Thanks for all of your comments about stats. My doctor told me not to go on the internet. The way she talked the stats are certainly not accurate and they are developing new drugs all the time. I am starting to deal better with my anxiety as I feel healthier and hope not to go on an antidepressant. I tried one Cipralax and it made me dreadfully sick. I tried it 3 times for a day each time and gave up. Vomiting, cramping and feeling like I was a zombie. Do any of you find them helpful? What are you on?
Also, I m in Ontario and cannot find a MBC group to join. They lump us in with the first time breast cancer people and I fear that must scare them. How do they do it in your home areas? That is why I find SHARE so helpful.
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rubyc1234
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I'm sorry to hear of your diagnosis and want to offer you support. We are all in the same boat and are here to help each other. SHARE also has a toll-free telephone support group, and I believe that Canadians can phone in free of charge as well. I facilitated the group for a few years and believe that a Canadian woman used to phone in. Check it out on SHARE's website. If you are still unsure that the call will be free, contact SHARE by email. Support is very important.
In this day and age, it's hard to stay off the Internet for information about breast cancer. However, there's excellent information out there. Try Metastatic Trial Talk: metastatictrialtalk.org You can subscribe. This is a brand new off-shoot of Metastatic Trial Search. Both sites are dedicated to metastatic breast cancer (MBC) and are highly regarded.
For reliable information, there's also Metastatic Breast Cancer Network. Living Beyond Breast Cancer has an excellent MBC conference in the Spring and offers travel scholarships to cover airfare/train and hotel.
As to statistics. Yes, they can be grim. But each of us is an individual, and while one person may not respond well to a drug, another may do very well. I've been living with MBC for 11 years and had lung and brain mets. I have been an advocate since 2010.
I used local procedures to remove solitary lung mets. That was surgery the first time and radiofrequency ablation (RFA) the second time (a year later), along with systemic therapy. There is some evidence that local procedures work along with systemic treatments, and right now there's a trial at University of Chicago for MBC, using radiation for oligometastatic disease (or limited metastatic spread).
There's also a trail in Canada for metastatic disease (SABRE-COMET). The trail is active but not recruiting, meaning that the investigators have recruited the total number of enrollees that they needed to run the trial:
I am only 3 months into the Xeloda and I am remarkably better but there is a large mass (3 cm) on the right side which gives me some pain. The left side feels almost normal. I see the oncologist on Friday and want to know whether the Xeloda will continue to work on this. Scans next week so I guess we shall see what is going on.
Interesting comments. My oncologist said the same to me. I was told the NCI . org site and I followed the Susan B Koman site as well. However, the support sites like this one is most encouraging. I found the group I went to recommended by oncologist was not for me as it had mostly second time around cancer patients that had been "back from cured". Not what I wanted to hear at that time. I was never told I was cured at all. I did 16 weeks of chemo, then followed by radiation, one month of Tamoxifen which made me sicker than I wanted to be so I gave it up and opted to "watch" my tumor markers and if there was any significant rise, I would go on an aromatase inhibitor. Four years later my MBC is now bone cancer stage 4. My own fault? I think not as the bloodwork never showed cancer and the CT scans never showed it either. However the tumor marker numbers remained high even after treatments. I was told no more radiation ever again by MD Anderson clinic. The markers started to rise so I am now on Ibrance and Letrozol and they are dropping again. I see what normal is on the test results but I have never even been close to those numbers. Thanks for your input, too. I think this is so helpful. The doctors do not have all the answers. Ibrance is still in clinical studies, but is a targeted therapy for our type of MBC.
It's clearly not your fault! I'm not sure whether it's only a female thing, but we tend to blame ourselves, wondering what we did wrong.
Thanks for your thoughts about the NCI and Komen. Komen has been ramping up with MBC conferences throughout the country. Forgot to mention that before! The conferences are conducted through local Komen chapters. Offhand they are Puget Sound, Houston, NYC, Minneapolis? Chicago? And I believe others.
A drawback of radiation is that it has an upper limit, unlike RFA procedures. But it can potentially be more effective.
Thank you Joan. Radiation in seven spots for me and I was told no more allowed. I did have RF ablation on 3 veins in each leg, but was not told if related to cancer or not. This was a few months ago. I went to a heart specialist (all good), then a vein specialist for the ultrasounds because of feet and leg adema (swelling). That's what was found, I have six ablations total, one a week and finished that up the last week of October. No it is not a fault and I think you are right it must be a female thing in thinking there must have been something we could have done better to prevent it.
