If you are not Stage IV but have questions, you may post here

funthing42

Buttonsmachine,

Thank you for response. I'm on Ibrance and Fasolodex. I'm her2 neg.

Now not sure if still the same or if I should beg for a liver and node Biopsy.

Big Hugs ....

MJHJAN1014

Fun- consider Xeloda and perhaps Y90 radioembolization.

Best, MJH

wenweb

Hi everyone, I haven't been on the site for a while. I recently celebrated 9 years cancer free at the beginning of September, just before my annual mammogram, I began to have pain on (what seemed to be) a rib on the right side, same side as my original IDC stage 1 in 2009. I reported it when I checked in for my mammogram, and they changed the billing code to a diagnostic mammogram rather than a routine yearly screening. The mammogram was normal, but I was told I should have an MRI under the circumstances. The MRI was also normal. I saw my oncologist today who ordered a bone scan, after determining for certain that the pain was on a rib, not my breast. I asked her if I should be worried, and she said "maybe a little". I asked her if she knew the chance of recurrence for those who were stage 1 with negative nodes. Right off the bat, she said 2%, and laughed because she said she only knew because she is currently writing a paper... After that, she spoke openly and honestly with me about what if it turns out that I have bone mets. She said there is a specific type of bone met with BC, which involves only one location, and even though you are considered stage 4 at that point, that it is completely curable. Of course if there are more spots, thats a different story...I haven't shared any of this with anyone. I have been divorced for just over 4 years, and don't want to concern anyone in my family prematurely. I am concerned, not overly worried, but that's why I'm here...Anyone with a similar story or situation?

sherrmue

Hi! I’m Sherri,

I’ve been living with advanced BC since 2010. My docs feel I was in stage IV for several years before diagnosis.

If docs are throwing up their hands, get another opinion. NOW. Find the best cancer center you can reasonably get to, even if it means driving farther than you’d like. I live in a small town with a small town cancer center. Docs were throwing up their hands when I was diagnosed. The spread was so extensive on my chest and presumably lymph nodes they were flummoxed. They knew it had already spread. I got a second opinion at a well respected cancer institute 100 miles from my home. I truly believe I’d have long since died had I stayed in my hometown to be treated.

I’ve had several scares, most recently earlier this year. I have ILC with a particularly invisible growth pattern that does not show on imaging, other than in bone. My labs were showing that my liver would soon fail or I would bleed to death as my platelet count became very low. My liver looked fine on CT & MRI. Biopsy confirmed extensive infiltration of ILC. I had lost a lot of weight. I am 5’6” and weighed 110#. I’ve used up all of the hormonal and targeted therapies. During this period I additionally began sprouting skin tumors on my shoulders and back at the rate of 1-2 per week. I thought it was the end.

My doc prescribed Xeloda, oral chemo, in May. It’s really a newer generation of an old chemotherapy drug. After taking this drug for only about 2 weeks my skin tumors began shrinking rapidly. My liver enzymes began falling. I’d has cancer related (or so they thought) anemia for about 2 years. I no longer have anemia, I weigh 126# (gained 16#), my liver enzymes have returned to normal.

Xeloda may not be the right drug for your breast cancer, however I’m telling you these things to let you know that there is hope. My end of the road is not yet here, although a few months ago it appeared so.

Get the best treatment you can. This is your life. There’s no time for doctors feelings (yes, docs down here were calling the doctors at the cancer institute where I am seen, angry because I went to them). They tried to guilt me into staying put. I knew finding the best treatment possible was my only hope of extending my life for more than about 2 years. 8 years later I’m feeling less burdened by cancer than I’ve felt in a long time.

And, driving is not so bad for such an important cause if you have a good cancer institute where you could be seen. Let loved ones shuttle you about. Sit back and enjoy the scenery and sip you favorite drink. You deserve it.

I’m sorry you have to face this terrible disease. It’s frightening and confusing. I’ll be thinking of you and wishing you the best for a substantial and long lasting reprieve.

Fight,Fight,Fight!

buttonsmachine

sherrmue, thank you for sharing your story! That is such great advice, and I'm sure it will help everyone who reads it. :-)

My small town cancer center was also flummoxed by my cancer. Some people gave me guilt about seeking outside opinions, but I did it anyway. The outlook was bleak earlier this year, but now my cancer is under control.

Best wishes to you!

wenweb

Hi Sherri! Thank you for sharing your journey with me. I’m sorry you’re dealing with so much, and glad you have found excellent care. I’m in the San Francisco Bay Area and my current Dr, whose title is Primary Care Oncologist is fabulous. There are only a handful of oncs in the country that hold this title. I feel as though I am in good hands, but am not shy about advocating for myself when a situation requires it.

Thanks to you too, Buttonsmachine, and best wishes to you both. I will check in when I have more information.

