June 8th marked a year since my diagnosis with leukemia.  I have experienced a lot in the past year, physically, mentally and spiritually.  My biggest surprise has been a more personal understanding of the permanent side effects of treatment.  Sure, I had heard of chemobrain and believed it to be real, but now I know what having chemobrain feels like and how it affects my daily life.  Numb toes and neuropathy may be a small price to pay for being here, alive and kicking, but it is a constant reminder of what I have been through.

I have given a lot of thought to the collateral damage that results from cancer treatment. The fact is, it is rarely talked about and only starting to be acknowledged by the medical profession.  I think part of the problem is that doctors look at the survivors and compare them to the people who died.  Their reaction is, “Why are you complaining? You are lucky to be alive!”  Meanwhile, survivors compare themselves to how they were before getting cancer and notice all the damage that has been done by the treatment.  Yes, we are lucky to be alive but wouldn’t it have been better not to get cancer in the first place?  Of course! Yet there doesn’t seem to be much appetite in the research community for moving beyond the cure to focusing on prevention or finding the cause.

One of our goals at the Dr. Susan Love Research Foundation over the next year is to  document the collateral damage that current therapies cause and bring the true price of the cure to light.  Until we testify to the side effects and complications we experience, there will be little incentive  to look for prevention and the cause of the disease.

All you survivors—you who have experienced the physical and emotional toll of cancer treatments–please join the Health of Women (HOW) Study where we will be collecting data about your health, treatment and later this year, side effects.  And those of you who have not had breast cancer or any cancer, please join as well so that we can figure out what might be the trigger that causes this disease.  We need all of you to share your histories, help quantify the side effects of treatment, and to add your voices to the call for more emphasis on research into prevention and cause.

As many of you have heard me say, if we could figure out the cause of cancer of the cervix and develop a vaccine within my professional lifetime, we can do the same for cancer of the breast.  I am sure we all are grateful for the treatments that we have received, but I am also sure that we all would have rather not had cancer in the first place.  We can be the generation that ends breast cancer if we all join the effort to make it happen!

Share →

68 Responses to Wouldn’t It Have Been Better Not To Get Cancer In The First Place?

  1. Peggy Anderson says:

    I had extra radiation and have scar tissue and arm stricture problems. I had three lumpectomies on the same breast so I have very painful mammograms. i go to the Mayo Clinic for these. I was on Armidex for 9 years and went off this year when I got borderline diabetes, high cholesterol and triglycerides wouldn’t go away, liver enzymes went up. I have other issues too. B-12 deficiency, low potassium. I never had any problems in 9 years, until this year. I do think being over weight has not helped matters. Ever since I have been on Metroform and off of Armidex I have been losing weight.

  2. Burcu Ozdemir says:

    Before I started chemotherapy I talked with friends whom has gone trough the same experience. I was adviced to take MetaNX during chemotherapy to prevent neuropathy and I never developed neuropathy. I believe it protected me from getting the neuropathy. I know others with the same experience.

    I would like some one to do a study to investigate if this was just a personal experience or if really Meta NX if taken during chemotherapy is preventing this most annoying complication of neuropathy

  3. Sadly the medical community holds out these barbaric treatments as a cure but they are not. It is not known what causes cancer or what can cure it, but doctors prey on our fear and only offer a nuclear option that completely devastates our lives. After one round of chemo (A/C) and four days of radiation, I abandoned treatment – it was horrendous and would have killed me had I continued, and I still have side effects. I was diagnosed with triple negative breast cancer and clear nodes (0/6), IDC, IIA, G3 in Apr 2012. I’m always amazed doctors endorse things like diet and exercise as effective for prevention, but when disease sets in, strengthening the immune system is abandoned in favor of toxic treatments – so much for “do no harm.” I will trust my intuition more and modern medicine much less going forward.

  4. Cynthia says:

    This blog is a miracle! Dr. Love, thank you for acknowledging the psychologically and physically devastating effects of cancer treatment. And thank all of you for sharing. We need to voice our quality-of-life issues to improve treatment for future patients. Yes, we’re all grateful to be alive, but we’re also trying to adjust to sudden and drastic changes to our bodies and our very sense of self.

    Like a good girl, I tried to embraced the “cancer is a gift” philosophy during my treatment for breast cancer (lumpectomy, chemo with TAC and radiation). Four years later, my “treatment” is the gift that keeps on giving: permanent alopecia universalis, lymphedema, cellulitis, osteoporosis, … and a suspicion that my chemo triggered arthritis.

