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Posts (40)

Thu, Mar 5 10:57am · Bilateral mastectomy and DIEP flap reconstruction experiences in Breast Cancer

I do like your humorous "improving grades" outlook, which no doubt helps your overall outlook, Trixie!

Sat, Feb 29 8:36pm · Anastrozole and bladder pain in Breast Cancer

"even though my PCP shames me for using it." The shame is on your PCP. Johns Hopkins and Mayo both recommend vaginal estrogen for breast cancer patients dealing with urogenital issues. Your PCP is uninformed and if "shaming" is a tactic, then s/he is also uncompassionate. Best wishes to you. I do know what you are going through and it is important to find relief to be able to get through each day.

Tue, Feb 11 9:04pm · Nocturnal Leg Cramps - Help! in Bones, Joints & Muscles

Of course. There's the photo/files right there in front of me. When I pull on the end of the string, my toes flex, stretching my calf.

Thu, Jan 30 9:19pm · LCIS-Age 61 (post menopause) diagnosis- AI’s a good idea? in Breast Cancer

" Any ideas, advice,ANYTHING before my head spins off????? "

NYCoceans, your timeline is almost exactly my timeline for LCIS. Give those AIs a try is my suggestion. If they are not tolerable then quit and at least you know you gave them a shot. I tried the AIs and could not tolerate them for more than a few weeks. Same with Tamoxifen, even the low dose. But Evista/Raloxifene is fine. I mention my failures with the various drugs to emphasize trying them all. Even if some are terrible for you, it does not mean they all will be terrible for you. Everyone reacts differently to the different meds and you may even feel fine with all of them.

Another idea would be to get an MRI every year. I do that at Mayo and talk to the oncologist there once a year. I've done that for 2 years and plan to continue. My other annual tomo 3-D mammogram I get at home. If you are not getting the tomo, then that would be one piece of advice.

Also check with Mayo about clinical trials you might be eligible to participate in, if that is of interest to you.

If not Mayo, you may want to seek a second opinion on your diagnosis elsewhere and just hear what the other professional has to say. I have been very impressed with the Nurse Practicioners I have encountered, especially at high risk breast clinics.

My head was spinning off about the first year after the diagnosis and because atypia was found months later in the other breast. I'm in the vigilant but not paranoid state now and hopefully you will be too.

Good luck to you.

Mon, Jan 6 6:20pm · Concerned about the side effects of anastrozole in Breast Cancer

This study, just presented at the San Antonia Breast Cancer Symposium, Dec of 2019 might be of interest.


Anastrozole significantly reduced breast cancer after even 10.9 years after stopping the drug–a 50% reduction vs a placebo. Now on to deaths from breast cancer. At the time of analysis, 129 deaths had been reported, with no significant difference in all-cause mortality between the anastrozole and placebo groups. There had been only five deaths from breast cancer, two among those assigned anastrozole and three among those assigned placebo. “This is too few breast cancer deaths to determine if anastrozole reduces breast cancer mortality, so we are planning to follow the IBIS-II Prevention participants for longer to investigate this,” Cuzick concluded.


SABCS 2019: Breast cancer preventive effects of anastrozole persist long after stopping treatment
12 Dec 2019

Breast cancer incidence among post menopausal women at high risk for developing the disease continued to be significantly reduced 5.9 years after stopping five years of the aromatase inhibitor anastrozole, according to data from the International Breast Cancer Intervention Study II (IBIS-II) Prevention trial presented at the 2019 San Antonio Breast Cancer Symposium, held Dec.10–14.

The study is being simultaneously published in the The Lancet.

“IBIS-II Prevention was designed to investigate whether fiveyears of anastrozole can safely and effectively prevent breast cancer in postmenopausal women who are at high risk for the disease,” said Jack Cuzick, PhD, cochairman of the International Breast Cancer Intervention Studies. “In 2013, we reported that in the first seven years of follow-up, anastrozole significantly reduced breast cancer incidence compared with placebo and that it did so with very few side effects."

“Our new data show that after a median of 10.9 years of follow-up there continues to be a significant reduction in breast cancer incidence,” continued Cuzick, who is also director of the Wolfson Institute of Preventive Medicine, head of the Centre for Cancer Prevention, and the John Snow Professor of Epidemiology at Queen Mary University of London.

“It is exciting to see that anastrozole has a continued impact on breast cancer incidence even after stopping treatment, as this strengthens the case for its use as a breast cancer prevention therapy.”

Cuzick and colleagues enrolled 3,864 postmenopausal women at increased risk for developing breast cancer in the IBIS-II Prevention study from 2003 to 2012.

Women were considered to be at high risk for breast cancer if they fulfilled any one of a number of criteria, including having two or more blood relatives with breast cancer, having a mother or sister who developed breast cancer before the age of 50, and having a mother or sister who had breast cancer in both breasts.

Among the participants, 1,920 were randomly assigned to anastrozole for five years and 1,944 to placebo.

Five-year adherence to treatment was 74.6 percent for anastrozole and 77.0 percent for placebo, which is not significantly different.

