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

Hi ShetlandPony,

Thank you so much for taking the time to respond. It is so amazing of you all to check in on us here. My energy and love is flowing your way. I am so pleased to hear that you indeed did experience few side effects. I hear the shots are big and there are many tricks of the trade for injecting them. I am very ready to give them a try, and excited to even have this option.

Sending you my very best!

Tangandchris, extreme, lingering fatigue should definitely be checked out -- not because it's necessarily a symptom of mets, but because if anything in your body is out of whack -- such as low thyroid, which can cause fatigue -- it can increase your risk of a recurrence by putting more of a burden on your immune system. Maybe start with your PCP and some simple blood work. That could lead you in the right direction. Are you dealing with a lot of stress? I'm asking because that, too, can cause severe fatigue, and also needs to be addressed before it puts your health in jeopardy. So I would certainly consider severe fatigue as something that needs follow up, before it opens the gateway to something more serious. Hugs, Deanna

Hi been lurking here for awhile, this site is so great for information, and you make everyone feel welcome!

I finished chemo in June of 2016, finished Herceptin in Feb. 2017. Had a cat scan in March on lungs. they found left lung with 2 3MM spots and 1 6mm, right lung with 2 3mm spots.

Just had a follow up scan showed left lung 3 3mm and 1 7mm and right 5 3-4mm spots. But the Radiologist states unchanged in appearance and suggest follow up in 12 months. Does this sound right?

how can it be unchanged with the 6mm now 7mm and 4 more spots found.

Montana, scan measurements often are not precise or finite. A difference of 1mm is probably just a difference in image quality or interpretation. Also lung "artifacts" from previous things like pneumonia or bronchitis are very common. Hoping that's all it is, but if you are not comfortable with waiting a year to be rescanned, perhaps your onc would agree to redoing it in 6 mos.

Mom2four, it's impossible to tell anything from the behavior or a rad tech. Keep busy this weekend and try not to overthink it. There are many things that can cause vertigo, but with a bc hx and ongoing complaints, your onc pretty much had to order an MRI. Hopefully, it will be clear.

Bosom, if I was in your situation, I would maybe look for an MD who is into functional medicine -- a newish specialty that puts the emphasis on finding and addressing the cause, rather than just treating symptoms. They're normally primary care docs or internists -- just with a slightly different, more natural, bend to their approach

Question for my mom age 90, has been stage IV for 4.5 years with bone mets only. Scan today showed 3 or 4 new small liver mets. She has only ever had Letrozole and xgeva, then Letrozole/Ibrance with xgeva shots monthly. I am trying to brace for the oncologist appointment tomorrow --what kind of treatment do you think might be possible for her next? ER/PR+. Her2-. I want to give her hope --it is really important for her.

I posted this on my own thread but it's pretty quiet.

I guess it's just overwhelming giving all these tests and no diagnosis yet. Different from my initial diagnosis which was cancer as soon as I saw the mammogram picture...

I've had a bad chest cough for months and many tests.

I still have no diagnosis and am in some discomfort with breathing and coughing.... we are hoping the flixotase im huffing will help calm the irritation. over the last weeks I've had multiple GP visits, a consultation with my oncologist, a blood test, chest X-ray, 3 CT scans, spirometry test, coming up tomorrow another spirometry test, bronchoscopy the next day, then a visit to the respiratory specialist next week- hopefully with staging/ a diagnosis, also have a mammogram and as of today, I've been referred to see a gynaecologist about cervical issues.....

lungs- left not inflating properly, but no signs of calcification, infection, no inflamed lymph ( this is good). Left bronchial blockage - need to take samples to decide on a remedy- possibly breast/ or lung cancer.

Heart- good

Liver, kidneys and other organs - good ( tho liver enzymes v. High)

Lady bits- TBC. Thickened lining and irregular heterogenous appearance...gynaecologist wil need to take samples and check fior cervical cancer.

Hoping for an easy resolution to all this.

Thanks for reading

Hi Deanna.. thanks for your reply. I'm in New Zealand.

My first cancer diagnosis was so quick and simple and I went in to staging and treatment straight away.

I am attending the same hospital which is big and well resourced. All the specialists are there.

The main difficulty is that the techs can't tell me anything,. I have to wait for my doctors to meet next week and then my consultation after that. In the meantime I'm quite unwel with this respiratory thing.

The first CT was of my chest, no contrast. This Identifies a shadow round my left bronchial tube and partial collapse. The second and third CT were the chest and abdomen using the contrast solution. Gave us more info about the lung problem, and identified the gynaecological problem.

Hi, Stephanie ~ I'm so sorry about your Mother's re-dx. The good news is, it sounds like she falls into a very interesting diagnostic category -- something called oligometastatic disease, which means her mets is very limited. In most cases, there is an excellent prognosis for this form of mets, meaning it can often be treated to get her back to NED for a very long time. You may want to search for the term oligometastatic bc both within the discussion area and in the main informational area of BCO. I'm sure you'll find many encouraging posts and information.

