Monthly Archives: June 2016

New York City Garden 2016

It’s been a long year or so without our balcony herb garden. Mandatory brickwork outside our apartment started in April 2015 with a Cristo-like gauze wrapping around the entire facade and taping shut our windows and balcony door. We lived like that for almost an entire year, until finally, in April, we were allowed access to the balcony again.

That’s the bad part.

The good part is that I got to start the balcony garden all over again. The building had removed our handmade deck floor, so I replaced it with a wonderful and inexpensive Ikea deck floor.

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I also swapped out our rusting bistro set and rickety plant stand for a bistro table and Sophia Chairs (ridiculously cheap on Craigs list) and a couple of Ikea plant stands.

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The window boxes and all the pots survived on the roof during the construction, although we lost all the herbs save the hardy chives that have come back every spring for almost 20 years. I planted the window boxes with a brown grass, coleus, Thai basil and asparagus fern that I found at my new favorite garden store – GardenWorks in Flushing.

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After some searching around for them, I found some straggling hyacinth beans for a song at Chelsea Gardens in Red Hook. They had wilted in the heat and looked terrible, but the salesclerk promised me they’d be fine and she was right. They are rapidly lining the trellis and railing, keeping the eyes off the ugly white storage building across the street and focused instead on the garden and the skyline view.

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Still left to do is hang a half moon lined planter or two from the brick wall (if the building will let me), and fill them with some colorful annuals. And get an umbrella. And maybe some pretty pillows for the chairs. And some little bistro lights for evening.

Drinks, anyone?…

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NYC Gardening Resources

I would have killed for this list in my early days of gardening here in NYC. Sadly, many of the favorite places I used to frequent (like Dimitri’s and Liberty) are no longer in existence, but these are tried and true. I avoid the small, precious gardening stores, and tend to larger garden centers, which are cheaper. If you have a car, your options increase widely. 

Union Square Farmers Market. The place to go for organic lettuces and herb plants. I’ve got some gorgeous lettuce mixes over the years that have graced my salads well into summer. Also good for annuals.

Plant Shed. On 96th St near Broadway on the Upper West Side. They’ve been there for years, and a consistently reliable source for spring herbs and annuals. Perennials and shrubs more limited. Prices are not outrageous for NYC. They deliver.

Chelsea Gardens: Not cheap, but if you need something, they’ll have it (like the hyacinth beans I was looking for this year.) Staff is extremely knowledgable.  Great place to go to see what is possible in the city. Started in Chelsea, now also in Williamsburg and Red Hook.

Gowanus Nursery. The place to go for something special, and like Chelsea Gardens, see what is possible. If you’re visiting Red Hook, combine it with a trip to Chelsea Gardens.

Kings County Nursery: Very reasonably priced Garden Center deeper into Brooklyn. I like this place. A lot. Good source for trees, vines, grasses, shrubs, as well as garden supplies and annuals.

Garden World in Flushing. My new favorite place. Wonderful selection of healthy, gorgeous plants and trees.

Home Depot. The one on Northern Blvd in Long Island City. Where I go for potting soil, stones, and basic shribs and annuals. (The Home Depot in Manhattan does not have the really large bags of soil or stones.) Occasionally they surprise you with an unusual shrub or annual. Sales can be great. I picked up two crabapple trees for 10 bucks apiece there a few years back – both are thriving. The Spirea I got there for next to nothing have also lasted years.

Jamali Garden – in the flower district. Basic supplies, containers, plant food, lighting, you name it. Like a giant hardware store for your garden. Reasonable prices.

Hicks Nurseries – If you’re up for the schlep out to Long Island, Hicks is well worth the trip. They have everything. Not as cheap as you’d think. But great selection and quality.

IKEA – for containers and fun garden accessories such as funky solar lights, prices can’t be beat. I go to the one in Brooklyn.

For trees. Any of the garden centers in the city and near Long Island are way too expensive for my budget when it comes to buying trees. For these buys, I head out to New Jersey, where garden centers abound. Prices will be much more reasonable, but be careful. The help do not know urban gardening and could recommend the wrong species for your roof or balcony conditions. If they deliver, it may be pricey. So consider renting a truck and delivering to yourself.

What Women Want – How and When to Deliver the News of a Breast Cancer Diagnosis

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If you’re going to have to tell a woman that she has breast cancer, she wants to hear the news as quickly as possible, preferably face to face, ideally within 1-2 days of the biopsy being done, and have an appointment set up to deal with the diagnosis either that day or the next.

That’s what Dr Deanna Attai and colleagues found out when they surveyed over 1000 women, including 784 breast cancer survivors, to find out how and how soon they wanted to get their breast biopsy results, and compared that to what actually happened when they got their results.

It’s no surprise that in almost all cases, when it comes to hearing results, what women got did not match what they wanted. For example, while 40% of women heard their diagnosis within 1-2 days of biopsy, 80% would have wanted their results within that time frame.  Fifty four percent heard their mammogram results within 2 days, but 84% wanted them the same or next day.

A few important nuances emerged from the data – given a choice between hearing results face-to-face and getting them faster over the phone, women opt for speed. If it’s a mammogram or blood test result rather than a biopsy, face-to-face is not as important.