ShetlandPony

^{HI, wenweb. Was the word your oncologist used oligometastasis? That's when there is only one or a small numberof mets in only one or maybe two places. In the case of a single bone met, they would typically zap it with radiation, which could be curative.}

ChesterandRally

I was wondering about bone mets. I have shoulder, both, neck and back soreness. Have been diagnosed with arthritis in my neck which they say is causing the shoulder pain on my left side. My breast cancer was on the right side only. Recently have had soreness in my tail bone and in my mid back and some in my left hip. I had a bone scan about 2 months ago and nothing was found. Now I read that bone scan may not be able to pick up certain mets. I was wondering about your experiences with bones mets? Is it really painful right away or does it start as soreness and get worse? I have arthritis and bone one bone knee problems. I am kind of a mess. Don't want to jump to conclusions but also don't want to overlook something that I shouldn't. Thank you for allowing us early stagers to ask you guys questions. I am in awe of your strength.

wenweb

Yes, Shetlandpony, that was the word my onc used. Thanks for that! ChesterandRally is saying she had a bone scan that found nothing. I'm not suggesting there was something to find, but am wondering if a Petscan shows different things than a bone scan and why one over the other is used. Does anyone know?

Chesterpony, I am sorry that you have so much pain. I hope you decide to question your onc about this so you can get some answers. Thank you for sharing your story.

Sadiesservant

Hi ChesterandRally,

I am no expert but typically the pain from bone mets is very persistent, often worse at night. Many people never experience pain from their bone mets while others can have quite a bit of pain.

I have extensive bone mets and have had to have radiation a couple of times to deal with it. The first issue I had was a serious bout of sciatica caused by tumors in my lower back. I literally could not walk in the morning when I got up. Radiation caused almost instant relief from this. In January I started experiencing pain in my right hip and an ache in my groin, particularly when I was in certain positions. I wasn't sure that it was the cancer in this case (I had hip pain when I went through chemo in 2001 and the groin pain seemed more in the muscles). I delayed but over time the pain continued to worsen to the point where I was almost limping. My RO treated the hip and the pubic bone which relieved the symptoms.

The challenge is that there are so many things that can cause joint/bone aches and pains. I certainly had my fair share of back issues before my stage IV diagnosis. My advice, if the bone scan did not show mets, would be to assume that it is arthritis. While it is always challenging to wrap our heads around it, the reality is that there is no survival benefit to finding metastatic cancer early (although I think it could be argued that is not the case with oligometastatic cancer) and there are risks to excessive scanning. I would also like to add that Arimidex and Tamoxifen can cause arthritic symptoms.

dlb823

ChesterandRally ~ Was the bone scan you had a nuclear bone scan or a dexa bone scan? Both are referred to as "bone scans," but there's a bit difference in what they detect. If you had a nuclear bone scan, that should show any mets activity in your bones. Nuclear bone scans are usually used along with CT scans as follow up for those of us who have mbc. The CT shows any change (growth, shrinkage) in the area, while the nuclear bone scan shows uptake or degree of activity. A dexa scan, OTOH, is used to diagnose osteoporosis and osteopenia. It's a much simpler, quicker test. It does not require a nuclear injection, and it's not used to dx bone mets.

Bone mets pain can vary from individual to individual, but in general, unless nerves are involved, it's a deep, aching pain that worsens, especially if it's not being treated. If you continue to have pain, I would probably ask for a PET scan or an MRI, but the fact that you've been dx'd with arthritis in your neck makes arthritis in those other areas seem like the most logical explanation for your pain. Deanna

wenweb

My bone scan came back negative! I thank all of you for your support, and wish you all the best. I'm still planning to chase down why I am having pain on my ribs...Best to all!!

alcoolal

Hi all,

Not sure if anyone is still awake, but I've been having a little mini freakout and wanted some info..

I am 50.. I had stage 1 er/pr+ Dec 2016. I had a low onco score (13) and did radiation and then started tamoxifen. Did that for 5 months and it messed with the ovaries, so they came out October 2017. Started Anastrazole Jan 2018. I've been feeling off, complaining about a weird sensation in my left arm/leg, then I started having these weird dizzy moments and more recently I feel like I have this bone pain in my right arm; then last week I fainted without any warning. My doc was out, so I saw this other guy and he looked me over and said I seemed fine, ordered blood work, told me I couldn't drive for a month and said to check back in with my regular doctor then. He called a couple of days later to go over my blood work.. he says that my alkaline phosphatase is high (138) and that looking at my blood work history, he could see that it had climbed 20 points since my last blood draw at the onco two weeks previous. A year ago, it was 87, is this kind of climb normal? What are the typical numbers for bone mets (he said he did an additional test to check my liver and it is fine) my calcium was a 9.9 if that makes any difference.

Thanks in advance!

chrissyb

Hi alcoolal, the arm tingling and bone pain you are describing can be caused by higher than normal alkaline phosphatase readings as it also pulls calcium from your bones. It would be a good idea to see your regular doctor and discuss ways to normalize this reading.

One of the se of Anastrozole is light headedness and dizziness. It is the same for Letrozole. Hang in there as it will ease back to a more manageable level once your body gets used to it.