Hey Rubyc, I have Mets to rt lung too. I have lots of lesions, nodules and plural effusion. I took 6 months of Doxil and tried Ibrance and Verzenio. My wbc went to low so I now take Faslodex to give my body a little built up time. So far I have gained all my weight back I lost with chemo and feel better. I’m not tired anymore. I can get out of breath if I run around to much so I try to take my time. May I ask is in both lungs? Mine came back after almost 18 years, which I had a reduction and in a year it came back. I found out last summer. I also have 3 spots on spine. I’m glad you found us here.
WEll that is encouraging to me. Yes, in both lungs with mets to ribs. I was floored to hear it was also in ribs but they really do not bother me too much. I notice a bit of soreness when opening heavy doors. Mine came back after 14 years. I started with clearing my throat and swallowing all the time and in a few months the cough came. So, I am on oral chemo. Don't you wonder what factors make us so different for treatment.
Yes, I think it depends on what type we have. I’m Her2 Negative. That was from my lung biopsy. Do you have difficulty breathing? Mine started with sob and a cough, but I was diagnosed with pneumonia, so thought it was that. I’m a R.N. so I suggested a cat and that’s where the nodules and effusion showed up. I’m glad your ribs didn’t hurt! Are you positive or negative? Last scan showed stable, but my 27.29 stays high at 400, however it was 817. So a year in and I feel better now. The Faslodex is like a chemo but tolerated very well. No hair loss, nauseous or weakness. I’m sure I will have to go back on targed therapy but for now I’m just trying to go about life as it was.
I am HR positive, the most common type. Glad to hear that a year in and you are feeling good. I have been wondering how long it will take until I feel I can do normal everyday things. I have started cooking and driving again but spent an hour in the mall yesterday and started to get lung pain which was not good. Today had a massage and osteo as my daughter is a Massage Therapist and Osteopath. That helped hugely. I have to pace myself but in 3 months much improved. My oncologist said she is "returning me to a high quality of life" which is encouraging. By the way I am an old RN. Retired now at age 65. I taught high school for the last 12 years of my working life as I tired of the shift work and did eventually go to teacher's college..
It seems Nurses get breast cancer a lot.One lady said she worked nights like I did for 25 years. I worked with my first diagnoses and radiation. There’s no way I could do it now, getting to old, plus lung involvement. I hope you start feeling better. Remember I’m only taking Faslodex which is easy.
Yes, I always worked 3-11. I’m not working now but worked when first diagnosed 17 years ago, just couldn’t wear bra with radiation. I think it has to do with the abnormal eating and sleeping habits when working nights. How are you doing?
Still vertical! Go to oncologist next week...praying my ca 27.29 has gone down! Of course it will be another week before I get those numbers back. The numbers just keep going up on anastrozole...probably time for a change in meds. Nothing is seen on ct’s and bone scans which I have had three so far. Wishing I could just get a PET! My insurance sucks big time!
Yeah that pet showed everything, even my mouth. What is your 27.29 showing? Mine was 817 last summer, now 400, remember there not always reliable. One lady on here had normal markers but cancer was in spine and I think liver, so don’t put to much in scans. My pet showed mets to rt breast but just scar tissue. Pets show so much but sometimes false reading as with many tests. Biopsy seems to be the most reliable findings. My pet was 500 up front, and insurance paid rest. Cats can be as good and without all that glucose and radiation.
I know about the people with normal markers that have mets...my 27.29 has gone from 29 to 38 to 45 to 52. So showing a progressive increase over the past year. My Ki was low so a slower growing cancer which would be consistent with the slow rising of the tm’s. I’m just a sitting duck waiting to see where these mets are!
Yes. I had a 1 cm lung met (my first met) that was removed surgically. A year later, another 1 cm met appeared in the same area, which was ablated with RFA. That's burning the tumor with radiofrequency waves (even though the procedure is done by an interventional radiologist, it's not radiation). The cutoff point for RFA is roughly 3 cm.
Sometimes, a patient could have multiple lung mets and a systemic treatment causes several of them to disappear, with perhaps a few stubborn mets left behind. Those could potentially be treated individually with radiation or an interventional radiology (IR) procedure as well. (IR procedures also include microwave ablation, cryoablation (freezing the tumor, but I think that's not done in the lung), and nanoelectroporation, which is basically electrocuting the tumor.)