Most interesting were the comments women made on their surveys, which should be required reading for anyone having to give bad news. Here are just a few –

  • “Use the same compassion and candor you would use if you had to give this info to your loved one”
  • “Nothing is worse than calling a patient and telling them to bring someone with them but not telling them why.”
  • “Please remember that a bad test result may throw a person off, so much so that they cannot really hear what you are saying. Be clear and be careful. Ask the person to reflect back what you have said, so you are sure they got it!”
  • “We were starving for reliable information when I was diagnosed. Wish there was information provided with the results that further explained everything.”
  • “Always present situation with hope.”
  • “My oncologist was exceptionally kind. He said ‘I’m sorry this is happening to you’. He was the only one of several doctors to do so’”

The study population by design sampled internet-saavy women, and Caucasian women were over-represented in the sample, so these results may not extrapolate to all women.

But the message is loud and clear – when it comes to breast cancer screening results, we are not meeting our patient’s desire for timeliness or preferred method of communication.

Rethinking Gonad Removal in Individuals w/ Complete Androgen Insensitivity Syndrome

Lauren in MTV's "Faking it" has AIS
Lauren in MTV’s “Faking it” has AIS
What if you were genetically male, but your body was blind to testosterone ?

I’ve just described XY Complete Androgen Insensitivity Syndrome, or CAIS, a genetic condition in which there is a defect in the androgen (testosterone) receptor gene – located, ironically, on the X-chromosome.*

Describing CAIS

XY (genetically male) individuals with CAIS have gonads (testes) that manufacture testosterone, but their body’s cells cannot see the testosterone. As a result, their internal and external genitalia develop as female, but the vagina is shortened and smaller than normal. The testes are either located in the groin or in the abdomen.

At puberty, individuals with AIS develop breasts due to the body’s conversion of testosterone to estrogen. Pubic and underarm hair is scant, since this hair growth requires androgen receptors. With dilation of the vagina, AIS individuals can have sexual intercourse, but they cannot bear children.

As to gender identity, although CAIS individuals are viewed as female and until now, treated that way, it may not be as simple as that. (Huge “Duh” from the AIS community on this one, I’m sure…) Some interesting brain imaging studies do suggest the brain sexual response in CAIS aligns to female, not male. But gender identity is too individual an issue to address here. It could be linked to specific gene defects, and I suspect will be teased out over time as the medical community wakes up to the psycho-sexual needs of this community.

One way in which we are already waking up is in how we are managing the risks of cancer of the gonads in individuals with CAIS.

Cancer Risks in the Gonads of XY individuals with CAIS

Until recently, based mostly on case reports and anecdotal evidence, it had been accepted that there was an increased risk of cancer in the testes of individuals with AIS – a risk as high as 22% in one early published series. Therefore, for many years, one of the tenets of caring for individuals with AIS has been removal of the gonads in childhood, followed by the induction of puberty with estrogen and lifelong estrogen replacement therapy.

All of this has changed over the past few decades. A growing scientific literature finds that the actual incidence of gonadal cancers in CAIS is as low as 5 to 10%, with few to no malignancies prior to puberty. This led to the current standard of care for AIS, which is to delay gonad removal till after puberty is complete – usually between ages 16-18. This allows for a smooth, natural pubertal transition (nature always does it better than pharma), and for the more mature patient to be involved in management decisions going forward.

Rethinking Gonad Removal for Cancer Prevention

Now, the needle is shifting even further, as genetic sequencing allows us to stratify cancer risks in individuals with AIS according to their genetic defect. For those with complete androgen insensitivity, at lowest risk of cancer, the chance of retaining the gonads indefinitely is now being considered, along with various surveillance regimens to help catch cancer if and when it develops in the retained gonads.  Proposed surveillance options include gonad biopsy, ultrasound and serum tumor markers in individuals whose testes can be easily seen on sonogram. For those whose gonads are hard to image, laparoscopic surgery called gonadopexy can move the testes closer to the abdominal wall to allow for biopsy and sonographic surveillance.

(Note that this option of surveillance is only appropriate for those with CAIS. Individuals with Partial Androgen Insensitivity Syndrome or PAIS have a cancer risk as high as 50%. For these individuals, standard of care is to remove the testes, usually before puberty.)

We don’t know yet just what, if any, advantage there is in retaining the gonads past puberty in CAIS, other than the obvious one of avoiding surgery and hormone replacement therapy. Proposed gonadal surveillance strategies have not yet been tested prospectively, and ideally would be done in an IRB-approved clinical trial, which may not be randomized for ethical reasons, but could certainly be matched to individuals choosing to have their gonads removed at puberty.

Paramount to moving forward on any path towards surveillance, research or otherwise, is a well-informed patient. The good news on that front is that there is a lot of information out there now for patients and their families to help them learn about and participate in management decisions around CAIS. And as we move forward, let’s never forget – Prima non nocere.

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SUGGESTED READING

Patel V, Kastl Casey R, Gomez-Lobo, V. Timing of Gonadectomy in Patients with Complete Androgen Insensitivity Syndrome – Current Recommendations and Future Directions, J Pediatr Adol Gynecology 29 (2016) 320-325. This blog post was written in response to this well-written state of the art mini-review and its accompanying editorial by Joseph Sanfilippo, MD.

RESOURCES FOR AIS INDIVIDUALS AND THOSE WHO LOVE THEM

*Note – there are XX individuals with CAIS who carry a gene defect of the androgen receptor on both X chromosomes. These individuals are genetically female and develop as a female, but are minimally affected, though they may be tall, have scant pubic and underarm hair and delayed puberty. This blog post is not about them.