If you are not Stage IV but have questions, you may post here
Comments
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Shelmel, I know it will take you a bit if time to get your head around your dx but please understand that as bad as it sounds there is still a lot of life to be lived. Read all you need for as long as you need.
Love n hugs. Chrissy0 -
Thank you Scuttlers and Chrissy. I'm still in shock right now, I think. I don't really have any emotions and feel kind of detached from it. I've been reading the threads here and my heart breaks and then my heart bursts with joy at how much life you guys have.
I don't know when it's going to hit me, but when it does, I'm probably gonna be a mess... for a little while. Right now my focus is on reassuring other people (friends/family). I've gotta get through reassuring them before I can get to me. I did that with my original dx for breast cancer. I guess that's normal, huh?
I don't know what I would do without the boards here. When I went through my first breast cancer treatments, it was a God-send. I am sure this time around it's going to be even more of a God-send.
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Shelmel while trying to reassure your family and those close to you please don't bury what you are feeling. I know we all want to lessen the worry of others but in this case they have to learn to do that and cope with it the best way they can. This is all about you........don't feel guilty as you have enough to deal with.
Love n hugs. Chrissy0 -
Thank you, Chrissy. I'm waiting for the emotions to hit me but they just haven't yet. I'm extremely tired today, which I think has to do with the stress, but so far, I think I'm still in shock and am just not ready to put these words and the ramifications in my life yet.
Reading the boards has helped me though, so much. Thank you so very much for your kind words and support. I cannot express how much it means to me to have that right now.
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ShelMel, sorry to hear what you are going thru. From the sounds of what you are saying, it probably is mets. It may not all hit until you get that answer that gives you a definitive answer as to what is going on. There is good tx though for mets, be sure they get a good biopsy of the tumor to be sure they have the proper hormone & her2 status. Early in the dx so much happens that makes it really hard to digest what is actually happening. Just be sure to take care of you and let others worry how to deal with your dx. Right now you are most important!
madpeacock - I'm not sure I've ever heard of someone being dx with bone mets in an old fracture site. I know when they do a bone scan only they will ask you if you have had a fracture or they will note on the report that an old fracture site shows uptake but that is normal uptake and possibly related more so to arthritis. If you are concerned you could always request a PET scan. At least that would determine if it arthritis or something other than mets going on in the old fracture site.
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Thank you all for the responses to my bone question! I may decide sooner rather than later to get it checked out since I have met my insurance limits for the year and it wouldn't cost $$$, but I have such a high pain tolerance that my more likely path is to ignore it.
Wishing everyone peace, comfort, and joy through the holidays and into the New Year.
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Better to be safe than sorry If it doesn't cost anything i would go
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wrsmith2x,
I'm just getting back to bc.org after a mx Nov. 27, but my weight problems were so much like yours I'm responding, even if it is a little late.
I have also always struggled with my weight and had never gotten below 200 after my second son was born in 1981. I gained and lost the same 50 lbs., mostly on low carb diets which worked fine until my stomach was too upset to continue. Then I'd gain it all back over the next year or two with a few more for company. I had endometrial cancer in 2006, bladder cancer in 2007 and 2010 along with gall bladder surgery between the bladder cancer dx and surgery, but all I did was continue the yoyo, topping out at 287. Then in 2010 I had a breast "blob" I was assured (mammogram and ultrasound) was not cancer, two pleural effusions that I was assured were not cancer. I continued to have shortness of breath and decided it was finally time to try something new, so I started a walking program with my husband and a semi-vegetarian diet - vegetarian meals every other day, and reduced portions. I lost 25 lbs between August and November and then managed to stabilize for the holidays. By then it was clear that something was seriously wrong with my left breast (inverted nipple, weird shape) and an additional mammogram showed cancer. It was no surprise that the PET/CT showed activity in the left lung and a biopsy showed the breast cancer had metastasized there.
Now I got involved in an exercise and nutrition program at my cancer center in addition to the walking and followed up on a friend's recommendation to check out the Plant Programme, Jane Plant's response to her own breast cancer. I'm sure there are other good diets out there, but what they all seem to have in common is a plant based regimin with no red meat or processed foods, limited organic poultry and fish, and lots of fruits and vegetables. My diet totally eliminates dairy, pretty hard for a cheese lover, but some allow low-fat cheese. For me, it was easier to just avoid it entirely since I love it so much I'd find it hard to stop.
Since May 8, 2010 I have lost an additional 80 lbs. I've again been slowed down by Thanksgiving and surgery (my doctors finally decided that a mx might be useful), but I'm ready to hop back on the bandwagon, hoping to lose about a pound a week with diet and exercise. Six days after surgery I'm already having to remind myself to take it easy - I have very little pain and lots of energy.
Everyone is different, and my only medication for cancer has been anastrozole (arimidex). My side effects have been minimal, but my NP tells me that increasing exercise and improving diet probably helped with that. So my advice is not to think about diet and rapid weight loss, but to find support for exercise and diet that will change your lifestyle and gradually reduce your weight.
