MIDDLE-AGED WOMEN 40-60ish
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Ceezetheday love your new avitar
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Hi Everyone, thank you all for the love and support. It makes me cry. I am trying to pull myself together today as best as I can. I went to see the ps this morning and I really liked her. I will be getting the expanders when they do the mx and she said that the left breast that had the radiation yrs ago was in good shape and not going to be a problem. We are even going to go a little larger than my almost b cup.
I do need some input from who ever can help. One is one the lymph nodes. They want to go in and take the rest. I am freaking out about it. I asked if they could radiate them instead and she said I need to talk to the MO about it on Monday. Is this even an option or is it worse than having them removed??? I am right handed, work as a pastry chef, and I do oil paintings.
The other thing is about the oncotype dx. I know they don't want to do it if there are more than 3 positive node (the 4 she took were all positive) but my thinking is cancer is cancer and if the test will tell if it will even respond to chemo what the hell do the nodes have to do with it??? I could potentioally go through chemo and it do absolutely nothing for me other than cause me to be sick and lose my hair, eye lashes, etc... Can I insist on a test or will they just down right refuse me.
They sent a sample out for the ILC to be tested to see if that one is ER positive as well as the IDC. I won't know that until the end of next week
I really appreciate everyones help. I want to have as much information as I can before I committ to anything.
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Dianarose--you can certainly ask for the oncotype test, but your insurance may not cover it. I don't know how much it costs, but it may be worth it to you to pay out of pocket. Research shows no difference in the length of time to recurrence or death if the lyphnodes are all taken out or not. The biggist reason the lymphnodes are taken is to help with staging. So having that done won't change much for you, so you may want to talk to your surgeon, med onc and a radiation doc before making a decision. There are side effects to both the surgery and the radiation, and both leave one at risk for lymphedema. Find out the long term effects of both procedures before you make up your mind what you want to do. Getting all the info is best thing you can do for yourself. Keep asking those questions!
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NativeMainer- holy crap batman--- I just looked up the cost of the oncotype dx and it is $3975.00 but the site said they do have some financial assistance. It is still cheaper than chemo if the score is low. I don't know or feel I can trust all of the doctors involved. After all it is how they make their pay checks.
Another question- if the cancer that is in my lymph nodes(which is the ILC) is ER positive will the tamox help in the nodes as well or only in breast tissue? If we can block or starve it in one place does work the same somewhere else? I really didn't have any tumors so to speak. It was like someone took a pepper shaker and sprinkled the breast tissue.
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dianarose, i think that if you're lymph node POSITIVE, the oncotype dx is not for you. here's a website for the test:
http://www.oncotypedx.com/en-US/Breast/PatientCaregiver/IsOncotypeRight.aspx
i was eligible and my insurance (medicare!) paid for all but $10. your insurance might pay, but, of course, i don't know. you haven't included all your information about your diagnosis, so it's hard to know what's going on, but personally, i would think that with 4 positive lymph nodes, chemo would be recommended. that's just my opinion, though. if you're HER2 positive, you'll be doing herceptin and it has to be combined with chemo at first. i might have missed something in the posts, and if so, i'm sorry.
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yes, my understanding of the onco testing is that it's for node negative.
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Dianarose, I still have problems holding up my left non-dominant arm for any length of time. That's where a couple nodes were taken out. I can't imagine how much worse it would be if they took a whole tier of yours! (Apparently, most people have 2-3 "tiers", each holding approximately 9 nodes) They should leave SOME nodes in to handle lymph fluid. Otherwise, your odds of lymphadema go from 30% to 100%!!!! There has been a LOT in the "news" lately about nodes. Don't let them take them out unnecesarrily!!!
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My MO said it could be done with 3 pos. nodes or less. I guess what I am trying to say is what difference do the nodes make when it comes to the testing to see if the chemo would help you with the cancer. If I did not have pos. nodes and had the oncotype done and my score was 4 they would not reccomend chemo, but because I do have positive nodes they want me to have chemo without even knowing if my cancer would respond to it or not does not make sense for me or anyone else. The cancer that is in my nodes is the same that is in the breast so if my cancer was to get a low score how will it help me just because my nodes are positive? I just think they are to quick to put us through chemo without knowing if it will work when we now have the technology to know prior too. I hope what I am saying makes sense. I have learned to question everything now. Our family lost a 3 yr old to brain cancer and found out later that the surgeon who did the emergency surgery was not qualified at all and he is now in jail and was found responsible for the deaths of 5 children including Jeremy.
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Dianarose, I think the biggest factor when nodes are invovled is that it is proof positive that your cancer wanted to spread. If it was in the nodes, it very well could have moved beyond. Not to be scary, here. Chemo is almost a given when the tumor is large, or in your case, there are multiple foci and several different types involved (meaning the ILC and the IDC could have different pathologies,) plus it has gotten to the nodes. Although, like with everything, they don't give any guarantees with chemo, it is another tool to fight B/C with. With aggressive cancer, they are most likely to use all of the tools at their disposal.