Recently, research by Dr. Sylvia Formenti, who is basically a breast radiation oncologist, has shown that radiation to metastases when combined with immunotherapy could cause a tumor to act as a vaccine, with an effect that goes beyond the individual tumor. Here is a less than 3-min. video of her discussing this:
Thanks so much. I have been so reluctatnt to ask questions about my lung mets fearing that I would hear something dire. I am learning through SHARE that it is treatable and it is helping me to get some peace with this thing. SHARE has been the best thing ever for me.
I live in the UK and there no mbc groups here..just for breast cancer in general..I therefore find this group is brilliant and I check in most days for some reassurance or information
I take amitriptyline at night..tiny dose of 10 mg and it helps me sleep and not worry too much..I can’t cope with feeling zombie like especially when I want to do stuff
I have been sleeping well from the start. I take Melatonin which my oncologist said was alright (even though the pharmacy department was not so keen) and top it up with 0.5 mg Ativan.
Hi Ruby,
Thank you for sharing your experience! You are certainly not alone.
I live in the UK, and I have not come across any groups specific to metastatic breast cancer either. I actually prefer not to join the ones where ladies have early stage breast cancer, as I do not feel that I can relate to their situation, just as they probably can't relate to mine. I felt the same as you when I was diagnosed, scared about the idea of a "death sentence", but I have discovered that our condition is treated more as a chronic health condition, just as diabetes, epilepsy and other illnesses are, which cannot be cured.
My oncologist actually used the word "chronic" right from the start and that made me think. I found it reassuring that I would still be able to carry on with my life in many respects. In fact, my oncologist encourages me to keep working, and to lead a relatively normal life. She is right, because what is the alternative? I don't really want to think about it! I believe it's important to still try to maintain a good quality of life, which is why I am always trying to do the best I can to get answers, and to lead a healthy lifestyle. If you feel you need anti-depressants to help you cope, then I would suggest talking to your oncologist, GP or oncology nurses and taking it from there.
Thanks so much for this. I am Canadian and it is good to hear from others elsewhere in the world. I wish we could all meet physically. Yes, I think we are a different group than the early stage people which is why this chatting is beneficial for me. I am trying to avoid antidepressants. Some days are better than others for me. I am still experiencing some physical issues with my lungs, although much better, and certainly when feeling well I am more optimistic. I so much fear that tomorrow it will be in other organs and then what! But, as I read and hear from others it seems they can deal with that too. I just want to get my head to be ok with this idea that is can be long term and a chronic condition, as you say. I am told it will get easier. Not sure about that.
I felt just like that as a "newbie" and after having been through the chemo and radiation I can look back and say that chemo changed me. I was short tempered and had the brain fog and lost my hair, etc. That was in 2014, a year that is a blur to me. Months later I can see that it changed me and I needed to make amends to my friends and family. It helped me with a healing process. I take things a day at a time. I have to because you never know what the oncologist will spring on you., I am never depressed and I love to read that some of us have gone on to live many years after treatment even those of us who have MBC. I am thankful for that and even though Ibrance makes me tired about the 15 th day into a cycle, I do not take naps because I don't want to fall into a schedule where I sleep and miss out on life. I wish you well and keep the faith.
You're welcome, Ruby. It would be great to meet! My local Macmillan centre at the hospital where I am being treated is holding an open day for cancer patients next month with talks and lunch laid on. There was one right after I was diagnosed and I was not ready to go along and meet others or talk about my disease, so I didn't go. But I am considering going this time because I am interested in learning more about what I can do to improve my health.
It is natural to have ups and down. I do too and I am sure others feel the same! Some days I feel really chirpy and am getting on with life, and others I feel more down. But I try to keep the "down days" to a minimum because then I will start to suffer physically. Staying positive and active translates into better physical health for me too. If I have a symptom or a problem, I will try to find an answer to it by talking to one of my oncology nurses, my GP, my oncologist or by asking on here.
In terms of getting your head around your diagnosis, I know what you mean. I don't know about you, but my initial diagnosis went something like this: it's early stage and can be treated and cured. Fast forward a few weeks after all the MRIs, CT scans, and biopsies and everything had changed to now it's metastatic and can be treated, but not cured. I was devastated, but hopeful, thanks to my oncologist who focused on the positives.
