Things I never knew about breast cancer
Comments
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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 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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solfeo or others regarding the CTC test -- I may be rare, but I had mets in my liver with no circulating tumor cells found. We did try the test, but it wasn't a good indicator for me as it came back at 0. So, being positive or negative in that test is not a guarantee for anyone and should be seen as just one of many measures to possibly use.
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Can anyone tell me if they have been told that they have atypical lobular hyperplasia in the opposite breast, and what it means?
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Fe_Princess, I only know it's classified as 'pre malignant' lesion. I had it in my other breast over 25 years ago and eventually had cancer in that breast. (had lumpectomy and radiation, and was gone, no recurrence)
What are they saying to do about it?
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Fe, it is "pre-cancer." I also had it, along with LCIS, in the breast they all thought was perfectly healthy. My surgeon told me it was a good thing I insisted on having him lop both of them off while he was at it.
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Hi Momine, thanks for the reply. I did not even know it was there until I read through my Final Pathological Report. I just wonder if I should be worried or at least inform my current oncologist. I was diagnosed/had mastectomy in the states but I now live in Switzerland. I only had a single mastectomy because I though less was better. I am recovering from a SGAP surgery after my body rejected the implant. I had a mammogram before my surgery. I guess it does not show up. I also had a reduction on the right side.
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FE, Definitely bring it up. Perhaps in addition to mammography, they can do MRI. It needs to be closely followed
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Hi everyone, Another "Things I never knew about breast cancer" is how shocked I am to discover how many ladies have clear nodes and then get mets. I was told at the beginning that when the cancer spreads it goes to the lymph nodes first, namely the sentinel node. I guess that's the common route but like everything else with the sneaky cancer, sometimes it does something different. I am truly shocked how many early stage cancers with no node involvement end up with mets. Hope everyone is well out there. Love Muriel
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I learned that cancer is a genetic mutation, that noone knows what causes it (except the hereditary ones) and that while attitude, diet and exercise may help you get though life and treatments, there is very little evidence that they cause or prevent cancer.
I learned that every medical intervention comes with risks that are not always explained, that we have to ask a lot of questions and, stay vigilant, and be our advocates in the system.
I learned that many people are touched, directly or indirectly by cancer, but that a lot of misconceptions about cancer remain. I still know very little except about my particular type of breast cancer.
I learned that love rules and to fully live and experience the moment.
I learned the importance of community and sharing.
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Pipandor, that's an excellent summary that many here will agree with.
Today I leaned that scientists have just discovered that breast cancer uses cholesterol-based molecules to evade anti-hormone treatments and promote recurrence.
Read the article HERE.0 -
Muriel, just out of curiosity, is it the standard protocol in Australia that everyone with grade 2 IDC, regardless of stage, hormone/HER2 status, size or nodal involvement gets chemo? I remember reading from another Aussie woman that OncotypeDX is not standard “down under” the way it is here. Perhaps that’s why you think Stage 1A Luminal A women are “undertreated” in the U.S.?
Another thing I learned about bc: that radiation can cause neoplastic skin changes, even w/o irritation or peeling....and even where the beam would have “come out the other side” were we not lying on our backs on a hard table. I just had a “pre-melanoma” removed from my back at the precise spot one of the beams would have exited....and it wasn’t there in Dec.
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