If you are not Stage IV but have questions, you may post here
Comments
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Jen1, can be anything. They found my mets when I broke my back. Surprise! Though in retrospect maybe it shouldn't have been such a surprise. I'd complained of back pain for a while but everyone thought it was disc problems, or something else.
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These last few post are what makes me so anxious still as I approach my oncology check up next month, almost three years from diagnosis of Grade 3, Stage 1, HER2+, IDC.
I had a strong dose of THC (chemo and herceptin) over four months (for chemo), and a year for Herceptin and also underwent a BMX because I had a high risk of reoccurence or new cancer in my non-cancer breast.
I also have a gene mutation linked to Breast and other cancers (NBN) mutation and a really extensive maternal family history of breast and colon cancer.
I have never been given a full CT or PET scan. I have been told just let them know if I have any symptoms that persist more than three weeks, such as cough, or bone pain. I also developed some auto-immune conditions post treatment and developed fibromyalgia and osteoarthritis post-treatment. I feel like I constantly have pain in places throughout my body.
I get the risk of high dose radiation from these test but also feel like I would love to KNOW that I am cancer free which I feel like only one of these test could confirm.
My Mom had two different breast cancers and three other cancers (not metasticis) before she eventually had sarcoma that did metastasize and become fatal. Both her sisters had secondary cancers to Breast and 1 cousin died of breast, another of colon and a third has so far survived colon cancer. My sister just had prophylactic mastectomies because she also tested positive for the NBN mutation and even though her mammogram and MRI showed no cancer when they biopsied her Breast tissue she had DCIS.
I don't know if the risk of the CT is greater than the stress I live with if not feeling I know whether or not I am cancer free. I want to talk more with my onc about this so any advice is appreciated.
Take care,
Julieho
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Thank you ladies so much for caring. I appreciate you all. Thank you for takin the time for responding to me.I will keep you all posted.
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jen1 - you can be worried, but the one thing you shouldn't be is a compliant patient. One of the many lessons I've learned since my stage IV dx, is that you have to be proactive in your care. Before being diagnosed, I had enough concerns to address them with my primary care physician, who didn't take my concerns seriously. She wasn't going to order the chest x-ray i requested. I stuck with the request, repeatedly asking , what could it hurt? She eventually caved and ordered it, and guess what? It was lung mets. (the clue factor for me was shoulder pain and horner's syndrome). There have been numerous other times that if I hadn't spoken up, things would have been missed or not done. Don't sit back and wait for a dr. to take you seriously if you have concerns. Stick with it and be the squeaky wheel. I'm not obnoxious, or rude, or disrespectful, but I am persistent. We have to be. They have lots of patients to take care of. Don't allow yourself to be one who falls through the cracks because you don't speak up. Best wishes and keeping my fingers crossed for you.
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I was diagnosed December 2013 with ER+ PR- her2+ bc and had a lumpectomy, have completed my TCH treatment (Herceptin ended end of January 2015), 33 treatments of radiation ended July 11 (7/11 lucky?), and will be on Arimedex for the next 5 to 10 years. I am worried about the her2 factor and would love to hear from someone who has survived for more than 4 or 5 years. I am now considered a 14 month survivor and I could use a bit of reassurance.
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Hi Realtor, my diagnosis is the same as yours and I was 5 years out last November. I will complete 5 years on Arimidex in June and we'll see where we go from there. My oncologist says most recurrences for her2 positive is in the first 3 years, so I hope I can stop the Arimidex after 5 years. My MO and I will talk about me having the BCI test done at that time to see if it gives us a clearer idea of what my chances are for later recurrence (year 5-10l). Congrats on finishing treatment, seems like the are are lots of us her2+ gals doing well now thanks to herceptin!
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First time poster to this thread.
I was curious about those who have progressed from an early stage (with no lymph node involvement) to Stage 4.
Is there anything you would have done differently between the time you were initially diagnosed with early stage BC to the time you were told it had progressed to Stage 4?
Essentially, things you had control over and could have changed, but didn't.
For example: Diet, exercise, stress, non-conventional treatments, smoking, alcohol, cannabis, spiritual things, prayer/religion, education, etc.
Free free to PM me, if warranted.
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ditto RE: last post from John. Just saw MO. One round of chemo to go. Have cut out inflammatory foods except for chocolate, am exercising, cutting back on stressful projects and work.... Do I really need to buy organic food, toss out my body lotion with parabens, eliminate foods with tiny bits of soy. Will going OCD on this add stress that will cancel out the benefit? I know it's a crap shoot but would like to find a way to try to prioritize what to change. Always, maybe, never do this? Thanks so much.
