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

Update - after one week and one day of pure stress - just got the call that all my lab results and tumor markers were "fine". I had to ask - over and over - to make sure I heard her right - but - she said they are all "Ok"!!

Now just need to wait for the bone scan in July (that was already planned - but - glad I get a *break* from worrying at the moment!!!)

Still shaky from the phone call and was crying afterwards - everyone in the office thought I just got bad news!! I guess it will take awhile for it to sink in - that my news was good!

Thanks Everyone for ALL the support on here - it has been a nerve wrecking 8 days!!!!

Hi everyone,

Sorry if this has already been covered but my question is: How bad is the pain from stage 4. I guess it depends where is spreads to? How do you manage your pain and would you say it is effective?

Thanks

jadisin, you will probably get different answers from different women who are stage iv. I have been living with the disease for 6+ years. I have joint ache from the meds, but it is not debilitating. When I am sittng, I most often feel comfortable. When I walk, it is not with the bounce in my step I had before bc. I mentally push past the discomfort and I have learned to pace myself, and simplfy my life to make things easier on myself.

Jadison, the answer changes depending as you said on where mets are. Drugs we take can affect us, also if we are getting chemo.

I do not have any pain from the cancer. My cancer has not ever caused me pain, even when it moved to my brain. It will be different for all of us.

Generally, if there is a new unexplained pain that is intense or even a minor one, if it does go away after 2 weeks, it should be followed up with your onc or doctor. Good luck. Obviously if it is intense, that should be followed up sooner.

Hi ladies, bone scan clear, just some arthritis in my neck and knees. MO will repeat TM's in 1 month, if still elevating I'll have a PET. Going to try hard not to think about it. Thanks all for your support!

You're welcome, QuinnCat. Without your stats, it's a little hard for me to know what is relevant to you. Bisphosphonates are given to try and prevent or treat osteoporosis. Since anti-estrogen therapies increase the risk of osteoporosis (except tamoxifen in premenopausal women), breast cancer patients often take such a drug. A few years ago there were some studies with the bisphosphonate zoledronic acid (Zometa) that indicated a possible benefit in preventing bone mets. The idea is that a healthy bone microenvironment is less fertile soil for bone mets. There are some problems with these drugs, such as a small number of women who get osteonecrosis of the jaw or weird fractures of the femur. Ask your onc for the latest news on this, and the risks and benefits for you in particular.

I fell on the wrong side of the statistics. Most people with my stats will remain cancer-free. My first onc in 2011 and 2012 did a baseline bone scan (clear) and regular tumor markers (normal). I did not have a PET scan until I had upper right quadrant abdominal pain in 2014. ITC means isolated tumor cells in the sentinel node. All the oncs said this did not matter, especially as I had whole breast radiation and systemic therapy. I tested negative for BRCA and other bc genes.

question: Dx was Stage IIIC surgery LMX Dec 9, 12 positive nodes. Spoke to MO in Dec discussed Chemo-she ordered CT, Echo and Port. Short version: she never started me on chemo as of today, had a PET and the RO has basically stepped up and taken control. Now because of PET MO says stage IV so only put me on arimidex. Due to the actions of the MO and seeing my BS and RO, they think I should have had Chemo because of nodes. Second Opinion with a new MO on Monday. Is it too late to do chemo or do I just assume MO knows that arimidex is going to kill the cancer based on surgeon knowing he did not get clear margins?

Hi

It is 6 years since I posted. I developed pain in my lymphedema arm which then led onto a DVT in my neck whilst on my 6th year of Tamoxifen. A CT scan now shows a 29mm shadow behind breast or lung, they do t know yet. I am in total shock and praying it is bad chest infection from Jan. So I now have to wait for their advice on when to stop blood thinners in order to do a CT guided biopsy. I can't see any hope right now. Any thoughts most welcome.

jackboo, my advice is to be proactive. If you haven't heard when to stop the blood thinners, get on the phone and be persistent in getting answers. Don't let the doctors drag everything out. Get the ct guided biopsy as soon as possible, once you are okayed for it. I had to learn to be assertive to get medical appointments sooner rather than later.

It is hard to say what the scan is showing now. I have no experience with that. If you can, try to stay busy doing things that take your mind off of the upcoming biopsy. Do things that you really like. Spoil yourself, even. Turn down stuff you just don't want to do. Get out in nature. Take some walks. Write your thoughts down everyday in a notebook or journal, three pages a day. Take some deep breaths. Best wishes. I hope for all good things for you.

Hi Chrissyb

I am very grateful for your reply. I remember now the strength I got from this forum years ago. To log on and see replies is heartwarming.

Yes I had 3 weeks of rads. I wish it could be anything other than a cancer but it's highly suspicious and could be the cause of this DVT.

I face a long wait until they feel it's safe for biopsy.

Best wishes to you and thank you.

hi again

It is difficult to deal with this over a weekend somehow. I was also given false reassurance by the team dealing with the clot. They ordered the CT and told me it was all clear. Unbeknown to me they then passed it to the BC team who had a multidisciplinary meeting last Wed and discussed this " shadow". This has made the shock worse. I know I can't change this but I am not coping. I have hardly slept and feel sick at the thought of resuming treatment. I also can't seem to find many ladies with a reoccurrence in either lungs or behind breast? Perhaps I should try and get some anti anxiety meds

Chrissyb> even with 12 positive nodes? BS is concerned that no chemo was offered because I was stage 3C after SX. Had she started me on chemo in a timely fashion based on that information then it turned to IV after pet, what would have been her choice? To stop all chemo? Just trying to wrap my head around this.