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breast cancer metastasized to my bones

linda24
Posts: 3
Joined: Oct 2012

Would like to find a friend to talk to. Made it 4 years past my stage one breast cancer diagnosis. Thought I was a survivor and starting having terrible pain in my shoulder and right arm, hips and back. Diagnosis and biopsy done and there it was. My doctor said I have incurable cancer. All they can do is treat the symptoms. I might make a couple more years. Just finished radiation. Dr. doesn't want to do Chemo. That doesn't sound good.
Just looking for some support out there. Anyone been in this spot? Talk to me please..............

desertgirl947's picture
desertgirl947
Posts: 401
Joined: Oct 2012

One of my best friends had that happen to her. I know that she did what was available for her to do to try to get it under control, and it did work for awhile. She did chemo, as I remember her saying that the chemo for her second round of cancer went smoother for her than the first time, which I think was in 2002. I forget when it was that the cancer went to her bones, but I think it was in 2005. Her pain was more in her hips and her lower back.

I think that you are right. There is only so much that can be done. My friend Val did what she could until nothing seemed to be getting the best of the cancer. Not too long after she gave up fighting it any more, she did pass away. That was two years ago this month. Up to near the end, she tried to do more than just stay holed up in her house. I know that two months earlier we had done our usual Labor Day outing -- she and I and our husbands. It was evident that the outing was tiring to her, although all we'd do is drive to a nearby town to get ice cream at one of those stands that get set up around here for spring/summer.

I wish I could offer you more hope than that. But I am assuming you just want to see that someone here sees you need someone to "talk" to as you work through this.

You will have the support and prayers of many here on the boards.

The optimisitc point, though, that I can make is that each year strides are made in fighting cancer. You never know what might be out there in the near future. I know that for me, I have had more options than did my friend when she was diagnosed with bc. That could be the same for you with bone cancer.

As always, if you have any doubts about all of this, take the time to get another opinion.

e

roseann4
Posts: 994
Joined: Sep 2009

I had a friend who lived 20 years and that was 5 years ago. Hope, hope, hope! Please don't despair. We are all going to die someday. Don't let anyone tell you when.

Roseann

New Flower
Posts: 3914
Joined: Aug 2009

Hi Linda!
I am sorry that the cancer has progressed to your bones. I am also sorry that your oncologist is giving up and not willing to look at other options, including Chemo. There many choices for Chemo which are applicable for stage IV patients. I do not your exact diagnosis, however I think you should try several Chemo therapies. Also there is treatments for bones, including injections of Xgeva and IV Zometa which help to improve bone structure and prevent fractures. Unfortunately after 4 years in remission my cancer has progressed to my bones too and I am undergoing Chemo for the second time in the past 4 years. My regimen is Xeloda and monthly Xgeva shots. You should seek second opinion and seek an additional treatment if your overall health permits. You can always send me a PM if you want to talk privately.
Keep us posted
Hugs

VickiSam's picture
VickiSam
Posts: 8219
Joined: Aug 2009

As stated.... many Sisters in PINK -- live for years as Stage IV, and I am sure they
will chime in here on your post.

My only suggestion would be to get a 2nd opinion as quickly as possible (insurance
permitting). Put a game plan together, and go on from there.

Strength, Courage and HOPE for a Cure.

Vicki Sam

Confused39
Posts: 8
Joined: Jan 2012

My mom is an 11+ year survivor of stage 3 breast cancer and is now waiting for a biopsy and bone scan because a CT that was ordered for shoulder pain came back showing a few different lesions that appear to be bone mets and 1 lung nodule. While waiting for confirmation, I have been all over the cancer sites looking for information on stage 4 and am relieved to know how much hope there actually is even after cancer has spread!

PLEASE go to the Stage IV threads at BreastCancer.org! There are women there who are working and living perfectly normal lives even with stage 4! You can find all kinds of information on the MANY different types of treatment options as well as support from women who are newly diagnosed and those who have been living with mets for anywhere from 1 to 19 years!! Don't let a pessimistic doctor rob you of your chance to do everything you can to fight this! It is now commonly treated like a chronic disease as opposed to a terminal illness.

