STEAM ROOM FOR ANGER

Artista928

Just confirmed on kpix local news...if you have power it won't go off.

LoriCA

That's good news for you Artista! Winds have just started down here in SoCal so everyone is on standby over the next 24 hours to see if they are going to lose power.

Wanderingneedle

Gotta love SDGE and their communication!

edj3

Two rants today.

1. My MIL has been diagnosed with ulcerative invasive melanoma, it's nodular and >10mm in depth. Ulcerative, invasive, and iodular are all indications of advanced stage. She's 83, in a nursing home with early Alzheimer's and is my husband's only surviving parent. She's also the sweetest person, I adore her and this STINKS.
2. I sent a message to my MO a week ago about the heart rate issues that started after I went on tamoxifen. In that email I said that I'd stopped (gave the date I stopped), and mentioned that a couple of other minor side effects started around the same time but weren't the reasons for the message. I don't think anyone actually read the message, b/c today the RN was all "hot flashes are normal" about it. YES, I KNOW THAT. The HEART RATE ISSUES are what concerns me.

bcincolorado

edj you might need to call and actually try to talk to a nurse if possible. Explain you understand the hot flashes are normal but heart issues are not. Explain what happened to your BP and give her real numbers of what they were if possible so they can document in your file. Sometimes I think they just skim over some parts of what they see if you ask me.

edj3

I'll see the PA next Thursday--hope he/she listens better than that nurse comprehends text!

sweetp6217

What is with the billing of mammograms after the so-called cure? Ever since I had treatments and was told that the cancer was gone, the mammograms haven't been free. "See you again in six months". Talk about a kick in the you-know-where! OK, I'm a little off. The mammo was free but the doctor who looked at the images and offered her "opinions" charged me over $150.00. Is it the coding to the insurance company? Or rather, have we been dumped in to an ever growing bowl of "look! they got cancer, now we don't offer fully covered mammograms! Yippee!, more money for us". The "free" one didn't catch my cancer when I believe it should have, thanks to density of breasts. Makes me want to stop going.

ShetlandPony

It is probably the case that you are getting Diagnostic Mammograms for the next few years. Then you will go back to Screening Mammograms, which are less expensive.

DogMomRunner

And the diagnostic mammograms are the same as the screening ones. They just cost more. Ridiculous

exbrnxgrl

According to the article below, diagnostic and screening mammos are not the same. The article is a very simple explanation and doesn’t address cost

https://www.nationalbreastcancer.org/diagnostic-mammogram

DogMomRunner

exbrnxgrl- I'm glad I'm wrong about it. I was going off what I was told about screening vs diagnostic colonoscopy. Which could also be wrong information

Artista928

It might be coding.

marijen

I don’t get why they send us for a mammogram every year but neglect screening on the rest of our bodies as recurrence is 85% distant and only 15% local.

sweetp6217

I hadn't thought of that marijen, thanks.

Beesie

marijen, where did you get the information that recurrence is 85% distant and only 15% local?

It's actually different for everyone. Those who have a MX generally have a very low local recurrence risk - usually only 1%-2%. But those who have a lumpectomy face a risk that is more in the range of 10%-12%. That's an average for everyone; someone with a small low grade cancer and good surgical margins might have a local recurrence risk of 5% but someone else, with a large and/or aggressive cancer with narrow margins, might have a local recurrence risk of 20%.

As for distant recurrence risk, this can vary from as low as 4% or 5% (or lower) for those who have non-aggressive cancers and low Oncotype scores, or as high as 30% (or higher), for those who have aggressive cancers and/or high Oncotype scores.

So for some people, local recurrence risk will be higher than distant recurrence risk, and for others, distant recurrence risk will be higher than local recurrence risk.

When it comes to breast screening, for those who've a a lumpectomy or UMX, the other consideration is that they also face the risk of a new primary breast cancer. Once we've been diagnosed with breast cancer one time, our risk to be diagnosed again - at any point in our future lives and in either breast, and possibly with a different type of breast cancer - is about double that of the average woman who has never had breast cancer. For many women with DCIS or early stage invasive breast cancer, this could be the highest risk they face, higher than local recurrence risk and higher than distant recurrence risk from the previous breast cancer diagnosis.

So breast screening aims to find both local recurrences and new primary breast cancers. Combined, for most women those risks are greater than their risk of mets. Not for everyone, of course, but for most of us.

As for the effectiveness of breast screenings, that's a different topic!

Artista928

That's what I was thinking Beesie!

marijen

Well I'm still looking for it. I posted an article/study somewhere here about two years ago I believe. Either at Stage II Sisters, or Will 30% Go On to Metastasize maybe. Anyways the percentages would be like 85% of the 30% that metastasize and 15% of 30%. So Beesie can you figure that out? Does it fit with an average of your figures? Needless I am not happy that we don't get some kind of full body screening just to be sure.

Beesie

marijen, I'm totally guessing here but if the article you read was about the 30% of early stagers who metastasize, perhaps they were saying that 85% develop mets without there first being a local recurrence, whereas 15% develop a local recurrence first and from there they develop mets. I don't know if that's what the article said but that would make sense. I do know that the vast majority of patients who develop mets do not first have a local recurrence - their only recurrence is metastatic.