Janet
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chrissyb, thank you for starting this thread and thanks to all you stage IV sisters who are taking the time out from your own illness, pain, anxiety and discomfort to deal with us early stagers here.
I had a question of people with bone mets. If you have the mets in your pelvic area or upper leg, could you please describe how those mets felt before diagnosis? I realize that some mets are NOT felt, so my question is for people who did have pain. Here are some lead-in questions:
--Was the pain constant or only when you moved or walked?
--Was it sharp or deep?
--Did you think it was muscle pain at first?
I am asking because for months I have had pain in what feels like my right hip adductors. It started after I began to exercise the area, but it won't really disappear. It hurts when I walk too far or inadvertently bend my leg a certain way. But the pain is not constant. It is very sharp and sting-y when it happens. If I walk for a long time I begin to adjust my posture to protect that area, and so my knee starts to get bothered. I am not sure whether what I am experiencing is bone or muscle pain. Oh....and sometimes I feel a sort of reverberating very slight pain on the other side of my pelvis. My thought is that this is because I am adjusting my posture to control the pain and causing a misalignment.
Most likely I am making much ado out of nothing. But I am self pay at the moment, and before I start shelving out thousands on scans, I thought I'd seek input here. Thank you in advance!
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1Athena1
Hi, I can tell you how my were but as you know everyone's are different.
Mine started in my knee, with an ache that I thought was from the treadmill at the gym. I have had back pain before and my original mets was to my L3. I didn't think this was mets but I didn't have any pain from my back mets either so I had nothing to judge it by..
We were going to Europe in Oct and this was Sept. On my visit to onc before I went he asked about why I was limping. Told him my knee hurt from the gym. We agreed between us that I would have it looked at when I got back. My TMs were rising so I think he knew there was a chance it was mets.
The pain gradually left my knee and headed into my hip and over the month in Europe it got worse and I had to take painkillers most days in order to do all the walking up and down stairs. Europe has a lot of stairs by the way. Everything is either upstairs or in the basement of places. I did a lot of stretching and trying to move my hip joint as I had had back problems and sciatica for a long time. It didn't help and when I got back and they did a scan I had a tumour in my illiac joint. My pain if I can remember was constant and deep and didn't go away with normal painkillers.
In an aside the interesting thing was that as I was having rads to the right hip I slipped off the rads table and landed badly on my left hip trying to protect my right. Immediate pain and trouble walking and two days later they did another scan and found 3 small spots in my left hip. No pain at all and who knows how long that might have taken to show up.
The general rule is if pain has not changed or disappeared in 3-4 weeks and there is no clear reason for it then it is a good idea to get it checked out. Maybe if you have a physio you use you could get it looked at there first and see if they can improve things. If it's tumours that will make no difference but it might solve your problem if it's muscular.
All the best with this. In the end you have to decide for yourself if the worry is worth waiting or you are better off knowing what is and isn't going on.
Moira
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My friend has just been informed of her DX Stage IV with mets to bones and lungs. She is 4 years out from her DX, DCIS, tested positive for the BRAC gene. She had a BMX with recon and no further TX. She just told me that she's starting Tamoxifen immediatley and if in 3 months tome her TM's aren't down, they start chemo. I'm kind of blown away by this and how they're not starting with chemo? Does this sound reasonable?
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I was dx stage iv a year ago, been on Tamoxifen til last Monday when I did my first chemo. My bone mets and the huge tumor in my breast shrunk quite a bit with only the Tamoxifen treatment. It starves the cancer cells of the hormones they needs to grow and divide, hopefully killing some cells or at the least not letting it grow anymore.
At stage iv, it's to late to try to kill it all with chemo before it spreads. I think what they try to do now is keep it under control as long as possible. Chemo is a "big gun" saved until needed for most I believe. Someone please correct me if I'm wrong here. I'm still learning myself.
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Hi Myleftboob I'm so sorry that your friend has joined our ranks. Tamoxifen is a very powerful drug and if it works well for her then that is a good thing. As for not being bombarded with chemo as a first option, that is quite normal if you are ER/PR+.
Treatment for stage IV is a little different than standard first line in that we can no longer totally kill of the cancer just control it for as long as possible. So, starting with Tamoxifen or one of the AI's is standard for us. Start as gentle as possible for as long as possible and work into the big guns hopefully giving us many years.
Hope this has helped.
Love n hugs. Chrissy0 -
Thanks for the replies Chrissie and Stormy. I'm quite releived. I had no invasive component at least that we know of and did 4 cycles of TCH and am on tamoxifen so I kind of thought she would be immediatly starting chemo. Who knew, not me obviousley.
