Side effects can happen much later

Two years out since the mastectomy.  And a lot of menstrual bleeding.
First episode was in January. Very light bleeding that went on for three weeks. Since this length is not normal, and I am taking Tamoxifen this raises all sort of fears. The radiology report after an ultrasound talks about how thick the uterine lining is for a post menopausal women. Hmm? Postmenopausal? I am clearly not (despite being 54 years old). Does tamoxifen extend the menstrual years?
Actually, after an acupuncture treatment the bleeding stopped within a day. Very cool!

Second episode was in April. Lots of bleeding. After two days of going through lots of pads I called the doctor and was told to go the ER. Another ultrasound. This time the uterine lining was a whopping 6 mm less than before, although still thicker than the average postmenopausal women. Perhaps this classifies as a D&C with out the D or the C. I like that!

The time period from January-April was also accompanied with back pain episodes that seem to come out of nowhere.

I feel better on 10mg Tamoxifen compared to 20mg which is the typical prescription. Is 10 mg just a good at preventing recurrence with fewer side effects?

Excerpts from the medical literature: 

Tamoxifen blocks estrogen for the breast, but does all sorts of things in other tissues ("exerts estrogenic actions"). The dosage does not seem to matter, just the longer duration and accumulative dosage.

Reference: Hu et al. Molecular mechanisms of tamoxifen-associated endometrial cancer (Review). Oncology Letters 9: 1495-1501, 2015

Extending Tamoxifen use to 10 years (ATLAS trial) may not be as good as taking Tamoxifen for 5 years and then 5 years of AIs (NSABP B14 study). I hope I can stop taking anything after 5 years!

Reference: Huiart et al. Tamoxifen therapy for patients with breast cancer.  Correspondence. The Lancet. 381 June 15, 2013

Warm flashes

Hot flashes have arrived! I was hoping to avoid them, since I have had no problem even though the menses have become irregular, and my sister had no problem. It may be possible that Tamoxifen speeds up the natural process of entering menopause.
They started mild, just like blushing, so it took two weeks to recognize for what they are. At first they were few and far in between, e.g once during the day, twice at night, but now they are visiting regularly, at least hourly, and during every kind of situation, including while talking with others. Sigh....    At this point they could be described as warm flashes.
It is said that they stop when hormonal therapy stops. FOUR YEARS of this???
What may help:

• acupuncture (already doing it, it didn't prevent it)
• diet without alcohol or spicy foods (already doing it)
• relaxation (stressful situations/thoughts can bring this on, so be sure to have  regular meditation practice)
• drugs (treat side effects of drugs with more drugs, possibly on the WADA list)

Update from the future: The warm flashes only lasted about 6-7 weeks. 😊

Tamoxifen Blues

Tamoxifen is prescribed for premenopausal women, when the breast cancer is determined to be estrogen receptor positive. It is to be taken for 5 long years (or longer, if newer studies are to be believed).

Every morning I look at the little white pill and have to remind myself of the abundant scientific evidence from the last 30 years to prevent recurrence, so that I work up the will to take it. But I resent the side effects that accompanies this medication. Five years of diminished quality of life.
There is a whole host of side effects: https://www.drugs.com/sfx/tamoxifen-side-effects.html Side effects that I experience are

• brain fog/memory lapses. Reduction in cognitive function is very disturbing! Sometimes this may lead to forgetting to take the little white pill.
• red face. I mean really red. Chin and up red, throat and down white. Heat, cold, stress, thinking thoughts that make me tense, and more, can bring it on. This is really weird at the work place.
• depression
• dry skin and dry, itchy eyes (terrible in my job having to work on a computer a lot)

I must admit that in the beginning I skipped some doses, and then for a while I took only half the dose (10mg). It is a long acting drug, and will stay in the body for months after stopping, so it is not terrible to skip a day. 

What may help to prevent such side effects:

• relaxation (to remove stress)
• plenty of water (2.5 liters a day, red face points to inflammation processes)
• lots and lots of exercise (it is always better afterwards even if only for a little while)
• some women swear by supplements: vitamin D3, vitamin B12, magnesium (I don't know, but I take it anyway)

For somebody who has never used supplements or avoided putting foreign substances such as medications in my body, this is a downer. The alternative is to take more drugs to combat the side effects.  Another drug is Aromatose inhibitors (AIs) prescribed for postmenopausal women but comes with its own side effects. Common is the drastic reduction in bone mineral density. I am weightlifter! This activity might make fractures more likely when taking AIs. And switching medication will require another application to the US Anti Doping Agency and a lengthy process to get a Therapeutic Use Exemption. These drugs do nothing for performance enhancements, but are on the forbidden list because they mask side effects of steroid use in men.

