Breast Cancer

Join the Conversation on
Breast Cancer
58.4K people
0 stories
4.7K posts
About Breast Cancer
Explore Our Newsletters
What's New in Breast Cancer
All
Stories
Posts
Videos
Latest
Trending
Post

I'm new here!

Hi, my name is Groomer47. I've been diagnosed with metastatic breast cancer.

#MightyTogether #BreastCancer

4 reactions 2 comments
Post

My Medicare (Dis)Advantage Story

I would like to share my Medicare (Dis)Advantage story with you. It’s my hope to help others be forewarned. I learned the hard way.

At the age of 42, I was diagnosed with breast cancer. The breast cancer I beat, but the surgeries created a new set of problems. Within one year, I had three surgeries trying to undo what had been done. I had walked into the hospital as a fully functioning EMT and was wheeled out never to walk without assistance again. In the end, I lost everything, my career, my home, everything. I then was bedbound for two years.

I was diagnosed with two rare diseases, Complex Regional Pain Syndrome and Small Fiber Neuropathy. CRPS is also known as the Suicide Disease. It’s the most painful disease known to medicine. Though it was discovered over 200 years ago, to date it does not have a single solitary treatment approved by the FDA. United Healthcare Medicare DisAdvantage loves to use that against me and as a reason to refuse to cover the lifesaving treatments which I have to have.

There came a point where my health got so bad that I had no quality of life left. I talked to my primary about signing a DNR (Do Not Resuscitate order).

Then I gave it one more fight. I did a gofundme. I sold everything and bought my way into treatments. I was wheeled in and I walked out. I stopped living in a bed. For the past five years, I have fought to keep myself alive by paying premiums and copays on top of the full cost of my infusions, plus the medications they refuse to cover.

Then things got bad last year. My illness was progressing and I was forced to ration infusions because my rent went up $400. My neurologist started me on LDN (Low Dose Naltrexone). But the pharmaceutical company that makes the medication will not make it in the low doses that I need, because it isn’t profitable to them. For that reason, I have to use a compounding pharmacy to get the medication. Again, my Medicare (Dis)Advantage plan will not cover it.

Recently I had a denial happen via text message. The first message says “Thanks for submitting your request.” Nine minutes later, a denial text appeared. I was still on the phone with the service navigator who helped me file the request. She immediately said to me, “Oh, I thought that would happen; it’s the name of the medication.”

So a computer decided. A keyword gave me an instant denial and instructions to appeal it in writing within 30 days. Then the insurance gets between 30 and 60 days to make a decision on that appeal. These are the kinds of delays in healthcare that are killing people every day in this country, all in the name of profit.

I went to a Rights and Democracy meeting and found out there are people who would help me fight. It wasn’t an easy decision to make, going public, and sharing some of the worst moments in my life.

It took a public social media campaign with videos and over 4,000 signatures on a petition to get United Healthcare to talk to me. They didn’t like the embarrassment, considering my videos launched the same day that they bragged about eight billion dollars in profit for just the first quarter of this year. That’s only three months. They deny care while pocketing our premiums.

United Healthcare said that they would pay for my infusion after all that, but when the cameras went away, so did the approval department. I had to contact my senators, and I’m lucky to have two senators willing to fight for me.

It’s taken four months of fighting, a public campaign with videos being viewed tens of thousands of times, over 4,000 signatures on a petition, and two United States Senators, but now they say they are really going to pay for the infusion. I’ll have to get back to you on if they really do or not.

I share just a bit of what I have gone through. I have spent so many hours on the phone just arguing for the medical care that I need to survive, with people who have not even a small working knowledge of the medical care I am begging for. It shouldn’t be this way in America. We should be the very best. Please vote, act, and help to get private for-profit health insurance companies out of Medicare.

Do you know who is representing you? If you visit congress.gov/members/find-your-member you can find them, contact them, and join me in fighting for healthcare for all.

1 reaction
Post

Hyperparathyroidism and Cancer: Investigating Possible Connections

Hyperparathyroidism (HPT) is a medical condition in which the parathyroid glands produce excessive amounts of parathyroid hormone (PTH) in the blood. HPT has many difficult symptoms, including muscle weakness, bone and joint pain, concentration and memory issues, abdominal pain, and frequent urination. Some patients with HPT may also feel a lump in the neck.

