Stage IV Breast Cancer, my mum, Please help with my concerns.

StayStrong101

Dear Beloved and Strong members,

I feel as though I need some honest advice on what to expect, I am really unsure .Sorry that it is so long but please read I will give you some background.

I am 19years old, My mother is 56years old, she was diagnosed with Breast Cancer in May 2010 of the left breast, they couldn't tell her a stage (and I'm still not sure why), with her they did things a little different. They said they were going to try and shrink the tumor as much as possible before removing it. They did 12 weeks of chemotherapy (not sure which one they only used the word most aggressive every time we were there), she then did 6 weeks of radiation, with the time in between and the wait on surgery they operated and successfully removed the whole tumor through a Full Mastectomy including removal of lymph nodes from under the left arm in Mid December 2010. They then did tests and confirmed they had got the tumor, this was suppose to be the day where everything would get better and go back to normal, not the case, the doctor added the bad news on Christmas Eve may I add, the cancer had spread to her bones. The doctor now classified the cancer as Stage IV Metastatic Breast Cancer.He said her expectancy is 12months to 36months. She has been on Zometa once a month through a port they have placed in her chest, they say this will not help with the cancer but will reduce breakages and pain. Now it is 20months later and she has been well up until now, working, eating, sleeping. The family have been supportive and positive. However, last month when she went for her Zometa they said they are worried about her weight loss (8Kg in a month) she says its from eating well and going to the gym, she weighs 65kg, from there for the past two weeks she has been having sharp pain in her right hand side near the rib cage at the back (very bad, she won't ever mention pain unless it's absolutely terrible) she has been crying it's so bad, she has days where she doesn't feel like eating, she physically can't hide the pain its obvious she is hurting and it's getting worse, she gets very frazzled, she is very tired and lethargic and says she doesn't feel right, she also has these fits of laughter out of nowhere (I'm happy if she is just being happy but this is very random and worries me). But, she won't go to the hospital, she says there is nothing they can do anyway and she doesn't want people prodding anymore, she wants to be at home. She has a CT scan at the end of the month as she does every three months, I'm worried this has something to do with her liver ( I really hope not but the doctor warned us about this).

My questions are:

Does this sound like her liver?

If it does what would that mean?

Is her downward progression alarming as it is happening so quick?

Any other advise would be great, thank-you in advance.

Sorry for the long passage, I needed to vent I will worry about this all month and I can't worry to her she says I am her rock (she is divorced)so she needs me to be strong, It is so sad this happens to people with no reason why, I pray for each and every person going through this battle, so strong and couragious.

P.s.I am not intending to be negative I hope this has a positive outcome but the worry isstrong. I send her positive rainbows everyday.

Thank-you again,

My heart goes out to you, Love and respect. Rainbows of strength to all.

Surly

I'm so sorry to hear about your mum and if you feel helpless. My breast cancer spread to my liver and bones and I was Stage IV from diagnosis in March 2010. Not being a health care professional, and not knowing enough about your mum's condition, I can only guess what is going on. I do have some questions you might want to consider or ask her doctor if you go with her to her next appointment to have the scan read.

-If she had a CT scan a few months ago and it didn't show any spots in her liver at that point, I would be surprised if she had liver tumors that appeared in that time frame that would grow so big to cause pain. I would guess the pain is from something else. It doesn't mean it's not something to be concerned about if it isn't the liver. I strongly suggest you try hard to get her to see her doctor.

-I am also wondering why she is not on any kind of chemo. Since I have liver mets, that is the area of great concern for my onc, so I have been on several regimens, and I have no hot spots in my bones right now. That must mean the chemo worked on the bones as well as the liver. But this will betray my own lack of knowledge: Maybe patients who have bone mets only don't have a good chemo drug option. I just don't know. But I would ask her doctor about that. If there is a chemo option for her and she is not refusing chemo, I think that would give her a lot of hope. 

