Things I never knew about breast cancer
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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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I actually had my blood tested for circulating tumor cells (CTCs), which isn't done routinely yet but will be once they have more understanding of what it means and what to do about it. I did have them but in a low concentration.
I'll tell you what I have learned from talking to people and reading.
My naturopath tests all of his cancer patients (except brain cancer, and one other that I can't remember), and he told me that all of his breast cancer patients have some level of CTCs. I was hoping not to have any, and he said, "That would be very unusual and indicative of a very early non-invasive cancer," and he hadn't personally seen it. After that I asked my MO if all women with breast cancer have them, and her answer was, "Probably, but it's not yet proven, and we don't know how to tell which ones are likely to land and grow, or what to do about it." That is why everyone doesn't get the test.
It sounds scary, and it is to an extent, but only because anything is possible. Most of these cells are very fragile and don't live in the bloodstream for longer than 24 hours. They have to have the characteristics necessary to survive the immune system and metastasize, and the environment in your body has to be just right. So even if you do have them that does not by any means indicate that you will recur. Some do, but a lot don't. Statistically speaking, the other tools that are used for prognostic purposes are still the most reliable predictors of whether a particular cancer is likely to spread.There are always going to be exceptions and outliers, but for the most part you can trust the statistical risk provided by your MO based on clinical assessment and other standard tests (Oncotype, etc.).
What I do about it is take very good care of my immune system, and do everything I can to reduce inflammation and stress in my body. A healthy body is better equipped to fight off any disease. That's not pointing the finger at anyone who has a recurrence, because anyone can regardless of what they do or don't do, but it can't hurt to stack the odds in your favor.
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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 JuniperCat - In hindsight, I would say what is the point of testing for them if having that knowledge won't change anything? In my case it didn't. My ND recently suggested a retest and I turned it down because it won't change my MOs plan of action and I'm already doing everything I can on the side with the ND. If you are prone to a lot of worry, the awareness of CTCs just feeds that tendency.
If you think you are interested in having the test, you would want to see an integrative MD or naturopathic oncologist, but I would ask how the results would specifically affect recommendations for treatment, one way or the other. If it wouldn't change their recommendations, or you're not likely to choose the recommended treatments regardless, then it would be a waste of money to test. It was expensive.
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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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Hi again, Didn't realise that there was another page with more posts, 9 more in fact. Plenty of interesting facts and more "Things I never knew about BC" Keep them coming!!! Love Muriel
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I woke up from a SNB to find that 14 nodes had been removed!!! Oops, sorry but now you can never have blood drawn, a shot, IV, blood pressure taken on your left arm, as it will cause lymphademia, and you will be a extreme risk of fatal infection FOR THE REST OF YOUR LIFE.
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"Unfortunately if you are stage 1 with no positive nodes it seems that often you are under treated and end up with mets."
I think this is a very broad statement that needs to be clarified. The fact is that about 25-30% of early stage patients will, at some point, develop mets. This is far more often than we would hope, but the vast majority of stage 1 patients do not develop mets. Treatment is not benign and carries it's own risks, so doing every tx possible at stage I is not a better path nor a guarantee against mets.
"I woke up from a SNB to find that 14 nodes had been removed!!! Oops, sorry but now you can never have blood drawn, a shot, IV, blood pressure taken on your left arm, as it will cause lymphademia, and you will be a extreme risk of fatal infection FOR THE REST OF YOUR LIFE."
If your sentinel node is positive for cancer, the surgeon will do an axillary node dissection. You gave permission for this when you signed your consent form. Yes,you must take life long precautions to try to prevent lymphedema. They are not that difficult to live with, though no guarantee that you won't develop LE. As for the fatal infection, I think you're referring to cellulitis. Again, good hygiene should you cut your arm, hand, fingers etc. on the compromised side are important. Cellulitis is usually easy to recognize and treat quickly, so for those with access to medical care, fatality is unlikely..BTW, although less likely, you are at risk for these same things even if you've only had an SNB.
These things are all unwelcome "souvenirs" of breast cancer and I hope tx progresses to the point where this is not the case sometime soon
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Junipercat....just want to address your question about MRIs. Yes you can have false positives. However IMO you have dense breasts they are a must. Both preoperatively and for screening purposes. Mammos and US can easily miss something serious in women with dense breasts. Good luck to all....
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Muriel, that is exactly what I had it was a gait issue. I walk 5 miles a day but before the crystals treatment I had a slight dizzy feeling when starting to walk. I also do believe that cancer spreads through the blood even without being in the nodes.
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thank you all for your input!!!
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Smurfette26,
I don't think you would have been eligible for the Oncotype test because you had one positive node. I only tell you this so you don't look back and feel bad that you didn't have it due to the cost.
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Actually, the Oncotype is now used for up to 3 positive nodes.