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So sorry you have to find yourselves here. I'm sure others will chime in, too.
While I agree with my onc that chemo probably wasn't warranted ( I had intermediate oncotype- 18) at the time, it might have been a good idea, and may have knocked out the cancer initially, as it was in my blood. I'll never know. He didn't think it was worth the side effects in my case, so he started me on Femara. Even the side effects from that seemed too severe to me at the time, so he switched me to Aromasin. In retrospect, I might have done better had I stayed on the stronger drug, if not chemo. What I do know is that I wasn't perfect about taking my Aromasin, either. I forgot sometimes and didn't realize what effective meds the AIs really are. If I could go back in time, I'd be much more diligent and would probably stay with the stronger drug.
I did exercise a lot-- 5-6 mile walks with my lab most days. I hiked to the bottom of the Grand Canyon with a 35 pound pack. I worked out with a trainer. In fact, what brought me to the doctor to discover my bone mets was a broken vertebra caused by an exercise I shouldn't have been doing. I basically broke my back while using one of those exercise rollers during a workout with my trainer, as the cancer had weakened my spine.
As for eating, I've always been good. Never smoked and rarely drank alcohol and don't eat a lot of red meat. I love making veggie smoothies and for a a year before my mets I was using something called "Green Vibrance" in my smoothies to make sure I got all the nutrients I needed. Actually, this is not something my oncologist would have liked, as he always said that real food with the natural amounts of vitamins that food provides is the way to go. Overdoing it can get your body out of whack. He actually told me not to take a multivitamin! I didn't listen.
The other thing he suggested a couple of times, and I refused, was to use a bisphosphonate to strengthen my bones. I had read so many horror stories about them that I thought they would do me more harm than good. Remember, I was thinking "I'm done," so the fact that they have shown to prevent bone recurrence didn't sway me. I only had a little osteoporosis, and I wanted to fix it through exercise and diet, not risk the known side effects of strong drugs. I took an over the counter bone formula with strontium, and that actually did help my osteo, but not my cancer. I should have taken the stupid drug and my bones probably wouldn't have been so severely messed up when/if the cancer did hit the bones. I've now taken 2 years of Xgeva, and it's helped heal my bones.
So, I guess I would say I wished I had taken my diagnosis a bit more seriously and hadn't bought into the "you caught it early so you'll be fine," mantra. I worry and wince when I read early stage ladies giving up on Tamox or an AI before even trying because they don't like taking things that can harm your body. I understand some women are more sensitive than others and the side effects can be tough, but at least try it. It often gets better with time. People need to hear that for 30% of women with early stage cancer, it will return.
One thing I would suggest to all early stagers is to insist on a follow-up scan- bone and CT or PET,- two years out from your surgery, and then 5 years out. It's not standard of care, but insist anyway. In my case, the cancer cells were in the blood and couldn't be seen on a scan at first, but two years out it would have shown up. Had I done that, I would have caught my mets at an earlier stage and may even have been able to get to NED with rads. And I wouldn't have been doing exercises that really weren't safe for me to do. Beg for some kind of scan, and be conscious of any back aches or bone issues and don't dismiss them.
I don't believe that this disease can be stopped with natural therapies alone. I think getting a good, moderate but not overly ambitious amount of exercise can help both physically and mentally, and eating a lot of fresh fruits and vegetables along with low fat protein diet with moderate to low (empty) carbs is the way to go. I now only take a few pills- calcium, vitamin D3, magnesium and Turkey Tail mushroom extract (my one salute to alternatives
. I think everyone needs to find a diet they are comfortable with that they feel good on and about, and not stress too much over it. There isn't one special thing that will keep you safe, in my opinion. Try to be healthy overall and listen to your body, find an oncologist you really trust, be diligent about your meds and get a follow-up scan after 2 years, or earlier if you have concerns. Good luck. 0 -
Wow, sandilee, Thank you for your story. I must have read other posts of yours here and there, but I am glad you showed up here and wrote what you did. I am struggling mightily with the A.I.'s, and now I am on an extended break from them. I do know how important they are, especially since I caught mine so late, and it probably was already in my blood and lymph system. I also have to take a short break from the prolia, because I do need to have some dental work done. So, I am a little scared, i have tried arimidex, and then tamoxifen, and then femara. Next, I am going to try aromasin, and hope the hurt goes away.. I havent taken anything for a month and onc okayed another five-six weeks off, and then I see him and we will talk. I am just getting really depressed about how much pain I am in, all the time. They can't find a thing wrong with me though. Got to be the meds. Likeyou, I try to eat well, and I do get plenty of exercise. Im doomed.