The side effects are supposed to get better the longer one takes the drug. Let's hope!

Do long flights increase the risk of lymphedema?

Recently I traveled oversees on a 7-8 hour flight. I did not wear a lymphedema sleeve. I don't have one. I do have a long-sleeve compression shirt that I carried with me for weightlifting training. But I did not wear this either. Instead I frequently used lymph massage, just in case. When traveling one has to be careful about things surrounding the flight, rather than air cabin pressure. Namely being careful with carrying too much stuff or lifting heavy luggage, making sure to move, and staying hydrated.

Air travel and lymphedema has been looked at in an observational study for women treated for breast cancer traveling to compete in dragon boat races in Australia. There are many factors, such as wearing lymphedema sleeves, cabin pressure, hauling luggage, medications, and more. The conclusion of the authors was that air travel did not cause significant change in BIA ratio (to check on increase in lymph fluid) in the ‘at-risk’ arm for the majority of breast cancer survivors who participated in dragon boat racing, and that the wearing of a compression garment for women without lymphedema was unlikely to be advantageous or harmful.

Reference: Kilbreath et al. Effect of air travel on lymphedema risk in women with history of breast cancer Breast Cancer res Treat 2010; 120:649-654

Self manual lymph drainage (MLD) for arm

Lymph massage requires gentle pressure that does not involve muscles. A "stroke" is a circular movement that stretches the skin without the hand sliding, and then the pressure is released, and the hand is moved to the next starting position.

This can be done twice a day, e.g. mornings and evenings (about 10 minutes). The description is for a seated position.

Each stroke is repeated 5-7 times, usually by the hand of the unaffected side.

Step 1: Activate the lymph drainage in neck, under arm, and in groin.
1. Place hand with fingers at collarbone, so that pressure is directed toward the neck.
2. Place hand of the affected arm with fingers directly under the axial of the unaffected arm, the pressure is directed downward.
3. Place hand of the affected arm on thigh with fingers point toward the groin. Circular movements with pressure towards the belly.

Step 2: Redirect lymph flow from affected to unaffected axilla
4. Use hand of unaffected arm and softly stroke with from affected armpit to the other side.
5. Place hand on chest and use circular movements from one side to the other in several placements

Step 3: redirect lymph flow from axilla to groin
6. Lift affected arm and place hand behind head. Use unaffected arm to make circles form armpit to groin in several placements

Step 4: redirect lymph flow from forearm to shoulder
7. Place arm on pillow. Soft stokes covering the entire arm from back of hand to shoulders directing towards the neck
8. Lift arm to side and sue hand to stroke from inside upper arm to outside
9. Place arm on pillow and turn palm of hand upward. Use circular motion towards the upper arm.
10. Repeat outside portion of arm (#7)

Yoga

There are many styles of yoga, my own practice encompasses both Iyengar yoga (with yoga props and focus on alignment) and Kundalini yoga (with physical postures and movement, breathing exercises, and meditation).

Stretching exercises by the American Cancer Society advises not to stretch too soon or too aggressively to avoid seroma formation. However I have found stretches to be helpful when fluid built up after drain removal. One possibility are passive stretches, for example placing the arm overhead on a pillow.  The fish pose is a nice chest opener, when it gets uncomfortable to lie on the back for much of the time, and it stretches the scar.

Restorative yoga has been very helpful immediately after surgery and it is still part of my daily practice,  both for relaxation and stretches [ref: Lasater JH]. There are some earlier blog posts with photos: restorative yoga.

For about 3 months after surgery I avoided yoga poses that are static with arms lifted and held (e.g warrior pose)  or weight bearing exercises on arms (e.g. downward dog, sun salutation, planks) due to the lymphedema risk as discussed in the guidelines by Step up, Speak out. Since I continue to get swelling under one arm (site of the sentinel lymph node excision and site of a fine needle aspiration of one of the lymph nodes before surgery) when doing arm weight bearing exercises, I continue to be cautious. Two studies that motivated my choices:

• A Pilates study with 15 women who were at least 6 weeks post surgery mentions the lymphedema risk, since the DVD provided had statically held arm exercises [ref: Stan et al]. Thus I preferred to focus on moving exercises. 
• A yoga study after breast cancer diagnosis with 30 women showed positive effects (relaxation, feeling of wellness, stress reduction) [ref: Pruthi et al]. Participating women had positive comments about the breathing exercises during their initial meetings with a yoga therapist. There are many yoga breathing meditations that may be helpful. A previous blog post describes a breathing meditation from the Japanese system of Reiki.