SIROD's picture
SIROD
Posts: 2116
Joined: Jun 2010

Hi,

I was one of the ladies that responded to your post the other day. I do want to hear what the doctor states after your mother's biopsies. This site is a very good site with lots of cheerleaders for those who have stage IV. I post on 4 other sites and read their posts daily and reply when I have something to say.

Why I came here is that when I began online in 1997 the board was for everyone, stage 0 to IV, caretakers included. I guess for me if feels a little like home. The forum I belonged to lost their funding. It had been a grassroots operation from the start by women who wanted to do something for breast cancer and someone knew how to start up a discussion board. It was one of the few places on the internet back in the late nineties. Avon had a board and so didn't Komen whose board was very hard to use.

For your mother, my advice is read, read, read. Try to understand that the type of cancer your mother has and therefore you can ask good questions if you will be included with the oncologist.

I was diagnose by the way back in August, 1994. You might want to check out MBCN web page and it is filled with stories, advice for women who have MBC (Metastatic Breast Cancer). The longest time a woman lived with mets was 30 years. That I have read, perhaps some have lived longer and have not posted. This is her story if you want to read it. Her name was Rita Arditti and it was her story that gave me hope back in 2008. Copy and paste the following:

http://mbcn.org/get-involved/details/my-story-rita-arditti/

Best to you and your mother,

Doris

Confused39
Posts: 8
Joined: Jan 2012

I appreciate you taking the time to help me.

My mom had an ultrasound last week and a full body bone scan yesterday. Her biopsy is scheduled for a week from today and as far as we know, the onc won't tell us anything at all until he has ALL of the results back. I was hoping that he could at least let us know what he thinks no that he has seen the original CT images himself as well as the ultrasound. It's so nerve-wracking! The fact that her swelling in the clavicle head has gone done about 98% has us even more perplexed and hoping that this is something other than cancer.

The waiting is especially hard for my mom because of the pain. It has gotten considerably better but she still does have pain when she moves it a certain way so she can't drive to be as active as usual. This means a lot of time spent sitting around worrying.

I am going to call the onc today and see if he can shed some light on the results he has gotten so far and tell us something -- anything really. I understand the likelihood of this being mets, but between the small-town cottage hospital radiologist and the ER doctor who was quite misinformed about cancer and told my mom her "body is a mess" upon seeing the results, I can't help but question the accuracy of what we have been told so far. In the meantime I am going to print off some of these inspiring Stave IV stories for my mom to read.

Thank you so much again.

SIROD's picture
SIROD
Posts: 2116
Joined: Jun 2010

The fact is early stage cancer, 0 and 1 can often morph to stage IV. Early detection is a farce as I have known so many women with those stages go on. One can say early detection might give one a better chance and that 70% of women do remain cancer free the rest of their life.

You better change oncologist, he sound like he is tired of his specialty in medicine. He should be report to the center you go to as someone that need to retire or find some other line of work. Do not go back to him.

The majority of women who have metastasis do have it start off in the bones. Mine did in 2000 and I am still here at the end of 2012. In 2008, I had my 3rd recurrence of widespread pulmonary and pleural metastasis. Because of the length of time between 2 and 3 recurrence, I needed a biopsy to see if I was still ER+ or had the cancer mutated into something else. The surgeon who did my VATS stated I was studded with tumor in his surgery notes. My oncologist showed me the PET/CT scan on the screen and my lungs looked like neon signs all lighted up. All my doctors didn't think I would be around and still employed at the end of 2012 but I am. I was NED from the time I began Arimidex in 2000 to 2008. I have not had NED (no evidence of disease) return, I still have cancer in my lungs, pleura and ribs. Metastasize cancer is treatable but there is no cure at the moment.

There is great hopes that soon our own tumor will be looked into and they will find the right drugs to treat it as they will know the make up of the tumor and what will work on it. The technology isn't here but it will be and please hold on to that thought!

Find another oncologist and report back to us. Your cancer is treatable and you have a life to live.

Best to you,

Doris

CypressCynthia's picture
CypressCynthia
Posts: 3873
Joined: Oct 2009

First, I am so, so sorry to hear of your metastasis. It is true that, currently, there is no cure for Stage 4 breast cancer. But, having said that, you don't come with an expiration date either, so noone really knows how long you have.