HPT is treatable, especially if caught early, but leaving it untreated can lead to life-threatening complications such as osteoporosis and kidney disease. Not only that, but HPT is also linked to several types of cancers. In this article, we’ll explore the connection between hyperparathyroidism and cancer.

What is Hyperparathyroidism?

PTH maintains steady levels of calcium in the blood. HPT occurs when one or more of the parathyroid glands become enlarged and produce large amounts of parathyroid hormone. A high level of PTH leads to high calcium levels in the blood, impacting various body systems including the bones and muscles, brain, gastrointestinal system, and kidneys.

Hyperparathyroidism in Cancer Patients

A growing body of scientific evidence tells us that HPT is associated with numerous cancer types, including parathyroid cancer and thyroid cancer as well as skin, breast, colon, rectal, and kidney cancers. Studies also show that HPT increases the risk of malignant cancers. A study based on data from the Danish cancer care registry showed that patients with HPT have 25% increased risk of cancers.

Hyperparathyroidism and Parathyroid Cancers

Around 0.5% to 5% of HPT is caused by parathyroid cancer—that is, by a malignant tumor in the parathyroid. As of now, we know that certain factors, such as radiation therapy in the head, neck or breast region, and genetic disorders like hyperparathyroidism-jaw tumor syndrome, multiple endocrine neoplasia type I (MEN1) and familial isolated hyperparathyroidism (FIHP), increase the risk of parathyroid cancer.

High calcium levels in blood is one of the chief indicators of HPT, and thus the risk of parathyroid cancer. If your blood reports show high serum calcium levels or if you experience any of the symptoms discussed above, you should get a consult from a board-certified parathyroid specialist.

Parathyroid cancers are aggressive cancers and should be caught and treated early. For this condition, the only treatment is the complete removal of the affected parathyroid gland. If the tumor isn’t removed completely, recurrence of the cancer is extremely likely.

Hyperparathyroidism and Thyroid Cancer

A study published in BMC Surgery showed that the incidence of papillary thyroid cancer is high in patients with primary and secondary HPT. Papillary thyroid cancer is the most common type of thyroid cancer, which usually forms on one lobe of the thyroid gland. The study also found that thyroid tumors more than 1 cm in size were seen only in patients with primary hyperparathyroidism.

Thyroid cancer spreads very fast and can affect the lungs, bones and other body parts. Its symptoms include persistent cough, hoarseness of voice, neck pain which radiates to the ear, swelling in the neck, and difficulty breathing and swallowing. If you experience any of these symptoms alongside the symptoms of HPT described above, it is likely your HPT may have led to thyroid cancer. Consult a thyroid specialist immediately.

Hyperparathyroidism and Breast Cancer

Breast cancer is among the leading cancers in women in the US. Around 30-40% of women with malignant breast cancers do show high calcium levels in blood at some point during their illness. In these cases, high calcium levels in blood usually indicate spread of cancer to the bones, but it may also be caused by primary hyperparathyroidism. Moreover, women with primary hyperparathyroidism are more likely to have breast cancer than women who don’t. In women with breast cancer and high serum calcium levels, parathyroid hormone levels are usually checked to find out if the underlying cause of high calcium levels is HPT.

The Hyperparathyroidism and Cancer Connection—Possible Theories

So, we know that HPT and cancers are associated, but how do we explain the link between them? There are several theories that have been proposed so far.

Some research shows that high calcium levels in blood triggers cell division. Cancer cells, by nature, do not stop multiplying or die off, so runaway cell division caused by high blood calcium levels could conceivably lead to cancerous growth.

A few studies have also pointed out that high parathyroid hormone levels promote tumor development and inhibit cell death. Some other studies say that low levels of vitamin D, which is a prominent feature of HPT, may also increase cancer risk.

The evidence shared by these studies, however, is unfortunately not yet definitive. Scientists are still trying to find out the exact mechanisms that explain why cancer and HPT coexist, so for the moment these theories are not yet proven.