Good luck to you both, and do keep us posted on your Mother's tx. Hugs, Deanna

I dont know that there is a simple answer to this, but I'm throwing it out here.

Can liver mets pain come and go? I've been experiencing some discomfort on my right side for awhile now. It comes and goes and hadn't thought too much of it. Sometimes it hurts when I sit a certain way. Other times it just comes out of nowhere and lasts for awhile and then lets up. It's not terrible pain but its uncomfortable if that makes sense.

So can liver pain come and go?

Tangandchris, I agree with Deanna that there is probably a non-cancer explanation such as gallbladder trouble. However, do be on the safe side and talk to your PCP or Onc who may order an ultrasound to start with. My own experience was that the liver pain did come and go for some months before I was diagnosed. My liver enzymes were in normal range and my liver was not failing, yet I did have significant mets. Not to scare you, but to encourage you to follow up.

Hi, I am starting my annual diagnostic oncology/surgeon checks. I have had pain for 18 months on my affected (reconstructed) side and immediately sought out an appt to follow up when the pain started in the spring of 2016. I was told to take ibuprofen for 10 days and to call back if the pain persisted, which it did. I had an ultrasound as next steps. Nothing abnormal showed. The pain continued so I called my reconstruction surgeon's office as well as my mastectomy surgeon. My mastectomy surgeon recommended occupational therapy and chiropractic care. I returned to surgeon in the fall (2016) with the same problem and was referred to the pain clinic. At that time I had a br MRI as well. All normal. At the pain clinic I had 3 nerve blocks and 3 months later a nerve ablation. The ablation helped some but not for very long. This spring I started with the chiropractor again getting a little relief for a few days. I was also having hip pain at this point which I attributed to the aromatase inhibitor I was taking ( I have joint and muscle discomfort all over since starting the AI). Fast forward to now. The pain is worse so surgeon ordered mri which showed a broken rib in close proximity to where my tumor was in 2013. He has recommended a PET scan but needs to coordinate with my oncologist. I am very concerned. I have 2 lab values that are out of range, alk phophotase (low) and a/g ratio (high). Now it is a waiting game for the two doctors to consult and decide what tests to run. Has anyone had this experience or words of wisdom. Totally feeling deflated and scared. Thanks in advance.

Georgie, it may be that you have bone mets if you broke a rib without actually doing something to it like falling.  But there are many women who have bone mets that have been around for a long time.  The two tests you mention are liver function tests, but unless you're really out of range and it's likely other liver function tests would also be out of range, I really wouldn't worry about it.  

My mom, who is now 83, was diagnosed with breast cancer 17 1/2 years ago. Last September after having pain in her back that wouldn't go away, the doctor gave her a PET scan which showed she had bone mets/Stage IV. The cancer is only in her bones but it is in many places. The oncologist put her on a drug regime of Femara and Xigiva for six months but found the Femara was not effective. Also, she had many treatments of radiation for pain.

Since the Femara was not effective, she is now on Embrace and Flaxocil. With the Ebrance she has gone from 250mg to 75mg because it made her too tired and wiped out her white and red blood count. Initially, for the first two months, she was handling it okay.. But now the issue is -- she is tired, weak, sits in the house most of the day and sleeps. When I hear her voice on the phone, because I live away from her, it is so weak. On top of that, she needs to be on oxycodin for pain and takes them three times a day. I'm not sure if the drugs are making her better or worse and I'm not sure what to do or who to ask. The doctor said that he felt the drugs were effective because her recent bone scan showed that there was no new growth - so that was good, but her overall quality of life has gone way down in the past two months. If the cancer has not spread and is the same, why is she suddenly so weak? Does anyone have any suggestions or advice? Thank you

Mom_sweetangel, I'm guessing that you mean your mom is on Faslodex and Ibrance. (These drugs have such strange names.) She could ask about dropping the Ibrance and staying on just Faslodex. Ibrance is a targeted therapy intended to extend the time that an anti-estrogen, Faslodex in this case, works. But Faslodex alone is a valid treatment and some women do well for years on it. According to my oncologist, Faslodex has the fewest side effects of the usual anti-estrogens. Ibrance, on the other hand, is known to cause significant fatigue for many people. Oxycodone can cause sleepiness. So they need to figure out what is likely causing your mom to feel so poorly.

I hope your mom knows that she should talk to her oncologist about how she is feeling. Besides discussing treatment choice with her oncologist, your mom might ask to speak with a palliative care specialist in order to find the best ways to treat her pain and tiredness. Also, if she thinks depression is playing any part in this, she could talk to the social worker or psychologist at her cancer center. And finally she could see someone who specializes in geriatric oncology; that is, in meeting the special needs of older patients on cancer treatment. For example, in older people, drugs can behave differently and there may be health issues other than cancer. You can probably help long-distance by looking up what resources she has and what specialists are available to her. A nurse navigator at the hospital or insurance company might also help.

Thank you for taking the time to respond to my email. I appreciate it.