    None of these are listed as possible side effects on any cancer websites. When I’ve tried to speak up, I’ve been shamed into silence by the healthy, dismissed as “lucky to be alive” or my favourite: “It could be worse.”

    But the greatest injury of all was not being told the truth. As anyone who has chemo knows, they make a HUGE deal about losing your hair, but every website reassures, “Don’t worry. Hair always returns.” That’s patently untrue and there’s a growing body of research to prove it.

    My dear friend was not told all the facts either. She developed Acute Myeloid Leukemia, a secondary cancer caused by her breast cancer chemotherapy. “Back,” she said, “when we were so naïve about the effects of treatment.” She died in February. She no longer has a voice.

    I’m so grateful to have a forum to speak up. Alopecia erased my very sense of self, but, thanks to all of you, I no longer feel so invisible.

  5. Donna Hill says:

    It has been 8 years now since my breast cancer treatments, two surgeries, chemo, and radaion. I did so well during that year I felt very lucky. That was until 3 months later when a slew of issues started cropping up. The neuopthy pain was unbelivable. At first I had no idea what was going on. It traveld throughout my body. The pain that would hit my feet was so bad it would bring me out of my seat at work. My hands, couldn’t hold on to anything, no strength and they would just lock up. I still have pain on my left side where I had the treatments. I’ve been on Lyrica for the past 6 years now, and it helps but I still have no energy. The weather changes can do me in. I can’t do most of the thing I use to. The hot flashes were miserable. They lasted 6 years. I can go on and on… The conclusion, this is how my life will be from now, and I’m alive, just not as alive as I was before all of this.

  6. pauline says:

    Have you got a few hours!!!! I would like to talk to others who share the same side effects from chemo and hormone treatment. I really think that if you had a register that could put women in touch with each other in some way, that have common side effects, the reason for this is as follows. Its been 5 years since chemo for breast cancer. Before I begin, I am otherwise happy and extremely grateful to be alive, but, and those of you with shocking side effects will agree that it is a very big BUT!!!!!!!! But how I have to live my life now is doable but difficult, and I have had to become very strong to deal with it. I don’t take the recommended drugs any more once I found out that they can cause a different type of breast dance and other cancers especially after being on them for longer than 5 years. Everything I do has to be planned ahead even any sexual contact with husband. Why because I have hot flushes that occur every 45 minutes every day without fail. At night I have them every 2 hours until 1am and them every 45minutes again. If they were simply only a hot flush, it would be easy but because of chemo I have what they term severe menopause, and the hot flushes bring with them symptoms like nausea,chest pain, both hands and feet pain a lot and my whole body hurts, I feel drained of energy, and overall a feeling of being very unwell, then there is the brain thing that happens every time just before you get one. One last thing because of chemo I am unable to have sexual intercourse any more, I can not even have a pap smear because of the damage the chemo has done. None of these things were told to me except that “you might experience some hot flushes” I now have inflammatory vein problems in the only arm available and am loosing access one by one to these veins when I go for simple blood tests, this will be probably from chemo. Have issues with diverticulitus now. I feel that women with permanent side effects from chemo need a voice. I also think that we need to get together to help each other. I would like to help other women with similar problems. I was diagnosed with early breast cancer with no nodal evidence. Before I made the decision to have chemo I tried to research as much as I could online (I have some v\medical knowledge) but the drug companies have many websites and it was mostly all one sided. Sometimes you wonder how much Litigation controls the situation. If I knew what I know now I would have approached the decision differently, however there still isn’t an answer, it is personal preference mixed with a good deal of guilt for your life ahead. A bit like the toss of a coin!! Do I or don’t I ? Thanks for listening

  7. pauline says:

