Things I never knew about breast cancer
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Hi AnnieKay80, Thank you for posting. Yes BC is certainly a learning curve. I spend a lot of my time now with ladies in the same situation as me and although we don't wallow in it or waste much time on pity parties WE DO understand what each of us is going through. I have found my craft work and my garden are great stress relievers. The boards here are really great! Love Muriel
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Anniekay80-- I agree with you 100% with the idea of not isolating yourself. I, too, am naturally a very private person but it wasn't until I began to talk about BC that I actually began to find a way through it. Now you pretty much can't shut me up about it! My best friend is just now going through it (she's just done her 2nd dose of chemo and shaved her head yesterday, all pre surgery) and she's just like me, very private. I've urged her to talk about it, come on these boards, find a mentor in addition to me since I didn't have to do chemo, and she refuses. She doesn't want anyone to know about her diagnosis. And now she's really struggling with anxiety. She's lost a lot of weight in the 6 weeks since diagnosis and her family is struggling with keeping it to themselves. I can't figure out how to get through to her that she needs to talk about it. I think when you don't, it becomes "a secret" and secrets many times are considered "bad". I've told her this especially applies to kids but she is bent on keeping it private.
And for me, I HATE cancer but I LOVE the person I've become since cancer.
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That it is more political than I would have liked it to be.
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I didn't know cancer could grow so fast-from 0 to 6 cm in 4 months!
Also didn't know that at stage 4 I could feel this good and be able to continue my life!
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Lynnn1234 - HER2 is aggressive. This can be a good thing, too, as it's easy to grow - and try to kill - in a research lab!
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Hi everyone, Never realised how much this stuff messes up your head!! Also never realised that they only find mets once they are 'OUT' and there is no way of checking them till symptoms show up. As someone has already said, you end up in this limbo land. Hope everyone is well. Love Muriel
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Hi Solfeo, Yes I think we all presume (before we get diagnosed) that a BMX will guarantee our future against recurrence. Its only now I understand that you only need a few breast cells left (and apparently they never get them all in a BMX) and the cancer can start again! We just have to be vigilant and enjoy each day at the same time. My advice is to find something you really enjoy (for me its my garden and my craft) and with that you lose yourself and forget about the C word for a while. Love Muriel
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Here are a few things I learned. Not all cancers can be felt in a self exam or by your physician. Radiation can cause permanent muscle damage to the muscles in the chest/shoulder area and under the arm. You can have precancerous cells in your breast tissue. (found in my pathology report) Only active cancer cells die with chemo. Some women who get radiation will continue to shrink after radiation stops for many years due to damaged tissue. A second opinion is the most valuable tool in the course of treatment decision making. If you are having shoulder mobility issues or pain under the arm when reaching for something 6 months after radiation and you had a sentinel node biopsy get an evaluation by an LE specialist it may be scar tissue and the therapist can do a treatment that will provide amazing relief. I have also learned that CA is not a death sentence. Enjoy every day., set new goals, work on that bucket list, pray for others, and most of all live. As the MO at my second opinion said, based on my Oncodx score, statistically I had about a 92% chance of dying from something other than my original breast cancer.
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Hi Brutersmom, I just got my whole pathology report a year after dx, and I see that I too have pre-cancer cells in my right breast. My doctors did not mention any of it to me either. Geez Louise
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That the new guideline to start mammograms after 45 is a bad idea. I personally know 50 women (part of a group) that were all diagnosed before 45.
Also you'll find out who you can count on. Some of the people that you just knew would be supportive will disappear, and you'll be shocked at some of the people that will rally for you!
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hi all, for me, stupidly, thought I'd be all done and back to "normal". Haven't met anyone who goes back to normal after BC. It's been over a year with this set of implants and they still hurt. Not a lot but enough to know they are always there. I thought a new set of perky boobs would be easy to handle. If I don't get a bra on within an hour of waking up, the pain is even worse. And I can only wear one type of bra that doesn't make them hurt more. What a pain! Oh well, I know others who have had it worse so shouldn't complain.
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Hi Smaarty. Yes it does seem to go on and on doesn't it. I am nearly 2 years out since diagnosis . I have picked up osteoporosis, lymphedema, prolapsed bladder (had repair operation in January 2016). Since the op had all of problems, aches, pains, strange symptoms, constant head pressure, been hospitalised twice. Had so many illnesses and diagnosis thrown at me, if it wasn't so serious it would be laughable!!! A couple of doctors now say I am having panic attacks and I have been given diazapan to 'calm' me down!!!!!!!!!!!!! My main problem at the moment is my strange gait, I just don't walk right anymore. I have had so many scans and tests and they all show normal. My doc is now saying maybe I need to see a neurologist. Got another MRI today, just wishing something would show up!!!!!!!!!!!! All quite depressing. Hope you find some relief from your breast pain. All the best Muriel
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Dear Muriel - I'm sorry you're having new issues as well as learning to live with the same-old issues. I hope things start settling down soonest! Thanks again for starting this thread.
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MUriel, thanks. I hope things improve for you.
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Muriel hope things improve for you Smaarty, I feel the same way just finished chemo, on to surgery, am wondering will I ever feel normal? duh this is my new normal. Hard to swallow but it is what it is.
Or everyone I see has bouncy beautiful hair. Never noticed before because I've always had long full healthy hair Now I noiice. And eyebrows too. Mine are biting the dust.
