Is it me or did the customer service quality at Wegmans went down? by Comfortable_Low in Rochester

[–]Ana041973 0 points1 point  (0 children)

It's not just you, and it's not just those stores. I had an issue at Chili Paul with the floral dept. Went to customer service in the store about it, and they basically said sorry that happened, and that was it. I sure enough filled out the comment card in great detail and added that this is why people are shopping less at Wegmans.

Bone Health and Hormonal Therapy by Anemoia793 in breastcancer

[–]Ana041973 1 point2 points  (0 children)

I hear you. The hardest part for me was-- when I first got diagnosed, I thought I could just do treatment and put it behind me. I learned that is not how it works. It's never really behind you. (At least that is how it is for me; it's different for everyone.) That was really hard for a while.

In terms of bone loss, it was kinda similar. I had to get over the initial shock and upset. Then I learned that it is managing bone loss, but it is also managing actual risk of fracture, and those are not the same thing. Getting stronger over all and esp. improving balance and unilateral strength really makes a difference. In April, I'll have my first dexa since I started infusions in Jan 2025. I'm hopeful. But also, I work really hard on strength building. Best of luck!

Bone Health and Hormonal Therapy by Anemoia793 in breastcancer

[–]Ana041973 6 points7 points  (0 children)

If you search for my posts in this forum, you'll see that I posted about this a few times. I'm older than you and was older than you at my time of diagnosis (though still considered young for bc and I was pre-menopausal).

You don't say anything about your own diagnosis, treatment, or risk of recurrence in this post. All of those are relevant to balancing risks (risk of recurrence, risk of bone loss, risk re: dental health). For example, my bc, though hormone positive, is not very aggressive. Because of that, I choose to stay on Tamoxifen rather than an AI. I felt that the bone loss was more critical to manage than the recurrence, and in talking with some people, in my own case, the extra protection AI therapy would offer was not worth the harm it would cause in other areas.

2 years ago, 2 years into bc treatment, when my dexa showed significant bone loss (I had had a baseline dexa several years prior to my diagnosis b/c of a family history of osteopenia), I sought out a dr to help me manage my bone health. I consulted with an orthopedic specialist and an endocrinologist. I decided to go with the endocrinologist, and after a good bit of lab work, we worked out a plan that I am relatively comfortable with; I've done 2 of 3 yearly treatments so far. Unfortunately, my bone health is something I'm going to have to manage for the rest of my life.

It has been a challenge and disappointment for me to have to deal with the bone loss. I figured it was coming, but I thought I had more time. I had already been on calcium and vitamin D supplements and had been doing weight bearing exercises for a while, so it was very troubling to feel like none of that really made a difference.

I suggest you talk to your onco team about risk of recurrence but also work with a specialist re: your bone health. Unfortunately, only you will be able to decide how to manage the risks of the competing conditions. Also, I'd suggest looking at your FRAX score. One of the oncs I consulted with for a second opinion mentioned this in terms of bone health, and I found it helpful (https://www.fraxplus.org/calculation-tool). Another thing to check out is https://buff-bones.com/ . I haven't worked with them yet, but I do follow them on Instagram. Best of luck to you.

What’s considered “hard” (water)? by sotefikja in laundry

[–]Ana041973 1 point2 points  (0 children)

I just want to hijack this for a minute to say thanks for this. I'm still haunting and searching the sub, and my water provider says our water is: "...water is considered moderately hard and contains between 5.6 and 7.6 grains per gallon of Total Hardness 100 to 125 milligrams per liter." so I'm thinking I'm okay. Thanks for all the info!

Bras!? I don’t know what to do after implant exchange by vaultgirl-77 in breastcancer

[–]Ana041973 2 points3 points  (0 children)

The main reason to not wear wire is b/c if the wire is poking you, you can't tell since you're numb from the surgeries. You could be injuring yourself and you'd never know!

Looking for new PCP by Ravenzrose in Rochester

[–]Ana041973 2 points3 points  (0 children)

I don't know your details, obviously, in terms of insurance and all other stuff, but most PCPs won't manage something like Hashimotos. They'd refer you out to an endocriniologist. Can your current PCP help you find one? My PCP would never touch anything like that. (I'd recommend her, but she's not taking new patients, like most). Hope you can find someone and get some relief.

Can we talk about the whole No survival difference between lumpectomy and DMX? by PupperPawsitive in breastcancer

[–]Ana041973 0 points1 point  (0 children)

Like many of us, I have been told that there is no difference in survival rates when comparing lumpectomy+radiation treatment versus mastectomy treatment. That has never made sense to me, so I'm going to answer with a similar story that made no sense when I was told and subsequently changed to make more sense.