When to See a Doctor about HPT

As noted above, untreated HPT may lead to serious health issues. Many studies have shown that in addition to cancer, HPT is also linked with life threatening heart and kidney disease. Hence, it is important to be watchful for hyperparathyroidism symptoms and signs, and if you have HPT, get it treated early to prevent complications.

If you experience symptoms of HPT and your blood reports show alterations in P and calcium levels, you should get an appointment with a parathyroid expert. Dr. Babak Larian of the CENTER for Advanced Parathyroid Surgery is a parathyroid expert in treating HPT safely and effectively. He performs a minimally invasive parathyroidectomy (MIP) with a high success rate and minimal scarring. An MIP can usually be completed in under 20 minutes and is followed by a four-gland assessment that ensures patients can maximize their surgery results.

References:

1. HyperparathyroidMD. Is there a connection between hyperparathyroidism and cancer. Available at:

2. Pickard AL, Gridley G, Mellemkjae L, Johansen C, Kofoed-Enevoldsen A, Cantor KP, Brinton LA. Hyperparathyroidism and subsequent cancer risk in Denmark. Cancer. 2002 Oct 15;95(8):1611-7. doi: 10.0.3.234/cncr.10846. PMID: 12365007.

3. Serena Palmieri, Letizia Roggero, Elisa Cairoli, Valentina Morelli, Alfredo Scillitani, Iacopo Chiodini, Cristina Eller-Vainicher . Occurrence of malignant neoplasia in patients with primary hyperparathyroidism. European Journal of Internal Medicine. Volume 43, September 2017, Pages 77-82

4. Michels KB, Xue F, Brandt L, Ekbom A. Hyperparathyroidism and subsequent incidence of breast cancer. Int J Cancer. 2004 Jun 20;110(3):449-51. doi: 10.0.3.234/ijc.20155. PMID: 15095313.

5. Rodrigo Arrangoiz, et al. Is Breast Cancer Associated with Primary Hyperparathyroidism?. American Journal of Otolaryngology and Head and Neck Surgery.2019. Volume 2(1). Article 1033

6. Goswami S, Ghosh S. Hyperparathyroidism: cancer and mortality. Indian J Endocrinol Metab. 2012 Dec;16(Suppl 2):S217-20. doi: 10.0.16.7/2230-8210.104042. PMID: 23565381; PMCID: PMC3603029.

7. Karaköse M, Kocabaş M, Can M, Çalışkan Burgucu H, Çordan İ, Kulaksızoğlu M, Karakurt F. Increased incidence of malignancy in patients with primary hyperparathyroidism. Turk J Med Sci. 2021 Aug 30;51(4):2023-2028. doi: 10.0.15.66/sag-2012-18. PMID: 33957725; PMCID: PMC8569777.

2 reactions 2 comments
Post

I’m new here!

Hi, my name is shulamitegirl.

#MightyTogether I am just being diagnosed with ILC Breast Cancer

1 reaction 1 comment
Post

I'm new here!

Hi, my name is pinkpain64. I'm here because
I had a bilateral mastectomy and I’m wondering if it was the right decision. I’m now flat it feels very different. I have muscle spasms all the time on my left side very uncomfortable. I have trouble sleeping at night. I’m praying it gets better. The muscle relaxer only puts me to sleep. I’m looking for a massage therapist. My skin is hard due to a previous breast cancer with radiation. This sucks. I’m Trying to feel better. Don’t wish this on no one. I wasn’t well informed about the side I had radiation on.#MightyTogether #Depression #Anxiety

3 reactions 2 comments
Post

I'm new here!