If that's what the numbers you saw refer to, then there was no discussion at all about local recurrences that never develop into mets, which is the majority of local recurrences.

marijen

That sounds right Beesie. I am most concerned about distant recurrence.

sweetp6217

Studies, etc. are what they are. But each individual (as we all know) are unique. Isn't it better to err on the side of caution or catch it before it gets full blown? I knew several who's insurances wouldn't allow for further testing even though the chances were possible there. Some of them also waited because, "if it feels worse...go to the immediate care/hospital". "You know your own body". A doctor recently took a chance with me to have me tested for heart problems (possibly a result of meds or maybe not) even though it's probably good old anxiety. She says it's their job to err on the side of caution.

P.S. Before I started chemo over 2 years ago, they did a PET scan from head to knees to just make sure that it hadn't spread. It took me more than 6 months to convince them that I should have a DXA since my joints gave me problems for years anyway. They agreed to do it FINALLY, right before radiation treatment started, as a base line and since I was told that bones could be effected. Numbers shnumbers! I'm picturing myself telling them that I was right, after I break my hip from a fall.

M0mmyof3

Sorry gang but I need to vent some rage about cancer! It took my buddy Joe this morning!

I wish cancer would get itself and F&$%#*^ DIE!!!!!!!!!!!!

Beaverntx

MOmmy, sending hugs to you in your loss. Even when we know the end is near, it still hurts mightily. Take care of yourself as you grieve Joe's passing.

Beaverntx

MOmmy, sending hugs to you in your loss. Even when we know the end is near, it still hurts mightily. Take care of yourself as you grieve Joe's passing.

M0mmyof3

Thanks! My heart is shattered into a million tiny pieces.

mara51506

Mommyof2, My heart goes out to you, your family and friends. It is so hard when fucking cancer takes our family and friends and every person lost is a tragedy. Healing thoughts and sympathy are coming from me to you and your family. I am so sorry.

Sorry about the swearing but I lost my mother to cancer and I have stage IV and it really makes me angry when this disease takes the people we all love.

M0mmyof3

Yeah. I am ripped up inside while trying to help another friend deal with this. Joe was like a kid brother to me and it really hurts.

bcincolorado

I am so sorry for your loss mommyof2. Cancer is awful no matter what kind it is.

M0mmyof3

Thanks. Cancer is something I could never wish on my worst enemy. I have lost a friend and family members to this disease. My mom and I are both lucky to have survived this disease. I hate it when we lose another person or even a pet to cancer

mac5

Thank you for this thread!!!

I HATE this freakin S@#$! “Your Recurrence Rate is on 5-6% for IDC in the other breast so we’re not going to do a bilateral MX.”

NINE years (plus one week) DX with ILC in the other breast! What, I couldn’t get one more year? Why didn’t you just take both like I asked you too to start with!

And to the PS who told me 9 years ago I was too “mature” and my BMI was too high at 31 to consider Reconstruction for the one they took, can I just say a big “Up yours too!” I’d like to see the look on his face when he realizes not all women who get BC look like 20 year old models!

And too the MO from two weeks ago that said chemo and Radiation wouldn’t work on ILC...SHE had written a “Paper” on it. I’m sorry I have no words even remotely considered too profane to talk.

I’m sputtering. I’m not a vocal person. I’m not an aggressive person. I’m a Southern Lady born and bred. I can’t say the word S@#$ in public. But I got another MO’s second opinion and the agreement to try 3 months of chemotherapy to see if this 10 x 7 cm tumor will shrink and see if the chest wall disease will be effected.

I don’t want to apologize to anyone about standing up for myself. If I die because I didn’t want to do it “their way” I’ll just be dead

Beesie

mac5, not to make you any more angry, but who ever told you that "Your Recurrence Rate is on 5-6% for IDC in the other breast so we're not going to do a bilateral MX." flat out lied.

First off, breast cancer does not (or at least virtually never) recurs in the other breast. Breast cancer cells might travel from the affected breast into the body, but rarely do they skip across from one breast to the other. But as women with breast tissue, we can all develop breast cancer again - a new primary cancer, unrelated to the first cancer - and in fact because we've been diagnosed before, our risk to be diagnosed again is increased.

You were about 60 when first diagnosed, correct? The average 60 year old has an 8%-9% chance of being diagnosed with breast cancer, with most of that risk being when she in her 60s and 70s. My MO told me that having been diagnosed once, my risk to be diagnosed again was about double that of the average woman my age. Using what my MO told me, it means that your risk to be diagnosed again was more in the range of 16%-18%, not 5%-6%.

I don't blame you for being angry. You knew what was right for you and your doctors wouldn't do it. And you are the one paying the price for their bad decision. I'm so sorry.

Doctors who don't respect their patients. Doctors who don't understand that the patient has a right to make her own treatment decisions. Doctors who don't provide their patients with the information they need to make their own treatment decisions. Doctors who lie to coerce a patient down a specific treatment path. That makes me angry.