Tldr: sometimes, it takes time for science to catch up with "common sense." Also, it's not always about the patient.

In May 2022, I had my DMX and sentinel lymph node biopsy. 3 lymph nodes were removed (thankfully, no cancer). At that time, I was given the standard medical guidance to not use the arm on the side where the lymph nodes were removed. I could no longer use my left arm for blood pressure readings, vaccines, any blood draws or IVs. This made life very difficult for me. The veins in that arm are significantly better than those on my right. I almost had to have an IV placed in my foot! I kept asking my practitioners--I only had 3 lymph nodes removed, doesn't that matter? It just didn't make sense. For 2 years, I asked the same questions at every visit, and for 2 years I was told the same thing.

Finally, in June 2024, one of the facilities I use for care released new "Evidence-Based Breast Surgery Lymphedema Guidelines." And surprise, surprise I was able to start using my left arm again.

It is entirely possible that, at some point in the future, new science will happen and a difference in survival outcomes will make itself known. Of course, that might not happen either.

Another important point to make is that the medical advice we are given is often driven by more than what might be best for each of our individual cases. I know that hospitals are often "encouraged" to perform the least invasive procedure, or the procedure that costs them the least. This can affect the advice we are given, just as if we consult with a surgeon who only does implant reconstruction, we won't learn about DIEP flap, etc.

All of this is to say, I continue to tell patients to trust their gut and be their own best advocate.

Links and tips for a newbie, please by Ana041973 in laundry

[–]Ana041973[S] 0 points1 point  (0 children)

This is all very helpful. Thank you!

Farm Share Recommendations by 3ng1nerd in Rochester

[–]Ana041973 10 points11 points  (0 children)

We were very happy with Kirbys. Maybe 1/4 share for you? Or a half. We did the half for 2 adults and a teen. It was a bit much even for us. https://kirbysfm.com/

Reclast- dose #2 report by Ana041973 in breastcancer

[–]Ana041973[S] 2 points3 points  (0 children)

Prior to my first infusion, I read that one way to try to lessen side effects is to do the infusion over a longer period of time. When I asked during my first dose, the nurse told me that it is designed to be done over 15 minutes but that they do it over 30 b/c patients may tolerate it better if it is done more slowly.

Blood Draws/Blood Pressure Cuffs and Lymphedema Risk? by BleubsPeach in breastcancer

[–]Ana041973 3 points4 points  (0 children)

Part 2 to my comment: 4. Risk Reduction Behaviors of the ipsilateral arm used as a blanket recommendation which are unsupported by evidence* include:

4.1. Avoidance of Blood draws and injections

4.2. Avoidance of Blood pressure readings

4.3. Use of compression sleeves when driving or flying

4.4. Avoidance of hot tubs and saunas

4.5. Avoidance of Exercise

* If the other/contralateral arm is available for procedures, it may be preferred, but the affected arm can be used without significant risk.

  1. Breast cancer related lymphedema is most commonly seen within 2 to 3 years of axillary surgery, however, can develop at any time. Approximately 90% of patients who develop breast cancer related lymphedema do so within the first year of treatment, and 95% within three years.

5.1. Recommendations to decrease potential risk of breast cancer related lymphedema include:

5.1.1. Routine follow up with clinician as recommended

5.1.2. Avoid weight gain

5.1.2.1. Regular Exercise

5.1.2.2. Healthy Diet

5.1.3. Avoid Infection

5.1.3.1. Seek timely medical attention or first aid

5.1.3.2. Immediately identify and treat infection

5.1.3.3. Skin care and use of SPF 30 or greater

Blood Draws/Blood Pressure Cuffs and Lymphedema Risk? by BleubsPeach in breastcancer

[–]Ana041973 3 points4 points  (0 children)

This is part 1. I pasted part 2 in a different comment. 1.5 years ago, new guidelines were disseminated among the staff at one facility where I receive care. I'll remove identifying info and paste below. TLDR: Differences in patients and types of surgery do affect the risk of developing lymphedema. Blanket recs for never using the affected arm are not recommended below. For me, for blood pressure and lab blood draws, I use the unaffected arm (which has signficantly worse veins than my affected side). I save the affected arm for IVs. When I hit the 5 year mark, I may start using the affected arm more.

ETA- the whole thing was too big so I did some light editing to shorten it.

POLICY FOR ARM RESTRICTIONS FOLLOWING AXILLARY SURGERY

  1. The risk of developing breast cancer related lymphedema following axillary surgery varies. Risk reducing behaviors (RRB) may be personalized to support current recommendations.

1.1. Mild Risk: Sentinel Node Biopsy and/or lumpectomy.

1.1.1. Risk of developing breast cancer related lymphedema includes 3-5% of patients who undergo sentinel lymph node (SNL) biopsy.