I hope you have a kind, sympathetic oncologist who is positive and does their best to keep your spirits up. It is a lot to get used to, especially if, like me, you were in perfect health until you were diagnosed. But I would also suggest being your own advocate, and doing the very best you can to stay healthy. Let your medical team know if you are not feeling well, if a new symptom comes up, or you need some reassurance.
I havent taken any antianxity meds, I meditate and do yoga, I think that helps me a lot. I know anyones anxiety is not like anyone elses, so of corse we all have to find our own way. My very best to you on your journey!
Hi runyc1234, I am from Ontario also and find this group has helped me so much. I was diagnosed feb 2018 and have been getting so much strength and hope here. Hard to find any groups here at home who truly understand what we are going through. If you find any please let me know. hope all is well with you and everyone who is affected by MBC. Stay strong we can live a long time with this, many have done so. we can’t forget this, this will keep us going, having hope.
My first xray indicating mets was Feb 20th and by March 2nd the CT Scan confirmed this. It then took until May 31st to complete the scans and lung biopsy and bronchoscopy and to see the thoracic surgeon, and radiation oncologist. I felt myself getting worse and was sure I was dying. Mind you both those doctors told me I had many years to live but how could I believe this when I was feeling worse. Finally I saw the medical oncologist and started treatment. I was in bed with a lot of lung pain during the 3 months of diagnostics and the lesions grew but my oncologist was not worried. She said the drug would shrink things. During those 3 months the only way I was comfortable was to be in bed. Started treatment May 31st with oral chemo and I have dramatically improved in under 3 months. Not perfect as I cannot over exert myself or the right lung gets tight Scans next week. What are you on?
That is great news that you have improved. You must have been so worried. I know I was and I felt myself getting worse and worse and felt like I was dying everyday that I was waiting. It’s great that your dr Gave you hope, generally they don’t say much, mine sure doesn’t. Went to dr in Jan, by the time I did all my scans, biopsy’s etc it was end of march. Started on Ibrance and Letrozole. Have been on it for 5 cycles and feel a lot better. What oral chemo did they treat you with this time?
Pleases try L- theanine to help with depression. You will not feel odd, sick or anything negative that often goes along with antidepressant drugs. And Slone Kettering states that research states cancer patients have a longer life span when using it.
Gosh just reading all that you all have to say is like a breath of fresh air. Good too to hear from folks in other parts of the world. I am in South Africa and, though we used to have one of the most respected medical care in the world things have slowed down a lot over the past years - sad. We do not seem to have much exposure to trials and often new treatments are either too expensive for our medical schemes to consider (exchange rates are pretty poor much of the time) or new drugs (like Ibrance) are here but only in the section 21 list i.e. they are still being considered by our answer to the USA FDA! Nevertheless I do have a nice oncologist who currently has me on no treatment at all after various failures because she says I am not symptomatic (other than scans or blood work) so therefore she is not prepared to tamper with my current quality of life by introducing full on chemo - which, it seems, is the only option currently available to me now. I appreciate that not everyone agrees with this idea but to me, at 73, it makes sense. I do get a little tired some days but nothing like what I am told chemo does to one! I have a liver met which was stable for ages then started to grow slowly over the past year or so and Faslodex, Xeloda and navelbine have all failed to contain it.
So for all a number of people say "don't use the net - you will frighten yourself to death" I find this group a wonderful support.
Wow! South Africa. Interesting to hear from women all over the world. This is a good group for finding support. It has uplifted me. I am encouraged to hear that things can be stable for long time periods. The experiences shared are assuring me that they can keep this MBC under control.
I totally respect and understand your decisions to have quality of life. When I was diagnosed last summer I said no chemo because I saw what it did to my Mom. That was 1990, and my oncologist told me things have changed. I took 6 months of Doxil. I got better as time went on. The targeted therapy was harder for me than chemo. I’m only taking Faslodex because of my wbc. I’m so much enjoying not being so tired and sick. I will pray that you continue to do well. Keep me posted on how you feel and are doing! Good luck!!
There is a group called Metavisor. You can find them online. They can give you some help in setting up a group for Stage IV. I'm working on it now here in Maine but so far not much luck.
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hope all is well with you and everyone who is affected by MBC. Stay strong we can live a long time with this, many have done so. 
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Hi everyone.. here for some support.
