How do I know: I was diagnosed with... - SHARE Metastatic ...

SHARE Metastatic Breast Cancer
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How do I know

DeniNewell
DeniNewell

I was diagnosed with stage IIIb lobular carcinoma in April of 2011. I had health insurance under the expanded Medicaid (thanks to the ACA) after 7 years of no coverage thanks to my pre-existing condition (thyroid cancer in 1999). I went through a lumpectomy followed by mastectomy, 6 months of chemo, 6 weeks of radiation and 5 years of Letrozole. It’s a 200-mile round trip for treatment.

In 2017 I lost my Medicaid coverage. I now have insurance through my work, but my deductible is $5,000 and $500 a month in premiums. Until you reach that $5,000 deductible they don’t pay for anything. I can’t afford the tests to see if my cancer has spread. I haven’t been to the oncologist in 2 years.

What symptoms did you have that made you think you might have MBC? I am 62, otherwise healthy and exercise regularly. I have more aches and pains than I’m used to, especially my lower and middle back.

Thanks,

Denise

14 Replies
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I had regular mammograms and they were all normal. My first symptoms were back and neck pain which I thought were from coughing due to a bad flu. I was wrong. It was metastatic breast cancer in my bonesm

Hi

If I was really worried about myself I would probably get a bank loan and get checked out..can’t put a price on your health imo

Barb xx

I had knee, back and hip pain which I initially put down to an old injury and arthritis . The back pain was a fractured vertebrae caused by the mets. The hip pain was mets and the knees were referred pain from the back. Afraid the only real way to know is through a scan, so sorry I can’t be more reassuring.

I had a cough that wouldn't go away. I'm talking months!

bloodwork?

IDK, if you can't afford treatment would knowing one way or the other really be of benefit?

I had NO symptoms when it came to my original diagnosis or recurrence.

Hi Denise,

I would say that you need to know one way or the other if the breast cancer has metastasised, otherwise waiting and doing nothing may cause more harm than good in the long run. If the cancer has spread, then the sooner you start treatment the better. I would speak to your GP and ask for a referral so that you can have a CT scan to check and see what is going on. The bone pain you described may indicate bone metastasis, but it may not. It could just be general wear and tear and age related (I mean no disrespect).

I understand that it is a lot of money to have the tests done, but either way it will be worth it. You will either a) find out that there is nothing wrong and feel reassured or b) learn that you need to start treatment to help stabilise your condition and move ahead towards better health. My sister-in-law was diagnosed with colon cancer last year shortly after me and money was tight for her and her husband. But she mentioned that she was able to pay for the medical bills in instalments and they found ways to save on expenses. For example, rather than going to the hospital to receive test results, which she said incurred a fee, she was able to receive results over the phone free of charge. Failing that, I would look into taking out a loan or perhaps asking family for help if you feel able to do that.

Take care and I hope that you are able to get some answers soon,

Sophie x

Hi Deni!

Blood tumor markers aren’t 100% accurate all the time but they are a good start. And probably around $150...I wish u lived near me I have a great doctor at a clinic that I went to as a kid but I still go to...they are saints for helping people with no insurance...definitely start there and then worry about scans if they are needed...😀

Denise, I am taking Letrozole for mets to my lungs,f or breast cancer first diagnosed in 2013. Since 2013 til

I got symptoms from the lung-(this past Jan 2019)--all I did was forget cancer (initially had just surgery and radiation--

but no medication.

The only expense of treatment for my new diagnosis as stage IV MBC has b een $11 at Walmart pharmacy for 3 months

of Letrozole. (If I were you

I would get a prescription renewal for Letrozole and take it until I can afford blood test ($the $150 test mentioned

below). Indeed, you sound like you would qualify for a Pfizer freebee of Ibrance. So you could get. prescription

for that, also, perhaps, to accompany the renewal of your Letrozole... There seems no other treatment for MBC,

and they recommend taking estrogen suppressing medicines for Life, so who needs expensive tests? Just my

opinion. Mary. in Maine

I would get checked out- you can pay off a bill but if caught early chances are better. I had no symptoms other than fatigue but I attributed that to working as a nurse in pediatrics. It was caught on routine tumor marker test and confirmed by pet scan. I was in the clear for seven years. Peace of mind doesn’t have a price. Please get checkedFrances

My oncologist has never tested me for tumor markers.

It’s a blood test ca27,29 for br cancer. Mine was still in normal range but going up outside of my usual 20. Second test was out of normal range rising. Had to have pet scan to confirm.

Hi Denise

I had a pain in my tailbone that I chalked up to exertion. During a severe sinus infection I woke up to difficulty breathing.

I think you just have to find a way to get the meds. The hospital I work for has Charity Care. They perform outpatient CTs. Maybe pay for an oncologist visit and have their team look for grants. Google charities that help with medical bills

I wish you the best

I had pain in my ribs that I chalked up to getting older....71...and building a garden wall by myself. Check with the local cancer society and tell them your problem. They may have some grants that will help and some cheaper diagnostic tests through them. Elaine

I am very sorry to hear about your high deductible, that sounds scary. I agree with what someone else said about checking with a local Cancer society to ask about grants. There is one in the city near me, but only for people in that city. I hope there is something similar near you. I also tried GoFund me. It was excruciating to go so public with such a personal problem, and GoFund me took more of the money for administration purposes than I expected, but I did collect enough for the test I needed.

I was recently dropped from my ACA health insurance because I made too much money, but when I called the "contact us" number, I was able to switch to a Kaiser plan which is more expensive than what I used to have - but at least kaiser tends to have low co-pays. It is open enrollment period right now for those ACA plans. Is it possible for you to get something like Kaiser through them and either drop your plan through work or have it in addition to your plan through work?

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