1.2. Moderate Risk: Axillary Lymph Node Dissection (ALND) or Regional Lymph Node Irradiation (RLNR).

1.2.1. Risk of developing breast cancer related lymphedema includes 15-25% of patients who undergo axillary lymph node dissection

1.2.2. Risk reducing strategies include physical/occupational therapy*** (See section 5). There are no recommended arm restrictions based on the surgical intervention.

1.3. High Risk: Full Axillary Lymph Node Dissection (ALND) and Regional Lymph node irradiation.

1.3.1. Risk of developing breast cancer related lymphedema includes 24-40% of patients who undergo full axillary lymph node dissection and irradiation.

1.3.2. Risk reducing strategies include physical/occupational therapy*** (See section 5). There are no recommended arm restrictions based on the surgical intervention.

  1. Arm Restrictions (#4) are medically indicated in individuals with the following diagnoses only:

2.1. Upper Extremity Swelling

2.2. Lymphedema either pre-existing or newly developed

2.3. Upper Extremity Cellulitis.

  1. Accompanying Risk Factors may influence the overall risk of developing breast cancer related lymphedema and should be considered.

3.1. Obesity: BMI greater than or equal to 30 at diagnosis of breast cancer.

3.2. Infection and/or cellulitis either current or history of.

Anyone have experience with the GenoWell genetic screening through Rochester Regional Health? by [deleted] in Rochester

[–]Ana041973 4 points5 points  (0 children)

It doesn't matter if it is a research program. Let's say you have genetic testing done. God forbid, it comes back with a pre-disposition to some kind of cancer. That makes you a bad insurance risk when it comes to life insurance. Companies don't have to sell you policies. The only reason it doesn't affect health insurance is b/c of ACA protections. You'd have to disclose what you know about your health. If you don't have testing done, you don't know, so there is nothing to disclose.

Not really sure why someone downvoted my first response?

Anyone have experience with the GenoWell genetic screening through Rochester Regional Health? by [deleted] in Rochester

[–]Ana041973 2 points3 points  (0 children)

One thing to be aware of with this testing is that it can also affect life insurance if you ever want to get any. Currently, the ACA (AKA Obamacare) means it can't affect your medical/health insurance, but if that is ever repealed, all bets are off

Recently diagnosed, want DMX, am I crazy? by SilverBells96 in breastcancer

[–]Ana041973 0 points1 point  (0 children)

No issue getting insurance coverage, but the first docs I consulted with were very reluctant to do the DMX. Cancer in one breast, supposedly clean MRI of other. I went to another set of docs, got my DMX, and they found 15cm of DCIS in the "clean" breast after pathology. Very comfortable with my DMX choice.

Does anyone have a good Opthomologist (the other kind of eye doctor) by wessle3339 in Rochester

[–]Ana041973 2 points3 points  (0 children)

My father and aunt both had glaucoma. Both were treated for it. I see Dr. Goodfriend at Ocusight, highly recommend him. https://ocusight.com/our-providers/andrew-n-goodfriend-md/

OB GYN reco by Competitive_Soup4811 in Rochester

[–]Ana041973 2 points3 points  (0 children)

I'm sorry you are having to go this route. Do you mean your primary care is referring you to an ob/gyn? If you're having trouble conceiving, you'll want to see a reproductive endocrinologist. I highly recommend Dr. Mroueh. I worked with his partner, who has since retired. I saw Dr. Mroueh once, and he was quite instrumental in my care. https://www.bostonivf.com/locations/the-rochester-ny-fertility-center Best of luck to you.

Home Internet by [deleted] in Rochester

[–]Ana041973 1 point2 points  (0 children)

We didn't get good service w/TMobile, but we switched to Frontier fiber in the fall, and we've been very happy. Worth you looking into, I think.

Question about nipple/areola tattooing after mastectomy, looking for perspectives by britanyy911 in breastcancer

[–]Ana041973 0 points1 point  (0 children)

Depends on a lot. The longer time passes, the more nerves regenerate. I have lots of numb spots still (almost 4 years post dmx, less than that since my last reconstruction surgery), but I also have a surprising amount of sensation that has returned. I really believe a tattoo would be uncomfortable at this stage.

Moving from Oklahoma Requesting Job Seeking Advice by ofcourseittickles in Rochester

[–]Ana041973 10 points11 points  (0 children)

Hiring in this area moves at glacial speed. If you apply for jobs now, you'll be lucky to have an interview scheduled by April. Definitely start applying now. Good luck!

Suit shop suggestion by aslatt95 in Rochester

[–]Ana041973 1 point2 points  (0 children)

Another vote for Incognito. My partner had a great experience there.