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Only one year (and five surgeries later), I cannot even recall what I felt like before cancer.
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"Only one year (and five surgeries later), I cannot even recall what I felt like before cancer."
Nor can I - but I know I preferred it. Every once in a while I get flashbacks to life before cancer and it almost seems like a past life or a dream world. I miss it. I miss who I was and who I thought I would be in the future.
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Hi, Thanks for your concern ladies. Had the MRI yesterday of head and neck blood vessels. Was in the machine for 45 minutes. Was thinking I hope they find something, strange as most people think I hope they DONT find anything!!!!!!!!!!!!! Just shows how BC messes with your head. Having all the symptoms and no diagnosis is not much fun, better to know and then you can deal with it. Another thing I've learned about BC is the different treatments ladies get depending on their location and country. I never had an Oncotype test, they don't seem to do them here. I was told originally that I didn't need chemo but after the pathology was done the oncologist recommended it. I did everything they told me to do as I thought that if it did come back I wouldn't beat myself up about it as I would have done everything possible. I also had LOTS of radiation 6 weeks with 7 double doses. Love Muriel
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I hope you get some answers soon Muriel. I'm in Aus too (NSW) and my Oncologist did suggest the Oncotype DX test but it's not covered by Medicare. The cost of the test is approximately $4,000 and I would have had to meet the full cost. I didn't have it done as it was a little out of my reach. Hugs Donna.
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Muriel..., I had the problem with dizziness and gait until I went to the ENT who did the crystals in the ear canals test and then did one treatment which fixed the problem. Might be something to check out. I thought that my dizziness was due to the Arimidex.
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Hi Aug242007 Thanks for you suggestion. I actually don't get dizzy, I just walk funny. My steps have become very short and the faster I go the more prominent they become. Strangely enough I can go up and down stairs and even run a few steps but the walking is the problem. My DH and I do 3 kilometres every morning and I am finding it quite an effort as the shorter steps takes much more energy. I am just hoping they find the problem and of course it may or may not have anything to do with BC.
I thought of another "Things I never knew about BC" We were told that BC spreads to the lymph nodes first and usually the sentinel node. They don't tell you that it isn't always the case. Look at how many ladies on this forum who were node negative (and some have quite a lot removed to get that result) and then go on to get mets. As a few have mentioned, its the gift that keeps giving!!!!!!!!!!!!!!!!!!! Love Muriel
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Hi, Muriel. I'm surprised by the node negative connection to mets...does that mean that the cells travel via blood stream? I hope you find out what's going on with your issues with walking. Be well
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Yes! Cancer cells do indeed travel through the bloodstream. Node negative is great, but not a guarantee against mets
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I learned sometimes nodes hold the cancer, and can be positive, due to them 'doing' their job of being a filter Or cancer can over ride of bypass them completely and get into the blood stream. There are tons of folks node positive at surgery, and never have a recurrence Others are node negative and metastasize. BC is sneaky. No one formula
24 years ago in my other breast cancer saga, I had 2 positive nodes. No recurrence. I have an entirely different cancer in the other breast, and again lots of positive nodes.
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I was told by the oncologist at Fox Chase that we all have precancerous cells though out out body. They do not know what causes them to decide to grow. Many times if we get cancer else where in our body is not a true met but a new cancer. He said that there is a lot they really don't know. Chemo is not effective on precancerous cells as I understand chemo only works on growing cells.
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thank you all for explaining this!!
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I'm back...not sure where to post this, but my BS doesn't order MRIs because she feels that they generate too many false positives. She only orders one mammogram a year because she said that having more than one per year may actually contributed to too much radiation and could cause cancer. Do you think that this minimal scanning is a good thing or not? I'm interested in your input
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Thank you, solfeo, for this information. I find it interesting how many health professionals utilize often widely different approaches. I'm wondering if I should ask about a test for circulating tumor cells, however, I'm guessing that none of my doctors would think it's reliable. So frustrating.
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Hi, Solfeo. I don't know if I do want the test. I was interested in finding out a bit more about it. My MO is very passive in that he has never suggested any tests at all. I saw him only once and he gave me a prescription for Arimidex and said to come back in six months. This was before I had radiation. I was the one who had to ask him to do the Oncotype test. I don't know if this is customary or not. I am wondering why I even need to see him
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Hi JuniperCat, Thanks for your post. I am no expert but from what I've learnt is that when the BC surgery is done they usually remove some of the lymph nodes on the cancer side and often the sentinel node (detected by injected dye stuff which alerts the doc as to the first node which the breast is draining to. Some docs just take the sentinel node and if that appears to be clear that's all they take. If there is cancer they do a clearance (take all the nodes from that side) As the BC develops it begins to shed cells. The larger the tumour the more cells it has already shed. HOWEVER, some of the smaller tumours are very aggressive and have already shed cells before the cancer has been detected. I presume it enters the body through the blood stream, BUT as I said, I am not an expert. If you look on the various boards there are many ladies which started as stage 1 and grade 1 with NO positive nodes. Unfortunately if you are stage 1 with no positive nodes it seems that often you are under treated and end up with mets. The bottom line is none of us know what or where we are going to end up and that's what most of us find the most difficult. The idea is to live your life and do all the things you want to do because we all only have today and that's about the size of it!!!!!!!!!! Love Muriel
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