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No, Tomboy you're not doomed, although I know how you feel.
If Aromasin is too tough and before going off all anti-hormonals, talk to your doc about Faslodex. I've been on it for nearly four years and it has kept me stable, and even gotten rid of my skull mets. And no joint pain or other side effects! I may feel a bit tired the evening of my shots, but that's it. Most of the women who have tried Faslodex on this board have had good luck with the side effects. If it's effective for you, it's probably about the easiest drug to tolerate. Good luck with the Aromasin, though. I hope you find relief soon.
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Thanks, Sandilee, for responding. I wonder if they would even consider it for lllc? I will talk with him in early may, see what he thinks. I have only read a little about it, so I will read more, thanks. : )
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sandilee.
I appreciate your reply. Lucid, thorough and honest. I hope for more responses like yours.
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Hi everyone,
I feel kind of silly asking this but don't know who else to ask. For the past two days I have not been feeling well. Today I am super nauseous, dizzy and headaches, and stomach ache. It's the first time Ive felt this bad since I was doing chemo a year ago (it feels like when I was doing AC). How do you know it's just a flu bug or something and not a recurrence or something related to BC?
I hate that my mind goes there right away but I can't help it.
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Stephanie, the rule of thumb re. any aches, pain or unusual symptoms is 3 weeks. If after 3 weeks you are still experiencing whatever is going on, that would merit a call to your onc to determine if he/she wants to see you, because most things run their course and get better within that time frame.
I'm sorry you're not feeling well, and by all means seek medical attention right away if how you're feeling interferes with your ability to function. But try not to let your mind get any further ahead than the most probable cause, which sounds like it's most likely a flu bug. Another thought, given your symptoms... Could you have gotten food poisoning from something you ate? Deanna
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Thanks Deanna. You're absolutely right about the 3 week rule. I think I overreacted yesterday. Had a lot of stress recently and a build up of emotion. It's been about 18 months for my whole ordeal and I never broke down, it may just be everything coming to ahead. Ever since I finished treatments I've been full force trying to get pregnant (with a surrogate) and it hasn't worked yet. All my symptoms came on after our last failed cycle. Thinking it's stress…
Thanks for the feedback.
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Oh, I can so relate to stress -- which I feel had a huge role in my re-dx! And you're absolutely right about some of the stress of our original dx & tx often being buried for many weeks or months until something else precipitates an emotional crisis and it all comes spilling out!
I'm glad you're feeling better today, and I'm sorry about what you're going through. But have faith. I'm sure it will happen in God's time (or substitute whatever higher power you believe in), And in the mean time, do whatever you can to de-stress your life and try not to let it make you sick, which it absolutely can do. Big (((Hugs))), Deanna
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So, I'm back again with questions
I posted a couple of months back about shoulder pain that I've had for awhile. MO suggested that since a chest scan seemed clear that the pain was from inflammation that the scan did see. So she gave me some Celebrex and sent me on my way. The Celebrex was helping and when they followed up on the phone to see if the pain was improving, I said yes. But, now not so much...still have shoulder pain. Now, I'm having pain in my back. This pain literally feels like it is on my spine, it is a dull achy feeling that is fairly constant. My question is what does bone mets pain feel like? The shoulder pain is confusing because I can't tell if it is muscular or bone, it is actually my shoulder blade that hurts. But this back pain feels more like bone pain. Is there a difference in pain types? I'm not sure if I'm asking the right questions or not...forgive me if I don't make sense.
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I would like to hear the answer to that question.
I have been having this pain on my left femur. It only comes at night and sometime even tylenol does not help. It feels my the bone is on fire and other times feels like a stabbing pain. I also have a constant lower back pain (should go for a X-ray or something).
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tangandchris and Lolis... I think you will find a wide range of responses describing pain from bone mets because the pain can vary depending on which bone or nerves are involved. Plus everyone perceives pain a bit differently. In my case, the first pain I had was severe lower back pain that I chalked off to wearing boots after a summer of wearing nothing but flipflops. Then, after I learned I had extensive bone mets and before the Anastrozole I'm now on kicked in, the pain in my upper back and ribs was best described as aching and sometimes burning pain that begged for a heating pad and pressure (sitting with my back pressed against a chair) to relief the ache.