Kundalini yoga is the yoga of awareness. It should not be confused with weird things written about "Kundalini" on the internet which is a generic term. I restarted my practice 3 months after mastectomy, since it can be vigorous, and I wanted to focus on other exercises and meditations first. My favorite yoga set is the basic spinal energy series. The number of times or length of time for each exercise can be reduced. For example, 26 or 52 instead of 108 repetitions is fine or doing each exercise for 1 minute.  This yoga set includes spinal flexes and shoulder shrugs that are also mentioned in an article for cancer patients to reduce fatigue [ref: Shannahoff-Khalsa DS]. The article includes breathing meditations, but it would be best to find a Kundalini yoga teacher, if you don't have experience with this style of yoga.

References:

1. Judith H Lasater. Relax and Renew. Shambala 2005.
2. Stan DL et al. Pilates for breast cancer survivors. Clin J Oncol Nurs. 2012 Apr;16(2):131-41.
3. Pruthi S, et al. A Randomized Controlled Pilot Study Assessing Feasibility and Impact of Yoga Practice on Quality of Life, Mood, and Perceived Stress in Women With Newly Diagnosed Breast Cancer. Global Advances in Health and Medicine. 2012;1(5):30-35. [link]
4. Shannahoff-Khalsa DS.  Patient perspectives: Kundalini yoga meditation techniques for psycho-oncology and as potential therapies for cancer. Integr Cancer Ther. 2005 Mar;4(1):87-100. [link]

Scar management

"It is easier to prevent a scar than to reduce it once it is formed. [...] Scars can take longer to heal if not managed." (Kase et al)
This is interesting.  After sleeping or resting in one position for a longer period of time post surgery, it felt like the wound/scar is "glued on wrongly". This is likely the effect of collagen formation. Doing something that aligns the collagen properly may help the healing so that the scar integrates well with the skin and prevents future contracting. An example, of a scar not integrating well with the skin is a hypertrophic scar, that has a raised, red appearance.

A few approaches (more here: scar minimization):

• Scar massage means using fingers to stretch the skin/scar vertical, diagonal, and pulling the skin in opposite directions to either side of the scar. This can be done after the surgical wound has healed anywhere between 3 and 6 weeks depending on sources.
• Mechanical pressure means applying pressure on the scar such as using a silicon gel strip,  using a spoon to push down on the safer and pull along, or using kineseo taping.
• Acupuncture
• Stretching exercises to retain the range of motion.
• Hydration means applying oils or creams, often with Vitamin E to the skin.

Scientific evidence: There is anecdotal evidence for these treatments. But does this apply in general? Scientific studies indicate that scar massage has no effect on scars (Shin et al).  Furthermore, the skin is a very efficient barrier, so creams may not be helpful either. There is a discussion on the importance of relaxation and breathing and complementary therapy approaches to scar healing, but more evidence based research is needed (Zanier et al).

There are no medical protocols for scar management. So it will come down to individual preferences.

What I liked: I have stretched from the very beginning and believe this helped the wound to heal in a way so as not to restrict movements when scar tissue is formed. Acupuncture was part of my recovery, so this may have helped. In particular, there are places where there is NO scar. The acupuncture therapists says this is along the stomach, bladder, and kidney meridians.  I exercise a lot and sweat. It is gratifying that initially numb areas produce sweat after while. I take it as a good sign for healing.
What may help:
I did not know about scar massage until 11 weeks after surgery. However I have not noticed a difference 5 weeks later. But it is something that is easy to do at no cost and won't hurt. Possibly it is helpful to start earlier after surgery. Small Kinesology taping strips vertical or diagonal feel good.
What may not help:
I am not convinced that silicon strips or creams or other commercial products are helpful. The strips cause itching when left on a few hours. They are pricey, using it daily for months and getting new strips every 2 or 3 weeks. I would not buy them again.

Appearance at 3.5 months post surgery: some small stretches where the scar disappeared (along the meridians, see above),  raised and red at other places. I am not overly bothered about the appearance as long as the scar tissue is flexible enough for exercising and stretching. They look good and I wear them proudly. There is beauty in scars!


References:
Kase et al  Kineseotaping for Lymphoedema and Chronic Swelling. Kineseo IP, LLC 2014
Shin et al.  The role of massage in scar management: a literature review. Dermatol. Surg.  2012 Mar;38(3):414-23.
Zanier et al. A multidisciplinary approach to scars: a narrative review. J. Multidisciplinary Healthcare 2015; 8: 359-363

Tamoxifen fears

I felt on top of the world: recovery has been going well, back to almost full load of weightlifting training, feeling healthy and fit, stronger than before the mastectomy, taking more time for myself, possibly putting the breast cancer episode behind me. Maybe I already achieved with this blog what I wanted to do, documenting exercise that can be done post surgery.