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I met with my oncologist today and had the wind taken out of my sails a little…
My CT last month showed a couple of anomalies; bone islands to the pelvic sacrum, both iliac bones and enlarged lymph nodes (lymphadenopathy) in in the upper middle area of the lungs near the heart. The report says the enlarged nodes are indeterminate for lymphoma or metastic disease and ‘likely due to sarcoidosis’.
So typical of me, I researched both bone islands and sarcoidosis and was not too worried but now my oncologist wants me to get a bone scan and meet with a pulmonary specialist to rule out mets…of course she says that she doesn't think they are mets but she just to be sure given my history. My last bone scan was July 2011 and there were no bone islands at that time.
Now I have to wait for the appointments to get scheduled and then wait for the results...
Has anyone presented like this for mets?
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O2behealthy take a deep breath and listen to what your doc said. She doesn't think mets are involved but is testing to be sure........she sure is on the ball!! Anything is possible with this disease so the only sure way to rule it out is to test. I wouldn't be hitting the panic button just yet.
Good luck and do let us know how you get on.
Love n hugs. Chrissy0 -
Thank you Moira - oh those stairs!
To the extent that the pain for me is not continuous but something that comes and goes with exertion, I suppose my situation would argue for it not being mets. In fact, the Tamoxifen may possibly be more to blame.
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Ladies, I have asked this question on other threads previously but am seeking input from others.
How much of a part does alcohol play in our prognosis, do you think?0 -
Racy as a person who has always drank with absolute moderation I doubt it had much to do with the fact that I was dx'd with BC nor that I am now stage IV. In the scheme of things I think it more likely that it has a lot to do with genetics.........that's just my opinion but the experts may disagree.
If you are looking for reasons why you got BC there really aren't any and blaming something you did or did not do is very self destructive. No one and nothing is to blame........it happened.
Love n hugs. Chrissy0 -
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chrissyb - I love my new oncologist and am so happy to have found her! My old onc always made me either spitting mad or brought me to tears...I felt felt like she a. wasn't listening to my concerns and b. I was not important to her. My head says its going to be ok but sometimes my heart goes off on its own and your are right...this disease is tricky so you just never know.
day - I hope your 2nd opinion comes back benign changes! My appointment for both the Bone scan and pulmonary doc isn't until Dec 26th...I just left a message to see if the pulmonary doc can review the CT and do a phone consult or work me in sooner since it does not leave a lot of time to schedule a biopsy (if needed) before the end of the year. I have a HUGE deductible that I have already met this year and woudl like to try to get as much done before the next year as a possible.
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HAPPY BIRTHDAY CHRISSY
It is already her birthday here. 5th December.
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Racy -breast cancer is a complicated beast. My husband's mother died young of mbc and my husband has two sisters. One is a heavy social drinker and the other is an alcoholic. Neither has ever had breast issues and they are both in their 50's now. It all comes down to each individual.
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Happy Birthday, Chrissy!!! (Thanks for the tip, Alyson.) I'll drink to many, many more!
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About the weight loss, I lost about 25 pounds during treatment, simply from careful eating, exercise and, I think, some hormonal cause (docs won't take that theory seriously, but as the stupid cancer shrunk, so did I). The docs were clearly getting worried, but I have since put on about 5 pounds (at their insistence) and we have scanned up and down, all clear, tumor markers OK. Just to say that it doesn't have to be mets.
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Lol Aly!!
Thanks Hiedi for the birthday wishes!!
Day it's always better to be sure than sorry..........good luck with your scans and I hope they prove to be clear.
Love n hugs. Chrissy0 -
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Hi girls... Thank you so much for this thread.....I had a routine lung x ray...they saw a lump so i had a ct... No lung tumors thank god... However they saw something on my liver........They sent me for a dx us......the Dr. Thinks its a group of non cancer blood vessels..something called hemangiona or something like that...Its to small to bio but they think maybe I may have had it my whole life.....But...It did not show up on my pet s an three years ago Its inconclusive...They r going to ct again in three months to see if it grows...I am tired scared...I always knew I could get met...I have two small kids...Can you give me any advice....I thank u so much.......this journey is so lonely...I feel like my friends have all gone away...please help me cope girls...I know its a lot to ask....love all my sisters..
Stdph0 -
It is indeed a very lonely time but you are not alone. There is a whole board here and a wonderful group of women who are here anytime of the day or night.
It is entirely possible that what has shown up on your liver is not mets. My ct scan showed two area on my liver. Unsure what it was, so since they had found a met in my vertebrae they went with treating that. 5 years later those 2 marks are still there. Many people have cysts, marks or lines on their liver that are just there and do nothing.
If it is a problem it will show itself in time. Hard as it is, waiting the three months is the best option. If you get any other symptoms then you can go back to your doc and ask for the scan to be brought forward.
Worse case scenario and it ends up being mets there are many treatments. Shock is the worst thing right now. Give yourself time to reflect and breathe deeply. It is doable and you can always come here and post or just read.
Moira
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