Breast Cancer Update

Parent Cafe
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<p>I’ve had a few pms about my mom, so I thought I’d post an update here. A couple of things have happened that have been very educational, so maybe her experience will help others.</p>

<p>Background: Originally, we were told Mom was an early catch and we were expecting minimally invasive surgery and treatment. Her ductal carcinoma turned out to be lobular not ductal and it was determined she needed a double mastectomy and chemotherapy. </p>

<p>She had the surgery three days after Christmas and it was pretty rough. One thing we learned was having this surgery in a teaching hospital is best because at a teaching hospital there are around the clock anesthesiologists which makes it possible to have an epidural for post-surgery pain. She is an recovery room RN and chose to have the surgery at her own hospital which is not a teaching hospital. She rec’d outstanding care in surgery and recovery, but post-op pain was a real problem. My friend, who also has lobular breast cancer, had this epidural with her mastectomy and was up and about the same day. In my friend’s case, she had five days of residual effect from the epidural and this made pain management much easier. Because of the pain, my mother was not able to move for the first 24 hours, and as a result developed a small pulmonary embolism which landed her in the emergency room the following week. So, lesson one - use a hospital where you can get the epidural. These epidurals are commonly used on most chest surgeries like open heart surgery, mastectomies, etc…but as I said, anesthesiologists must be on duty in case there are problems with the pump. My friend was in the hospital for two days, my mom for five days…not including the extra two days in ICU on blood thinners for the pulmonary embolism. </p>

<p>Second lesson. For the first 36 hours after surgery, my mother was really out of it and we quickly learned that a family member needed to be with her at all times. One time, we caught an LVN trying to move her from the bed into a shower after pushing dilaudid in her IV. Needless to say, that was an extremely dangerous move. She was so sedated and because her chest muscles had been traumatized in surgery, she did not yet have use of her arms to brace against a fall. That nurse got my wrath for the rest of her shift. Another time, one of the nurses made a mistake in her pain meds instruction. Again, a family member caught the mistake and it was straightened out. Never leave an incapacitated family member alone in the hospital. </p>

<p>Lesson three. Be your family member’s advocate…loudly if necessary. Docs were dickering around while my mom was suffering in pain. I finally grabbed her internist in the hall and gave him a list of pain meds that she wanted to take and made him change her instructions while I stood there over him. Of course, it was helpful that she is an RN and up on pain meds and side effects…but don’t be shy if something isn’t working.</p>

<p>Regarding her treatment, Mom will begin 12 weeks of weekly taxol chemo soon, then 4-6 big chemos following. Her hair will fall out shortly after the taxol chemo treatment begins, so we are wig-shopping soon. She does not have to have radiation so she will have reconstructive surgery after all of her chemo is completed. She will take a tamoxifen type drug daily for several years. Her prognosis is good, but it’s going to be a long haul. </p>

<p>Thank you to all of you who have kept her (and my friend) in your thoughts!</p>

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<p>Oh, ldmom, {{{{{gentle hugs}}}}} to both your mother and you…</p>

<p>I’m <em>really</em> sorry that your mother’s treatment turned out to be more invasive than had originally been thought. It sounds like she has been very courageous throughout her surgery and recovery, and I have no doubt that she will also approach her chemo with the same grace and strength. I’m just sorry that she has to be going through this at ALL…<em>sigh</em></p>

<p>I really appreciate the heads up you’ve given on this very important subject. I’m glad that your mom has such a wise and caring family watching over her and making sure that she gets the best possible care. That she herself is an RN must make this whole process in some ways easier, but in other ways harder. My heart really goes out to her, ld…</p>

<p>I will continue to keep your mom and your friend in my thoughts and prayers. Here’s wishing them both full and speedy recoveries. Take care of them both, sweetie, but also, don’t forget to take care of yourself as well.</p>

<p>Hang in there, and keep us updated, o.k.? love, ~berurah</p>

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<p>thank you for that</p>

<p>there was news today about breast tissue thickness and mamograms</p>

<p>I am going to cut and paste this post and send to my friends…unfortuneately, we will alll most likely deal with this or something similar and to have this information is so helpful</p>

<p>thank you for taking the time to share this</p>

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<p>ldmom:</p>

<p>Thank you for the update and for sharing the info. It is extremely helpful. My best wishes to your mom as she goes through chemo. She is lucky to have you care for her!</p>

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<p>Idlmom, thanks for your update. Big cyber hugs from the South Pacific.</p>