I have estrogen receptor positive breast cancer and have been 3 years with bone metastasis (4 in April 2013) and I am doing well and in remission again. I responded well to radiation and hormone therapy and a bisphosphonate. I am currently on faslodex (hormone therapy) and xgeva (a bisphosphonate similar to boniva).

Good luck!!! And big (((hugs)))!!!

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

Hi Linda,

Although I don't have bone mets, I do have mets to the lymph nodes between my lungs. And recently completed brain rads for mets to my brain. In my case, the rads worked...no more brain mets. Have they determined yet how well your rads worked?

I agree with others, I think you should find another oncologist. Or at least get a second opinion. Although it is not "curable" there is much that can be done to keep you pain free and allow you to maintain quality of life for many years to come. You need to find a doc with that philosophy...not an expiration date.

And no matter what, you ARE a survivor. Don't let anyone take that away from you.

Hugs,

Linda

camul's picture
camul
Posts: 2004
Joined: Dec 2010

I just stopped my fourth chemo in now over 2 years and today I is my 3rd birthday since the mets dx. Chemo works, I have defied the odds as mine was very widespread when I was dx, and I pressed my doctor for a timeline which he said was an average, depending on how my body responded to treatment. I see my onco Friday and will see the next plan of attack!

I, like Cypress Cynthia am on xgeva to strengthen the bones. Also Herceptin and a hormone blocker. I use a Fentanyl patch, take Ativan at night to sleep. I still enjoy life I am 55.

I really like and respect my doctor, but I still got a second opinion, they gave the same protocol. Life does not stop with mets. I see it as a chronic condition and am hopeful.

pinkkari09's picture
pinkkari09
Posts: 878
Joined: Sep 2009

Hi LInda and welcome to the board of wonderful people who will always be here for you. I too have mets to my bones, over the last 3 years it has gone from my left breast to my lymph nodes, including inner mammery and superclavicular nodes, my bones, and now my brain. I've had 9 different kinds of chemo, several radiation treatments, etc. I'm glad you found this site and I hope you keep coming back, someone is almost always available. So much has already been said and I have to agree with all the posts. Sending positive thoughts your way and keeping you in my prayers.
Miles of Love,
~Kari

missrenee's picture
missrenee
Posts: 2137
Joined: Apr 2010

Like many others here--I was re-diagnosed with Stage 4 bone mets after only 2 years since my original diagnosis. My bone mets were in my spine/pelvis. Since then I have been on monthly injections of Faslodex (which suppress estrogen since the cancer is highly estrogen positive) and monthly Xgeva injections--to strengthen and build bone. My last PET scan showed NO EVIDENCE OF DISEASE. Not cured--but in remission. As several gals here have said, some are able to maintain this status for years.

If you feel like your doctor is acting like there's nothing much left to do--FIND ANOTHER DOCTOR--FAST. There have been so many breakthroughs in keeping Stage 4 breast cancer patients in remission and there is so much hope.

Hugs, Renee

SKBarger
Posts: 2
Joined: Oct 2012

Linda,
In April of this year my initial diagnosis was Stage IV. Less than 4% of cancer patients are diagnosed at Stage IV so I can relate to you needing someone with a similiar situation to relate to. When the doctor told me there was no cure, only treatment, I was shocked. But then he explained it to me that we will treat my cancer as a chronic illness, much like someone with diabetes. He said that for a while one treatment will work but will eventually stop so then we will try something else. Currently I am only taking Tamoxifen because I am hormore positive. This will not get rid of the cancer but will help it from spreading. I am also taking a monthly injection of Xgeva to help strengthen my bones. Side effects from both of these are minimal (other than hormones going all over the map due to being thrown into menopause).
Once you get past the "no cure", you can start to focus on the "ok, I can live with this." Don't look at the statistics, most of those are based on information from years ago and do not take into consideration all of the treatments available today. I have chose to focus on the 15% that survive past 5 years instead of the ones that don't. I tell people that I am going to be in the 15%.
Sometimes the "what if's" like to rear their ugly head but don't dwell on that either. Try to focus on the positive things in your life.
I have always said that you can either laugh or cry and I am an ugly crier.

I am still working full time and trying to maintain a normal lifestyle so I may not get on the CSN very often but know that I and others are here for you.

Fear ends where Faith begins,
Sharon

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