    Have you got a few hours!!!! I would like to talk to others who share the same side effects from chemo and hormone treatment. I really think that if you had a register that could put women in touch with each other in some way, that have common side effects, as I feel I am ignored by some doctors and to the extent that I don’t tell them about my side effects any more because of this kind of treatment.
    Could there ever be a Treatment Centre for side effects from Cancer??????
    Its been 5 years since chemo for breast cancer. Before I begin, I am otherwise happy and extremely grateful to be alive, but, and those of you with shocking side effects will agree that it is a very big BUT!!!!!!!! But how I have to live my life now is do-able mostly but difficult, and I have had to become very strong to deal with it. I don’t take the recommended drugs any more once I found out that they can cause a different type of breast cancer and other cancers. The drugs they recommend for the hot flushes, may only effect 50% of them but definitely come with a variety of some quite horrible side effects. I am allowed to say ‘no’ aren’t I?? I am over side effects and I don’t need more of them.
    I have hot flushes caused by Chemo. Everything I do has to be planned ahead even any sexual contact with husband. Why, because I have hot flushes that occur every 45 minutes every day without fail. At night I have them every 2 hours until 1am and them every 45minutes again. If they were simply only a hot flush, it would be easy but because of chemo I have what they term severe menopause, and the hot flushes bring with them symptoms like nausea,chest pain, both hands and feet pain a lot and my whole body hurts, I feel drained of energy, and overall a feeling of being very unwell, then there is the brain thing that happens every time just before you get one. I had neuropathy in my hands and have had to have surgery, they are good now. One last thing because of chemo I am unable to have sexual intercourse any more, I can not even have a pap smear because of the damage the chemo has done. None of these things were told to me except that “you might experience some hot flushes” I now have inflammatory vein problems in the only arm available and am loosing access one by one to these veins when I go for simple blood tests, this will be probably from chemo. Have issues with diverticulitus now. I feel that women with permanent side effects from chemo need a voice. I also think that we need to get together to help each other. I would like to help other women with similar problems. I was diagnosed with early breast cancer with no nodal evidence. Before I made the decision to have chemo I tried to research as much as I could online (I have some v\medical knowledge) but the drug companies have many websites and it was mostly all one sided. Sometimes you wonder how much Litigation controls the situation. If I knew what I know now I would have approached the decision differently, however there still isn’t an answer, it is personal preference mixed with a good deal of guilt for your life ahead. Do I or don’t I ? I am grateful to all the Doctors and Nurses who have been helpful to me on my journey through B\C Thanks for listening

  8. Nicole Bolt says:

    I was diagnosed with bilateral breast cancer in 1989, had a lumpectomy, 6 months of CMF chemo, followed by bilateral mastectomies, 5 years of Tamoxifen, and reconstruction 8 years later. I was one of the early patients treated with Tamoxifen. In those days they did not acknowledge that depression was a possible side effect of this drug. I suffered for 5 years and only realized it was the drug that caused it after discontinuing it. In addition, I had fast growing cataracts removed when I was in my late 40’s. I was told they were caused by the Tamoxifen. I am a survivor of 24 years.

  9. Mona V. says:

    Dr. Love: Thank you so much for this blog and the focus on this aspect of the “collateral damage” of BC therapy. Like so many, I was also induced into surgery, dose-dense chemo, reconstructive surgery, radiation, hormone therapy for many years, etc. I was somewhat aware of the risks of the individual treatment modes but – like others with fairly young kids and families – I felt like I had no right to “wimp out” and needed to accept the recommended therapy in order to maximize survival capability. It is obvious that oncologists (and other medical specialists involved with BC) tend to underestimate the side-effects of treatment, and gloss over the profound long-term negative consequences, in an attempt to encourage patient acceptance of toxic therapy. Undoubtedly, this approach stems from the belief that adherence with accepted protocols will increase “their” survival statistics. There is certainly a self-serving aspect to the over-zealous encouragement of patient participation with these harsh treatments. This seems especially evident when individual oncologists – including some who are the experts in the field and who have the role of creating those protocols – have specific financial associations and lucrative incentives related to specific treatments. (This is largely associated with chemotherapy and the pharmaceutical industry.) It is particularly insulting when the same companies who produce those toxic substances, are now paying experts to provide “studies” that are aimed at discrediting other studies (and patient contentions) that document significant side effects, like chemo-brain.

    From my perspective, at this point in time, I do not believe the loss of “quality of life”, was a fair trade for the 8% increased survival incidence, which the chemo provided. I realize that over the last few years oncologists have become more selective and less aggressive with chemotherapy, especially for the less advanced breast cancers. However, this is “too little” and “too late”. Targeted therapy, with reduced tendencies to cause collateral damage, should have been at the forefront of development – rather than systemic poisons – despite the more accessible profits for pharmaceutical companies.

    Like others, I share many of the physical complaints related to the therapy, like severe musculo-skeletal pain and fatigue. I feel that the chemo acted to age my body, by at least by 10 or 15 years, from my pre-chemo status. But the most troubling side effect, by far, is the chemo-brain. I have learned to use many of the “tricks” to live with this problem, but there is no question that it has curtailed my career and many aspects of my life. Oncologists are only beginning to be candid about this side-effect, and they offer little help to patients who struggle with this in the aftermath of their treatment. This needs to change.