<p>You are so right about staying with a hospitalized patient. All patients need healthy advocates. Sometimes it makes sense to hire a private nurse to sit with the patient through the night.</p>

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<p>ldmom6, it sounds like your family really understands the patient advocate role. Good for you.</p>

<p>You are so right about the need for a family member to be present when the patient is out of it. There are just so many people involved in a patient’s care that miscommunications are almost inevitable. </p>

<p>I wonder whether somebody may have dropped the ball on your mother’s blood clot risk. When people have surgery where a period of immobility is anticipated (orthopedic surgeries mainly; I know this because I had an operation on my leg a month ago), they are supposed to prescribe anticoagulants routinely to prevent pulmonary embolisms. One would think that if a patient who wasn’t expected to be immobile turns out to be, that the anticoagulant would be prescribed. A week or so of taking Lovenox shots would certainly have been cheaper and less stressful than two days in the ICU.</p>

<p>Best of luck with everything.</p>

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<p>Ldmom, hang in there! I know how hard it is to watch someone you love go through this. It certainly sounds like you are on top of things, and your advice is great!</p>

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<p>I truly think the ball was dropped Marian. </p>

<p>As I said, she had wonderful care in surgery and recovery with her doctor and nurse friends/coworkers hovering and tending to her every need. But at the point she was moved to a floor, care became very spotty. And I have to consider that she had five docs on the case…breast surgeon, plastic surgeon doing the actual work, a cardiologist on standby to monitor her heart condition, anesthesiologist and her internist. I noticed a lot of stand-ins covering rounds due to the holidays and I think the communication was poor. The pain meds were definitely the culprit because they incapacitated her; but nurses will push the drugs according to orders only. At some point, a floor nurse should have said ‘this patient hasn’t moved in more than 24 hours, call a doc’. When Mom WAS able to speak, she asked to be taken off the iv drugs that put her to sleep because she knew she need to get up and walk. That’s when I finally got a doc to switch her to an oral med that didn’t sedate her. But by then, most likely, the damage was done and the clot had formed. </p>

<p>I think the expectation was that she would be up and about shortly after surgery and everyone operated as though that expectation was met. There was definitely a lack of responsiveness and creative thinking when actual circumstances did not meet expectations.</p>

<p>Thank you all for your kind words…please keep sending the good vibes. I’m a big believer in good vibes and prayers and so is Mom. She’ll take all she can get.</p>

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<p>ldmom, I wasn’t aware that your mom was having this surgery. I’m so sorry to hear that it was much more serious than first suspected. It’s so thoughtful of you to describe your family’s experiences, because chances are you are helping someone who is going through similar circumstances. I’ll be keeping you, your mom and family in my thoughts and prayers.
corona</p>

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<p>ldmom, good thoughts, vibes, and wishes to you, your friend, and your mom from Canada. You give excellent advice and I know it will help others who read it and who, undoubtedly, will go through what you’re experiencing now. My close group of friends (have been buddies since our kids were in nursery school) just celebrated the birthday of one who is a ten year survivor of breast cancer. I remember the year she was diagnosed, it was on Halloween, of all days and when we celebrated her birthday in early January, she worried that it would be her last. Well, it was a long haul but ten years later, she’s still here and very healthy and enjoying life! Best wishes and luck to you and I hope you’re keeping warm. Is it icy where you are?</p>

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<p>Lots of prayers coming your Mom’s way from me!</p>

<p>My good friend (age 43) is going through chemo right now for breast cancer (after a double masectomy), and she had a very similar experience with post-op recovery as your Mom (no blood clots fortunately, but much pain and spotty care after surgery). Your post will help more women than you know! Thank you!!</p>

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<p>ldmom - Thanks for sharing the information about your Mom - more prayers and good vibes sent to you from this corner of the world, to your Mom, friend and yourself…</p>

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<p>Thank you all so much! </p>

<p>I just re-read my posts and OH BROTHER…the spelling and the grammar…lol! I’ve got the very beginnings of the flu I believe…(fever, sore throat, backache and nausea)…and boy does it show in those posts! Between hosting a big, huge Christmas and spending a week out of town with Mom, I never made time for my flu shot and I do believe I may be paying the price. </p>

<p>I wonder if we could trouble CC to add a spelling/grammar check function… ;)</p>

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<p>My prayers are with your Mom, Idmom.</p>

<p>Please let me throw in a couple of things, however. I am not an oncologist, but I’m involved in diagnosis and treatment planning for breast cancer, and I also know a lot about what goes on in community hospitals.</p>