There is no such thing as putting breast cancer behind us as many bloggers attest to when discussing survivorship. It stays with us and can recur. There is no way of knowing whether, or when, or how serious it can recur. The unpredictability is frustrating. What can we do? Good nutrition, exercise, keeping a healthy weight are all associated with reduced risk, but there is NO guarantee.  Women with healthy lifestyles get breast cancer.  Our bodies don't tell us. We cannot rely on signals from the body alone and must use our brains. For example, some exercises feel good at the time, but cause swelling later.

I got the prescription of tamoxifen filled. Side effects are mentioned on the pamphlet such as hot flushes being the most common.  While making decision after diagnosis I had searched breast cancer blogs and forums for input from other women athletes to get ideas about exercise post mastectomy, since the general recommendations are minimal. So now I wanted to do the same: looking to experiences with tamoxifen by women athletes  A sure way to freaking out! The positive frame of mind and feeling healthy - gone! Reported side effects: leg cramps, joint/bone pain, plantar fascia,  leg/foot swelling, women stopping tamoxifen because of the side effects. We are worried about how it affects our exercise and competitions.

But I understand the science: a great risk reduction in cancer recurrence. Even in studies with women older than 70. And I am in my 50's - there is time for breast cancer to recur.

What a silly thought: "putting the breast cancer episode behind me".  I will have a daily reminder taking this pill in the foreseeable future.

Cording one week later

Happily, there is a marked improvement! I don't feel the tight bands anymore.

Mondor's syndrom of superficial thrombophlebitis can be a side effect of breast surgery or can also be caused by vigorous exercise, see https//www..breastcancercare.org.uk/.
Some cases in men have occurred due to push-ups or  yoga postures.

In my case it is likely the combination of mastectomy and circuit training that included 3 rounds of 10 fast reps GHD sit-ups.

The occurrence is likely underreported, not well-studied, and treatments are unclear. Physical therapy is described here: physical therapy for axillary cord formation

I am using stretches (lunges with arms back), and manual self-massage whereby taking areas of the chest and pulling them apart (at first it makes popping noises, then less so), and a herbal supplement that is anti-inflammatory. A few light days of exercises, but still including Pilates and weightlifting, and bicycling. No sit-ups!

Update from the future: It took about 3-4 weeks to resolve.

Here is a comparison:

2 days after GHD sit ups

one week later

Cording

Cording refers to the development of palpable cords (tight bands) usually in the axillary region when it is called axillary web syndrome (AWS). Reported rates vary widely. There is little known when it occurs, or why it occurs, or how long it lasts.
Tight cords under the axilla limits range of motion, and sometimes aggressive stretches are used to improve shoulder mobility.
Not only is there little known about the origin (dilated thrombosed lymphatics, or thrombosed superficial veins, or both), risk factors are guesses, and it is unclear how to treat it.  Physical therapy (stretches), non steroidal anti-inflammatories, heat packs, lymphatic massage has been mentioned.
Some forums say there is little one can do to speed up the process.

In a literature review of 8 studies symptoms lasted between 1 week to 2 years, most resolved within 3 months. The prevalence can be high depending on the studies, there is no consensus on definition, treatment, or standardized screening.

References:

Piper M, Guajardo I, Denkler K, Sbitany H. Axillary web syndrome. Current understanding and new directions for treatment. Ann. Plastic Surg 2016; 76:S227-S231.

Moskovitz AH, Anderson BO, Yeung RS, et al. Axillary web syndrome after axillary dissection. Am J Surg. 2001;181:434–439.

O'Toole J, Miller CL, Specht M, Skolyny M, Jammallo L, Horick N, Elliott K, MNiemierko A, Taghian A. Cording following treatment for breast cancer. Breast Cancer Res Treat 2013; 140:105-111.

Even less is known about truncal cording "What is Cording?" National Lymphedema Network

This may be a case of underreporting, especially if the truncal cording does not limit daily activities or causes pain.

However I was not happy to have discovered this across my abdomen during the 5th week postop (see photo of left side during a lunge stretch).  Best guess: possibly due to overdoing the GHD sit-ups (3 sets of 10). To be continued ....

Removal of the drains

Post surgery appointment at 5 days postop

Oh joy, the drains are removed.  And an acupuncture session is scheduled. 

However I seem to have developed vertigo, with dizziness and nausea. Restorative yoga (legs up the wall) and alternate nostril breathing help. The side effects of a patch for motion sickness make me feel worse. It turns out I can tolerate pain reasonably well, but I am a wimp when it comes nausea.