  10. Sally Lastrina says:

    Reading your blog, and all the comments, drives home the fact I am not alone. The oncology nurse told me I got every possible side effect during chemo treatments, now I have every possible after effect one year later. My ‘ new normal.’
    Dr. Love, you should direct a movie. Call it Unsilencing The Lambs. Too bad it takes all this for us to find and unify our voices. The insanity has to stop, other treatment options need to be researched and they should NOT be funded by pharmaceutical companies.

  11. Faye Gregory says:

    Dr. Love’s Book was the first resource I turned to when the doctor told me I had a lump in my left breast in October, 1997. I was 57 years old.When I saw the surgeon, I was well prepared to choose my options. After a mastectomy, I was told Stage III w/ 21 involved lymph nodes. I chose to have heavy doses of chemo , 6 weeks of radiation and 5 years on Tomoxifin. Not sure why, but I was never sick during chemo – never missed a day teaching my high school classes – arranged chemo on long weekends. Missed 5 days after surgery only because of the drain. Shaved my head and told the world what was going on. Fantastic support from my family, friends and students.

    At my 5 year mark, walked the Avon 3 Day from Lake Lanier to Atlanta! Then took retirement and was a cowgirl in Wy, a volunteer for BVS for a year and then to S Africa for a 3 week photo safari!
    Moved to a farm in 2002 and began fostering abused horses! Also enjoyed being nanny to 3 wonderful grandsons!!!

    Not sure why – strong and healthy body going in, wonderful small oncology practice who took such good care of me, constant support from family, friends and HS students, too busy living my bucket list – whatever – I had some mild side effects but nothing like most of you experienced. At 74, I live an active live – have seemingly beaten cancer so the doc has me watching BP and keeping heart strong. I surprised everyone when had no recurrance and have been strong and vital for the past 16 years.

    My knees were knocking when I went in for first chemo because of all one sees and hears, but my experience was easy. I would love to know if there are others for whom the experience was not so bad.

  12. Janice says:

    I had triple neg. stage I or early II (depended on who you talked to) left breast cancer and had a lumpectomy on June 21, 2011. I was to have 4 treatments of one cocktail and then 4 of another. The second 4 would give me tingling in my toes. I took one of the second 4 treatments and had a horrendous side effect. for 4 days I felt like I was in a pin ball machine and someone was shooting hot white pin balls into my bones and when they hit they would explode in pain. Every 30 seconds, in the middle of my leg bone, in my elbow, my back, I never knew where they would hit. It was a weekend and the doctor couldn’t call in a narcotic on a Friday night. I suffered until Sunday when I remembered I had a narcotic pain med. from my surgery that I never used. It helped some but it was Tuesday until I felt better. I quit chemo at that time. I felt 90 instead of 62. I still have some leg pain, especially when I sit and sometimes my knees hurt when I get up. I am tired off and on for no reason and I got cataracts from the chemo. None of this stops me from doing anything but they are just reminders. I wish I had know about this blog 2 years ago. I felt so controlled by everyone at that time.

  13. Jill Ruge says:

    Dear Dr. Love,

    We’ve met in Cambridge and again when you were caring for a friend of mine at BI. I was diagnosed with BC March, 2012. Stage 1, Grade 2 hrt+ estrogen+ , a micro metastasis in one of two nodes. I cried when I was told that I needed chemo- not for the loss of my hair – but the loss of my house. After the economic downturn and crash of the housing market, my self employed builder self was just climbing out of an economic hole when life as I knew it came to a halt. I knew I’d have to sell my house. I deal with bankers and lawyers and knew if I looked sick, I wasn’t a great candidate for the financing I needed to carry on my business.

    I’ve made decisions to minimize my treatment-at every step of the way. TC rather than ACT. Breast reduction rather than reconstruction. Everyone should be given that choice if they’re concerned about symmetry. Since the margins were bigger I had five weeks of radiation, skipping the 6th week boost. I did Herceprtin for 9 months- a year was expected. It took me four days to get back in gear after treatment. I read that in Finland, New Zealand, Canada, and the UK treatment was every three weeks for weeks, not months. When I quit taking Herceptin my oncologist expected me to promise to take my aromatase inhibitor daily – for 10 years. Anastrozole caused my leg muscles to cramp. Letrozole, produced bone pain in my lower leg that felt like what I assumed a fracture would feel like. The Exemestane side effect was crippling joint pain – but who knows which treatment really has caused my knees to lock up. I’m not taking an aromatase inhibitor- will it screw up the data and research? I can’t function crippled- and my balance isn’t what it used to be. I’m 62 and I know the treatment has aged me. And chemo brain, Is it depression? I expected to be back in gear and gaining momentum by now. I don’t like to talk about it or to admit it.