Hi, my name is Lotta19. I'm here because I have struggled for many years with a daughter with some mental illness and alcohol. My story is somewhat long. I had a sister who was diagnosed with breast cancer at age 27 and died at 28. She was a single mother and had a daughter, which she asked my husband and me if she didn’t survive would we raise her. Well, no second thought to that, absolutely!! After sharing time with visits with her biological father until she was 6 we adopted her. To move forward with my story her father was also killed in a motorcycle accident. We loved this child from day one. I worked in the medical field and knew some of the child psychologist and made sure we worked with someone to help with the transition and all that she had gone through. Now she was a very bright child and at a young age figured out how to manipulate people. As she got older she got even better at it. Problem was I didn’t recognize it. We did all kinds of things to involve her in activities. Dance, church, plays, travel, sports moving to 1st apartment and to WI for nursing school. Where her then boyfriend became husband and had two beautiful daughters. And I also neglected to say that when she came into our lives we had our first born son that was only 10 months old! So, a 17 and 10 month old. Ok, so not sure when things started to go wrong with the marriage. The drinking was more a problem with the husband than he stopped and she seemed to do a lot more. Then the DUI’s came! And lots of lying and fighting and so much more. I probably had so much verbal abuse from a daughter that was so bad that at times it was all my husband could do to hold back. Then came the new thing that she was diagnosed with personality disorder, which I questioned maybe bipolar disorder. She could be so mean and then be mommy I love you and all these things to draw me back in. And when she would get mad she would use the threat of never letting me see my granddaughters. UPS and downs for the 10 years with the mental issues, drinking and 4 DUI’s and arrests. Felony charges luckily not having to go to prison, house arrest for a two month sentence. 10 year drivers license suspended. Oh she went through treatment 2X and 1 1/2 years of sober living and worked her way back to getting custody back for her daughters. She is now about 2.0.0.5 years sober so there’s that Problem is how hard it has been dealing with all of this. I have been going to Al-Anon for almost 5 years and it has helped a lot. It’s the mental illness part. I know that she is a master manipulator and every time there is something that she gets crazy about she tells me not to contact her and that if we want see the girls we have to meet somewhere for now that’s best. You can’t reason with that. I just back down and say got it. Cause it’s not worth it. Sad thing is it doesn’t effect her, like make her feel bad for her girls, all about her. How do I have a relationship with our granddaughters.

3 reactions
Post

I'm new here!

Hi, my name is Oct1. I'm here because I worry about reoccurring breast cancer

#MightyTogether #Depression

3 reactions
Post
See full photo

Straw That Broke the Camel’s Back #Migraine #BipolarDisorder #SituationalDepression

Coming into the summer season is basically coming into migraine season. I’m working with my neurologist to find the right dosage of my preventative medication but unfortunately we can only really do one or maybe two small increments over the worst of my migraine episodes!!! Because over the summer there are extreme weather conditions that I have not control over!! So, I basically relegate myself to my bedroom with the blackout curtains closed, a/c on and let my brain play tuning fork for the storm and humidity levels in the area!
On top of that, I live with bipolar disorder in which I have a bit of extra sensitivity when dealing with triptans, and my own various meds I take for bipolar. So under very close observation and monitoring with my psych team, we actually lower those meds to give more room to allow for more relief for migraine symptoms. Because right now well let’s face it that’s the worst thing right now. It’s just kind of like wtf that I have to put my mental health at risk in order to help treat another condition!!! And the thing is that I’m fading into depression. I’m not doing very well at all right now. If I could say that living with bipolar disorder and migraine were my only problems, then maybe the camel would still be walking around fine. But it’s not. I have several other concerns: hypothyroidism, endometriosis, Interstitial Cystitis, Myofacial Pain Syndrome, and a chronic pain issue that affects my joints and connective tissues that I believe is EDS. So. I live in constant pain. Every single day.
So yeah. I’m depressed. I just don’t want to do this anymore. I got no fight left.
And yet, I’m not going to increase my antidepressant. Because I know that this is situational depression. I have reasons to be depressed. It’s not just about my stuff that has me feeling depressed. My mom has breast cancer (the prognosis is like 99% survival) but I upset with myself for not being there with her right now because she is scared. And just other stuff in life going on. When it’s situational depression, I usually come out of it ok.
If it were a bipolar depression, then it might be a different story. Bipolar depression of not caught early on and left to it’s own devices usually ends up in a very dark place of suicidal ideation and a possible hospitalization. Luckily in the past 25 years of living with bipolar disorder I have learned that difference.
So, I guess that I just continue with the way things are and hope that my next medication dosage increase in the fall and the changing of the seasons that will help with the migraine to be one less straw on my poor camel’s back.

5 reactions 2 comments