After a median follow-up of 10.9 years, the researchers found that women assigned to anastrozole were 50 percent less likely to have developed breast cancer compared with women assigned to the placebo.

Cuzick explained that there were no new adverse side effects to add to those reported in 2013, which were mostly small increases in muscle aches and pains, and hot flashes.

“No excess of fractures or other serious side effects were seen with anastrozole,” he said.“The 50 percent reduction in likelihood of breast cancer incidence after 10.9 years of follow-up is slightly less than the 53 percent reduction we reported after the first seven years of follow-up, but it is still a significant effect and larger than that seen for tamoxifen,” said Cuzick.

“Another way to consider the data is that it translates into an estimated 29 women needing to be treated with anastrozole for five years to prevent one breast cancer during treatment and in the next five years.

“This is far fewer women than the estimated 49 women that need to be treated with tamoxifen for five years to prevent one breast cancer in the same time period,”added Cuzick.

“Therefore, our new results strongly suggest that anastrozole should be the preferred therapy for breast cancer prevention in postmenopausal women at increased risk for the disease, with tamoxifen used for women who experience severe side effects from anastrozole.”

Cuzick cautioned that the preventive benefits of anastrozole are seen for oestrogen receptor–positive breast cancer and for ductal carcinoma in situ but not for pestrogen receptor–negative breast cancer.

This is to be expected, he says, because anastrozole targets the oestrogen pathway.

At the time of analysis, 129 deaths had been reported, with no significant difference in all-cause mortality between the anastrozole and placebo groups.

There had been only five deaths from breast cancer, two among those assigned anastrozole and three among those assigned placebo.

“This is too few breast cancer deaths to determine if anastrozole reduces breast cancer mortality, so we are planning to follow the IBIS-II Prevention participants for longer to investigate this,” Cuzick concluded.

The link:


Dec 29, 2019 · Nocturnal Leg Cramps - Help! in Bones, Joints & Muscles

I sent you a PM @dixiedog on how to contact me for a pic of the sock. I do not believe I am able to post a picture here, or I'd just do that.

Dec 26, 2019 · Concern over Gadiolinum dye in MRIs in Breast Cancer

At my last MRI at Mayo, I received a "Medication Guide." Included in the info is: "There are different Gadolinium-based contrast agents that can be used for your MRI exam. The amount of gadolinium that stays in the body is different for different gadolinium medicines. Gadolinium stays in the body more after Ominiscan or Optimark than after Eovist, Magnevist, or MultiHance. Godolinium stays in the body least after Dotarem, Gadavist, or ProHance."

I asked what I was given for my breast MRI and was told Gadavist.

The "Medication Guide" also stated, "Small amounts of gadolinium can stay in your body including the brain, bones, skin and other parts of your body for a long time (several months to years). It is not known how gadolinium may affect you, but so far, studies have not found harmful effects in patients with normal kidneys. People who get many doses of gadolinium medicines…may be at increased risk from gadolinium staying in the body."

My next question when I return to Mayo for another MRI will be to define "many doses." Is once a year for a lifetime considered "many"?

Dec 24, 2019 · Nocturnal Leg Cramps - Help! in Bones, Joints & Muscles

In addition to stretching, hydration, Potassium, and Magnesium, and setting an alarm to get up in the night for more stretching, this "creation" has helped me in reducing both the severity and the frequency of night time leg cramps that always occur for me in my calf down to my ankle or foot. Never above the knee.

I got a regular sock of mine and a piece of fleece (could be any fabric) 3 inches wide and 64 inches long (I'm 5' 5"). I wrapped the end of the fleece around where the ball of my foot is on sock 2x and sewed it on. Not so tight as to restrict my foot movement within the sock. Did not want to make the tube of the sock tighter.

That left nearly 5 feet of "tail." I made sure I aligned the tail so it streamed off the bottom of the sock, then came over my toes on the top of the the middle of the sock. I sewed all that on the sock to anchor it. Again, I did not want to make it too tight. The sewing on the top of the sock stops about half way between my toes and ankle, leaving the tail free.

When I have the start of a cramp in the night, I pull the tail toward me so my toes are pulled toward me. This flexing of my toes, stretching my calf helps alleviate the cramp.

So that the tail is always within reach of my hand, I run it up my leg and through my underpants and out the top of my pj bottoms. The top of the tail then hangs near my hand, within easy reach. Since I get cramps only on one side from past injuries, I only have one of these "creations" but you could have two.

Since I made this in June, just wearing it has somehow reduced my night cramps to 2 times in 6 months instead of once every 10 nights. I don't know how it could be preventive other than something psychological or that my right foot feels a little different inside this "creation" and that sensation has some effect on the nerves. Who knows? But the 2 times I've gotten cramps in the night, I just pulled on the tail, which flexed my foot and the cramp did not last long. In the past the cramps could come in waves for 20-30 minutes. Sometimes I'd be screaming. Also, the two times after pulling on the tail, I was not hobbled for the next several days after the cramp, which used to happen a lot, probably because the cramps used to become much more severe without the quick intervention.

RE: Theraworx–I tried it for about 2 weeks and got cramps. Maybe it takes longer?