<p>First, anyone should ask about post-op pain management and embolism (DVT) prophylaxis - asking about these things makes you an informed health care consumer. This goes for any major surgery, not just mastectomy.
You do not have to go to a teaching hospital to get post-op epidurals, our community hospital provides the pumps, for example, where the patients control their own anesthesia.
You do not have to have bilateral mastectomy for lobular carcinoma, but some doctors will recommend it and there is literature to support it, although I think bilaterals are becoming less common.
Patients with lobular carcinoma often have more extensive disease than is initially seen on mammogram, and are less likely to be able to be treated with breast conservation.</p>

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<p>My prayers and thoughts are with you and your mom.</p>

<p>If you’re not yet familiar with it, the Lance Armstrong Foundation has excellent free resources – including a comprensive, suppportive notebook of information – for cancer survivors and their families. My friends who have had cancer have found the information extremely useful. </p>

<p>Here’s a list of their resources:
" Support Online
Learn about Cancer
Physical Topics include information about the physical effects that cancer or treatment may cause like fatigue and rehabilitation. </p>

<p>Emotional Topics include information about the emotional effects of cancer like body image, stress and communicating with your partner.</p>

<p>Practical Topics include information about managing everyday matters like insurance, employment and long-term planning.</p>

<p>Diagnosis and Treatment by Cancer Type Topics contain information and resources for those who have just been diagnosed or are undergoing treatment. </p>

<p>The LIVESTRONG Survivorship Notebook helps you learn about and organize your cancer experience.
Order your FREE Notebook</p>

<p>Download worksheets that can help you prepare for medical appointments and track medications and treatments.</p>

<p>Support by Phone.</p>

<p>LIVESTRONG SurvivorCare educates cancer survivors about new treatments in development, helps navigate the insurance system, offers counseling and support groups and provides help with the practical challenges of cancer, such as transportation and child care. </p>

<p><a href=“http://www.livestrong.org/site/c.jvKZLbMRIsG/b.594849/k.CC7C/Home.htm[/url]”>Livestrong;

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<h2>“Patients with lobular carcinoma often have more extensive disease than is initially seen on mammogram, and are less likely to be able to be treated with breast conservation.”</h2>

<p>True - In my mom’s case, the cancer was barely noticeable on mammagram despite the large size. There wasn’t a lump, but there was an area on the mammagram that looked a little unusual. Scintimammagram revealed the malignancy. Lumpectomy and pathology revealed that the area was much larger than expected (4 of 5 margins had cancer) and that the cancer was lobular not ductal. </p>

<p>The reason tissue conservation is difficult for lobular is because by the time it is detected it has usual grown quite large. In my mom’s case, they believe she may have had the cancer for as long as 10 years. (Lobular is very, very sneaky.) Also, MD Anderson docs estimate reoccurrence in lobular cases at between 40 and 50%. In the case of my mother, who is approaching 70, going through chemo again when she was even older would be devastating to her bones and heart health. She opted for bi-lateral because it was the best thing for someone of her age. Mom was left with a good amount of skin which will make for a very nice reconstruction. My friend was not so lucky…and because she will have radiation, she will need to have a flap instead of implants.</p>

<p>Also, true about the hospitals that use pumps. My mom’s hospital actually had epidural pumps and the nurses had been trained to use them. But they don’t have enough anesthesiologists willing to be on call should adjustments need to be made. They tried it for awhile a few years ago, but the docs shut it down because they were tired of middle of the night calls. Also, anesthesiologists need to be pretty skilled to administer these type epidurals…it is definitely an art. So, clarification…look for a hospital, ANY hospital, that offers epidurals as an option for pain management and does a lot of them. It is worth it.</p>

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<p>ld,</p>

<p>thanks for the update on your mom. Wishing her a full and speedy recovery</p>

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<p>Sounds like a case of Murphy’s law- your mom knows this one- all people in and related to people in medical professions are bound to have more things go wrong than the rest of the population. I do understand her opting for her hospital. Best wishes to her and you. BTW, good RR nurses are the anesthesiologist’s best friends.</p>

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<p>lol wis…that’s exactly what her oncologist said when she described her reaction to the Bovie in her first surgery. He said ‘but of course you had complications, you’re a nurse!’…lol! </p>

<p>Thank you for the good thoughts. She was supposed to retire from that RR in January, but will now stay on for insurance reasons. Soon she’ll be through this and back on the sailboat enjoying retirement though!</p>