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Hi Exbrngrl, Thank you for your post and input. Regarding the statement about stage 1 ladies being undertreated is taken from other ladies on these forums. I notice that in the U.S.A. a lot of BC ladies only have surgery for early stage BC. Some get radiation, some have hormonal treatment and others come off it as they cannot tolerate the SEs. My experience has not been this as I had the 'LOT' thrown at mine. At the end of the day 20 to 30% recurrence is still high in my books anyway. As I said, none of us knows whats in store for us and we really have to live with the uncertainty and enjoy every day as much as we can. Best wishes to you all Love Muriel p.s. I would also like to say that having everything thrown at it can still not guarantee success and as we are all learning how sneaky BC can be. May also add that I have lymphedema in arm and breast and I only had the sentinel node taken. Apparently the odds of getting lymphedema with only the SN taken is something like 1% (so I was told) BUT then apparently radiation can also cause it. Another thing I learned along the way!!!!!!!!!!!!!!!!! This is why I don't take any notice of percentages anymore cos if you are in the 1% it just sucks
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Hi, I would also like to add that in no way am I suggesting that so called 'under treatment' is the reason why ladies get mets. I do not have the knowledge and I am like most of us, learning as I go. When we find out we have BC we go with what our doctors suggest as they are the ones with the knowledge and I think most of us trust that knowledge . Probably what I am saying is that the treatments offered have a HUGE range, even from state to state in the U.S. for the same stages, grades etc. Also I notice that some ladies change specialists because they are not happy with whats beening offered regarding their treatments. Again, this is only just an observation NOT any blame game. Best wishes to you all Love Muriel
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Thanks for the input Janett2014. As Hopeful82014 said the Oncotype DX is now being offered to patients with up to 3 positive nodes.
Although I had one positive node my surgeon is not a fan of Auxiliary Node Clearance as he feels it can create a host of potential problems. He said studies now indicate that the prognosis of women who have more nodes removed further down the track if necessary do not have worse outcomes than those who have many nodes removed during their original surgeries.
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Hi exbrnhgrl, Thanks for the info. My SN was negative but he went back for more anyway. When I woke up, he apologized that he had taken too many, so he knew. It is spilled milk really. Just wanted to add to the laundry list of BC items...I am sure to find more. I am still grieving my pre-cancer life is all.
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FePrincess,
Yikes! That is indeed an oops. I know he apologized, but can't imagine why he would go back and do anything after it was determined that the sentinel nodes were negative.As you say, it's done. Just take whatever precautions you need to try to keep lymphedema at bay. There are no guarantees, but awareness of risky activities can help.*
* I have very mild LE which I have, so far, managed to keep in check
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Oh wow Fe Princess. I was wondering why 14 nodes were taken out with a 0 affected. I would have blasted him even with the apology. Do be extra cautious with that arm.
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Fe Princess, what the H? He took the extra nodes for fun or something? I had 22 nodes out on the cancer side and the sentinel on the other side. I did have some LE issues initially, but with a great PT who did drainage massage, we managed to reverse it. I have occasional, minor issues, but nothing to cumbersome.
Also, lymph fluid only moves around with the movement of muscles. They tell you not to lift weights, for example, after lymph node removal, and that makes sense, to a point. I do lift weights, but tiny, itty-bitty ones, like 2-5 pound hand weights. It seems to help keep my system in order, and I find that if I am having issues, getting some exercise, like simple walking, stretches etc. often helps.
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Momine, your comment about lymph fluid only moving around with movement of muscles made me wonder: if someone has cancer cells in their lymphatic system, does exercise make them spread faster/easier? Yikes that makes me wonder if there is a downside to trying to be physically active!!
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cubbieblue, I don't know the answer to your question, but I will say I wondered the same thing myself. I was told by MO to start exercising immediately (I was very overweight and sedentary), but my intuition told me to wait until after the surgery for that exact reason. I do exercise regularly now, and my personal opinion is that the benefits outweigh any risks once the cancer is removed and we have undergone treatment. But I don't think you would ever find any doctor who would tell you there is a downside to exercising. It was just a feeling I had.
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Cubbieblue and Solfeo, I really doubt that since all research so far shows that exercise decreases cancer risk as well as recurrence risk. The stuff will move around whatever you do or don't do. The crucial part is not that. The crucial part is whether the circulating cells can find a pleasant, hospitable place to start growing. Exercise makes that part more difficult.
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Hi Everyone, I am very active and have not had any inkling of LE thank the heavens and I am very careful. I am a runner and a climber so I have had to modify my activity. I am two weeks out from a SGAP, so I am not doing anything at the moment which is quite a challenge. I love this thread. I have learned so much!! You are all in my heart.
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How little did I understand. Thought when people said they caught it early they were cured. Had no idea AIs and all the side effects like neuropathy and lymph edema were part of "caught it early" Didn't know BC is a chronic illness. So many people thinks he same way like this is something of my past like getting an appendix out
On the positive side I thought stage 4 was the grim reaper. Didn't realize how many women are thriving despite there challenges with that diagnosis
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I had no clue that it takes about 180 days for breast cancer to double in size! I thought it grew much slower than that. Pretty scary that it can grow that fast. I guess that might explain the occurrence of some "interval" cancers.
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