Also... shortly after I was dx'd w/mets, I started having a stabbing pain shoot up my right shin. It got progressively worse over 3 mos. until it finally reached a crisis point and I had no choice but to go to the ER where I found out I had fractures in my femur and pelvis -- neither of which had ever really hurt until that crisis point when I guess the fractures significantly worsened to the point I literally couldn't move without excruciating pain. But that wasn't mets pain, per se. It was fractured bones, which occasionally is the way mets presents -- with a fracture that may or may not be painful at first, and maybe gets chalked off to a work-out injury or other type of overexertion.
I hope and pray neither of you is dealing with mets, but a PET, CT or MRI (not an x-ray) might be a wise idea if your pain doesn't improve -- if only for the peace of mind of finding out it's hopefully not mets. (((Hugs))) Deanna
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Thank you Deanna for your response. The pain in my femur feels better if I apply heat and pressure on it.
I see my BS next week for my first mammo after the surgery and will mention this pain
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Lolis, one more thought... Are you or have you ever been on any type of bone strengthening drug? Those have sometimes been associated with femur fractures, especially with prolonged use. Also, if you had Neulasta or other white cell building drug while you were on chemo, I think they can occasionally cause lingering pain in the bone marrow for a few months. Deanna
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Hi Deanna,
I received Neulasta during chemo and had some bone pains and also I am on tamoxifen and had some pain in the first couple of months but it is not the same bone pain. I am going to ask for a scan for just in case.
Thanks again.
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Thanks for the response, I figured it was subjective but thought I'd ask anyway. I spoke with MO's nurse yesterday and she is going to likely get a scan set up for me. IDK how to get thru this after tx phase of things without wondering about every ache and pain! I feel like I'm overreacting half the time, but then again maybe not. I've also had a cough for a few weeks now, but so has by dd and it is likely allergies. BUT.....I can't help but wonder if that is why my back is hurting because something is going on with lungs??!! ugggg
How does one get thru this without being emotionally wiped out by it? I don't think it is possible
I'm so thankful for this forum though ((Hugs))
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Hi,
My friend was diagnosed with breast cancer last year, she is 36. It was also in 39 of her lymph nodes (i think) by the time she found the lump. She underwent chemo and has just finished her radiation too this week and is going on a chemo pill too soon and a pill to bring on menopause. However she has just been told that it has now spread to her ovaries. Does this mean it is metastatic and is Stage IV? She meets with her consultant tomorrow for the full story but I am driving myself mad researching and would love to hear your thoughts.
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Hi Sophistikatie. Yes, I think it does mean your friend has reached stage IV in her breast cancer diagnosis.
I'm just replying because you seem anxious to hear from someone on the boards. As I am not stage IV myself, I'm sure someone who is much more knowledgeable than me about Mets will reply to you soon. Keep your chin up and try not to worry too much meantime. I know how terrifying Mr. Google can be so try not to scare yourself with searching on line. This thread you've picked is a really good place for advice from those who have been through this diagnosis personally and I'm sure you will get great advice when the girls who come here often get a chance to dip into this topic.
The best of luck to you and your friend.
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Hi Sophisikatie, I'm so sorry that your friend has been dx with breast cancer. To answer you question, yes, as it has spread to her ovaries she is indeed stage IV. Cancer that has left the place of origin and settled some where else in the body is called metastatic disease but a lot of people refer to it as stage IV.
Please try not to think that this is a death sentence for your friend as there are many women living for many years with metastatic disease. I'm sure her doctors will have an appropriate treatment that will allow her to do this.
Feel free to ask questions here but there is a thread for friends and relative to get support as well.
Hoping your friend does well with her treatment.
Love n hugs. Chrissy
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Thanks so much for replying.
It looks like it has spread to her ovaries and they cant operate or do more chemo. Not sure why not. We are all just in shock now.
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Sophistikatie, I'm so sorry about your friend. Clearly, I don't know anything about her or her situation, but it does seem just a bit odd to me that she's being told nothing can be done, especially at her young age.
One thing I absolutely know is that not all doctors are equally qualified, nor do they all think alike when it comes to how to treat each of our individual situations. If she hasn't already, I would certainly encourage her to get a second opinion, preferably at a major comprehensive cancer center like those listed here -- assuming she's in the US:
http://www.cancer.gov/researchandfunding/extramura...
These are the institutions that see the most cancer, have the top cancer docs, and are on the leading edge when it comes to cancer research. I wouldn't personally accept that nothing can be done unless I heard it from multiple medical teams.
Good luck to her, and (((Hugs))) to you ~ Deanna
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They are starting her on some sort of hormone treatment but it seems they are only giving her a year or so. We are in Ireland so don't have the choice of those places unfortunately. Going to see her this evening so woll learn more but it doesn't look good at all. It's so aggressive. She only found the lump this time last year.
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