    I was always more concerned about the effects of treatment than the cancer – And have always thought that I was over treated! I questioned it all along the way- my PCP giggled when she reviewed my chart and said that I was described as an “empowered patient.” I wish I were empowered enough to eliminate the profit and greed that propels the cancer industry.

    http://well.blogs.nytimes.com/2013/07/29/report-suggests-sweeping-changes-to-cancer-detection-and-treatment/?_r=0

    Time will tell – Thanks for listening.

  14. Ida Harding says:

    I have been diagnosed and treated for two different cancers in the last two years. The first was stage 1 follicular lymphoma. I was given chemo and radiation. The following year I was diagnosed with stage 2 breast cancer and got a lumpectomy and radiation. Am now on Arimadex for five years. I am writing in this blog because someone asked for others to write who had had an easy time with the treatment. I went thru both sets of treatments with very little problem. I had a great positive attitude, lots of friend support, acccupuncture and also support from the Cancer Support Community (yoga, meditation, support group, tai chi, nutrition classes, etc.). Maybe I was just lucky, but I had no nausea at all, and little other side effects other than tiredness during my treatments. SInce then, I have suffered a lot of “chemo brain’ symptoms, numbness in my fingers and feet, and continuing need for 8-9 hours of sleep a day. Also have had one episode of calcium buildup in my knee and one episode of tendonitis. I have no idea if that is related. But I am quite concerned about the possible long term damage to my lungs due to the chemo and the two rounds of radiation. Of course, everytime I have a pain I think it may be cancer or a side effect of my treatments. I don’t think that will go away for a long time. My lymphoma is treatable but not curable, so it may return. I just asked my oncologist how he would treat it the next time, and he said the same way. I think I would be reluctant to get chemo again, so I just hope I don’t have a relapse.

  15. Another1 says:

    Yeah, count me in as another one who wonders if the treatment is not worse than the disease.

    Daily I see a scarred body, reduced range of motion, weakened muscles, poorer balance, slower thinking, lower energy. My bone density was above average prior to treatment. In less than 2-1/2 yrs on an AI, I become osteoporotic. Physicians have told me: “You’re not at risk for lymphedema. Hah! I could go on, but I’m sure those reading this understand. Those that don’t need to listen to us.

  16. Kirsten Sippel-Klug says:

    In response to Faye’s question…..
    I was also one of the lucky ones who seemed to breeze through chemo and radiation. I was able to work part-time through chemo and full time during radiation. Of course, that was with a lot of support from many different family members. After bilateral mastectomies and unilateral lymph node removal, I am back to yoga and even managed to make it through several TRX classes. It’s clear that my cardiovascular health is still on the mend, but not to the point that it has stopped me from being able to participate in any activities. I continue to actively work on checking off things on my “bucket list”.

    Chemo-brain has been my only physical struggle post-treatment. It has cleared up a bit, but I am not back to my pre-morbid self. It is frightening at times. My co-workers are understanding, but I truly wish that I were back to myself.

    For me, the emotional recovery has been harder and more complicated than the physical recovery.

  17. Laurie Campbell says:

    Is there a correlation between radiation and coronary artery disease? I work with cardiac patients and some believe this is true. As cancer runs in our family; I read about the plant based diet; supplements and herbs that help to prevent and treat cancer. Dr Burzynski, Dr. Blaylock, and Dr. Nicholas Gonzalez. seem to be the pioneers treating cancer through nutrition/supplementation successfully without the side effects. Dean Ornish, MD, the leader in reversal of heart disease, has done preliminary studies on reversing early prostate cancer. I’d love to see your GREAT foundation now fund prevention of cancer!

  18. Carol Thompson says:

    I was diagnosed with DCIS 9 years ago. I needed two lumpectomies as the first didn’t have clear margins. My oncologist said as the cells were contained I wouldn’t need chemo but had radiation and 5 years of Tamoxafin. The only aftereffect is burn marks from the radiation and tightening of the very large scar. Because so much tissue was removed in the right breast the difference fro the left is noticeable. Mostly I don’t care. I am thinking of getting tested for the BRCA gene to look at the risk for ovarian cancer. This may sound strange but I am more distressed at becoming diabetic than having DCIS.

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>