Love n hugs. Chrissy

alcoolal

Hi Chrissy,

Thank you so much for responding. The dizziness is not caused by the anastrozole because I've been taking that since January and it only started up a couple of months ago. Also, what do you make of the unexplained fainting? And why would my reading go from 87 to 138 - that's a big jump, no? The bone pain is new.. it's just one spot on my arm.. it's not constant, it comes and goes, but it's not like the usual aches and pains I have had (many) in the past. My doc called yesterday and said I need a head ct, so I guess I'll start there. Thanks for any input.

Happy Tuesday

xx

Artista964

side effects don't always show at the beginning. Sometimes they come on later.

bevin

IAlcoolai - Im glad your doctor is checking things out. Jead CT and maybe bone scan would be logical.keep us posted

LoveFromPhilly

hi there alcoolal - I am really glad you’re getting yourself checked out. It is scary to see one’s own lab work showing disconcerting results

My understanding of alkaline phosphatase is that it is a measurement of liver enzyme activity (there are also ALT and ASP) is one of the ways that we can see what is happening with the health of our livers.

Higher alkaline phosphatase could indicate an issue with the liver or it can be indicative of bone diseases (from my understanding- related to an increase in bone production rather than a decrease).

It will be good to have further medical investigation to get this assessed.

I like this site to read about lab tests and how to interpret them https://labtestsonline.org/tests/alkaline-phosphatase-alp

Sending you tons of good vibes and positive juju. Hopefully you can take some time to breath laugh and get fresh air in the midst of it all.

DancingElizabeth

Hi Everyone,

I'm so scared right now. I should change my user name - back - to "scared67" which is what it was before...as I never stop being scared.

Today I found out that my MO wants to do tumor markers at my 6 month follow-up - which is next week. I don't understand why she wants to do it - now. Because the last 2 times - it was once a year.

My markers were normal last time. But, maybe she didn't like that they are up by about 1.4 point???

I think they were 11.0 in 2017 and 12.4 this year. But, I thought markers were supposed to fluctuate?? And, I don't know WHY she didn't tell me at my last appointment - that she was doing markers at the next one???

I almost feel like just cancelling the appointment - because this alone is taking years off my life.....

WC3

Dancing Elizabeth:

She is being thorough. I do the same with my thyroid tests. If my TSH goes up, I test again a little sooner so I have a better idea if it's an upward trend or fluctuation.

DancingElizabeth

Thanks WC.

But, I don't know why she didn't tell me that at my last appointment. Because that scares the cr^p out of me - that she feels she *needs* to do this test. She didn't tell me that I would need to do this - only 6 months later.

All she told me - was that I "graduated" to seeing her every 6 months instead of every 3 months and that my labs looked good. Nothing about them being suspicious....

So - now I freak out...but...nothing new there - always looking over my shoulder because of this disease!!

EDITED TO ADD: MO just emailed me that tumor markers "are done every 6 to 12 months". I still don't want it done. Oh well...thanks everyone for listening to me go crazy!!

Sara536

DancingElizabeth,

I love your name! Please don’t change it back. I bet it it has a positive influence on you (how could it not?) even if you don’t always feel like dancing.

DancingElizabeth

Thanks Sara!!!

pajim

DancingElizabeth, believe it or not, this could actually have nothing to do with you! Maybe your MO just saw a patient whose TMs were unexpectedly up and she wishes she'd tested them earlier. Maybe someone came in with no symptoms and turned out to have a major problem. [That happened to my MO]. So she's projecting on to everyone else.

We forget the doctors are people too. . .

ShetlandPony

And DancingElizabeth, I can tell you that a 1.4 difference in CA 27.29 (the tumor marker I am familiar with) is nothing. Nothing. Really.

Artista964

mine doesn't do tm. Says it's unreliable. I never questioned it. I figure i watch for symptoms not resolving in 2 to 3 weeks and go in. Finding something sooner doesn't increase your survival.

bevin

My MO feels like its another piece of information to help tell a story. i like getting them done. The more informarion the better for me. My TMs wobble from 15 -21. As I understand, Only if they're out of normal range and show an upward trend above normal is there reason to be concerned . Good luck. I hope all turns out well.

DancingElizabeth

Thanks Everyone...that really helps!!! I guess I'm just feeling *scared* about my appointment this week. Have had a lot of anxiety about this...

NancyD

My CA 27.29 has shown a steady increase in the last five years. In 2013 it was 27.1 and last month at my annual onc visit, it was 38.3. In the intervening five years, it has only gone up, not back down at all.

My on never said anything about it, maybe because it's still within "normal" (just barely). I just noticed it because they started putting charts and test results online, and I could compare the last few years.

I'm not one to call my dr without due concern, so I haven't done that. Would you?

MelissaDallas

My understanding is normal is normal. Example, when I had ovarian cancer it wasn't just a little off - high end of "normal" range for CA125 is 35 and mine was almost 1000.