-I'm also a little surprised that the doctor gave her a prognosis like that. From what I hear, most are reluctant to give a prognosis unless really pushed, or they will qualify it several ways. There are all kinds of statistics out there, but there are sooo many kinds of breast cancer, and every patient responds differently. Even two patients with identical diagnoses could respond to the same chemo vastly differently. You and she should not take that prognosis as a definite window of time. If I have learned anything the past 2 years, it's that for all the great knowledge and experience the doctors have, there is still so much they do not know and cannot predict.

-I don't know where you live or what kind of health care you have available, but many cancer centers offer palliative care experts that can help manage the pain and help improve quality of life. At the least, I think she should seek out more health care advice from her nurses or the breast cancer center. The oncologists are not very good at the softer side of this business. They can be too objective and look at only results and numbers and statistics and not at managing side effects or offering ideas on quality of life. Perhaps the clinic has a social worker who can visit with her to help connect her to other resources. There is no reason she should stay in the dark or think there is nothing that can be done. There is something that can be done. Even if her disease is progressing, she does not need to suffer or accept her worst fears. If this were my loved one, I would beg her to seek medical help as a favor to me and the people who love her. Use every trick you have! Could you get her oncologist to call her up? If not, maybe she needs a new oncologist. A second opinion might be a good idea.

I hope something here is helpful. Your mum is lucky to have you looking out for her. Good luck! I hope others here will have even wiser words for you.

StayStrong101

Dear Surly,

Thank-you so much for your reply.

She didn't have spots on her liver at the last CT scan, she did have some on her shoulders. They didn't give her cancer a definitive name except for Stage IV Metastatic Breat Cancer to the bone and to be honest not much is formal as it is through the public health board, she sees a different doctor nearly every appointment and if the news is not to great they will send her to see the nurse who will tell her the bad.However, they said her cancer is the kind that does not slowly develop they said catching cells in her would be almost a losing battle by the time they check, they are already tumours.

 They said to her there is nothing more they can do for her, they said if more chemo were offered that would take her life faster than the cancer. They also mentioned treatment was not an option. They told her to get comfortable and organise life affairs, they said they will continue the Zometa until the final stages. He said his prognosis was made from her individual cancer progression and blood results. They really do not formalise these things at all, they just put it in simple terms and say there is nothing more we need to know.

Thank-you for your kindness again,

It shows the public hospital has very little care.

Surly

I am so sorry to hear that she is not getting the level of care she deserves. I don't know what country you're in, but I would encourage you to seek an outside advocate from a breast cancer advocacy group of some sort. Maybe start with the American Cancer Society if you're in the U.S. (http://www.cancer.org/) They at least could tell you where to turn. I know there are people on this forum who would have ideas. Maybe this post will make your question rise to the top of discussed topics again. 

Whatever happens, I hope she enjoys every minute and day she has. Enjoying her time, pain free, with people who love her, and feeling like she has some control over her decisions, will help her--and you.

Hang in there.  

Surly

P.S. My feeling about all health care these days is that patients and their family members have to be their own advocates and just not take "no" or "there's nothing we can do for her" for an answer. I just don't believe that that's the case. You need to push and insist that someone step up and help her navigate her health crisis. Do not leave the room until they deal with you. Don't let them shuttle you to someone else to try to appease you. Insist that she is a human being with basic rights, and if she were the mother of any of those nurses and docs, they would not have the gall to say, "There's nothing we can do; go get her affairs in order." This is their job and their moral responsibility.

I know this is so easy for me to say, but I do know that they are hoping that you just go away. They will deal with you if you stand in the lobby and be insistent and demand action. This can be done kindly and respectfully, which would be more successful. Appeal to their good nature.

Sorry if I am making assumptions about your situation. But I sense you just aren't getting the proper care and attention, and my heart goes out to you. In the end, you will want to know you did whatever you could.

Take care. 

silentbell

Sounds like you should get a second opinion. I have heard that you don't die from bone mets, the cancer moves into the organs - liver, lungs, brain then it does some damage. Some pepople lkve a long time with a lot more than bone mets. If they say they can do nothing for her and she only has mets in the bones, I wluld seek treatment elsewhere Best of luck to you guys