs from the hospital that I was allowed to stay overnight.
I also went home with pain pills and drains. I alternated the pain pills with aleve and gradually eased off them. I had stitches only. Getting the drains out was a bit difficult, because one had started growing into my skin. The other was partly blocked and wasn't draining right, so he just took it out too.
I just couldn't make the decision to have the reconstruction, going thru more surgeries and more pain. And I didn't want silicone. I was disappointed that I couldn't get a TRAM, but I didn't have enough body fat in the right places to use. So I decided to not have immediate reconstruction. I wore t-shirts at home and tank tops with light jackets when I went out. I had my first mastectomy bra fitting at 5 weeks. The bras are ok; it's been 7 months, and when i get home from work, I just want out of the bra. There's pressure, skin sensitivity. Until very recently I still had tender spots mostly on my sides (I think that had something to do with the drains). My chest really wasn't sore after the first couple of weeks. I recently purchased 2 leisure mastectomy bras which are very soft and am more comfortable in the evenings after I'm home.
As it turned out, I didn't have to have chemo or radiation since the DCIS wasn't invasive and no lymph node involvement. I realize I'm very lucky in this respect.
I think the biggest drawback to not having recon for me is I'm uncomfortable if someone drops by and I don't have my prothesis on. This hasn't happened often, but it makes me really uncomfortable. But when I have the prothesis on, I can wear tank tops, just not deep v-necks. Also my underarm scars don't show.
It's a tough, roller-coaster experience. It's very scary, and I feel lucky that I have a very good prognosis.
It is something we can get thru and come out stronger in many ways. Keeping everything in perspective is important too. Like others have said, it's great to be alive!
Jan
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It's early Christmas morning....no one is up yet, and I find myself drawn to this site yet again... reading experience after experience - some are positive, some aren't....
I am so saddened by the fact we are on this journey together. Saddened that no matter how much support we offer each other, nothing is being done to prevent others from having to take this journey as well.
And I will have to hide this sorrow from my family, as I work (hard) to count my blessings and embrace the joy of being alive, of having family to share Christmas with....
....as life carries on
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