Can you fill in your Dx line? Do you know if the B/C is ER+ or not? Her2 positive or not? What is the Grade? All those things figure into whether chemo would be most beneficial too. For instance, chemo is very effective against fast growing Grade 3 cancer. I know it seems arbitrary that the docs are drawing the line at three pos. nodes or less, for ordering the Oncotype test; but I think they have looked at your pathology and based their decision on that already. It is not a question of will the chemo work, but how much benefit you will get vs. the risk. In your case, they already know the benefits would be substantial.
The Oncotype is for B/C of <2 cm, ER+, with no node involvement (or less than three, which is a more recent standard of care.) I'm not sure you qualify on the size either, don't know about the ER status, and for all we know it could be in more of the nodes. I know you hear a lot about the Oncotype test, but it is really a tool for those whose cancer treatments are more of a challenge to get right. The docs are telling you that your chemo is not "questionable." Believe me, you don't want to skip something that can do you some good, as long as you are able to handle it, healthwise.
I know your mind has to work through it. We don't mind answering questions as you go through it.
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Elimar- how do I put in all my info. When I go to my home page and try to edit it only lets me choose one type of bc. I see others are able to write other things in as well. I am computer dumb.
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They write extra in the "signature" part, I think. I don't know becaue I have not tried it.
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Ok, thanks. I will try it tomorrow. I am so tired, but can't sleep. I am going to work this weekend to try to feel normal again if that is even possible. I don't know if there is going to be enough room to put all the crap in from my report. It is 8 pages long and they said there was more coming that they hadn't finished yet next week. I feel so out of sorts. I have 4 different things going on in the same tissue. The MO and bs said they have never had anything like me before. That didn't make me feel warm and fuzzy.
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dianarose, on your profile page, there's a place called 'diagnosis.' there is a list of questions about diagnosis that you answer. just go to your profile page, click on 'edit my profile,' and you'll be able to fill in the answers. hope that helps!0
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Dianarlse: latest evidence shows that for women with micromets in the sentinal node there is no medical advantage (survival) to taking out more nodes so long as the surgery is followed up with chemo and radiotherapy to the axilla as well as the whole breast.
I had cancer cells in my sentinal node in December and did not have any further surgery.
The incidence of lymphodema after total removal of the axillary lymph nodes is above 30%, the incidence of lymphodema after just sentinal node biopsy and radiotherapy is somewhere between 7 to 10%.
Jenn0 -
Hey friends,,,hope everyone is enjoying spring, it came so early out east.
Dianarose....I totally understand where you are coming from.
It is confusing.
When you look at the stats for low oncotype even with a higher number of positive nodes, it does not look like the chemo has much of an impact. (They break it down into three groups).
I can't remember how many nodes they went up to...I think it was 10 or maybe 12, It was a small study, and the group of women with low oncotype and high nodes was really small, but it's true, the chemo didn't help them much more than it did for the women with fewer nodes.
There is a study that suggests that there is a sub group with a high KI-67 but low oncotype, that may respond differently.
I think one variable is that some research suggestes the cancer in the nodes actually may have different properties than the primary tumor.
I hope some of this helps. You have found one of the most supportive groups on BCO.Love and cookies to all
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Jenn, I've read the studies with your figures in it, but recent studies have shown that there is a 30% risk for lymphadema with a modified mastectomy AND lymph node disection. Removing the breast does remove some lymph nodes as well, as there are lymph nodes within the breast tissue itself. Of course, by removing the breast tissue it was assumed there was no longer a need for those lymph nodes, but the supraclavicular nodes drain to them, so once they are gone, there is no route.
Then, when you add in the removal of all three tiers (I, II and III) of auxiliary lymph nodes, there is an almost guarantee of lymphadema. Remember, LE can occur much later in your life. It has been recorded as late as 20 years later, but there is no tracking of anyone earlier, so there are no earlier results than that.
LE does not necessarily imply a large arm. I have mild truncal LE that I really don't have to treat unless I feel it and it's bugging me. Then some poor souls get full-blown LE where their arm doubles and triples in size! As in most things medical, there are all sorts of extremes and diagnoses. Some PTs may not even acknowledge my mild LE, but it was my Onc that spotted it!!
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Dianarose I am so sorry about your crappy pathology! Make sure to write down all the questions you have for your doctors. I know you have a battle ahead, but you'll get through it. You came to the right place that is for sure!
Eli....you asked if anyone else had confusing pathology. When I found out I had BC, the needle biopsy indicated I had Mucinous Carcinoma. This is what I was told. After my tumor was removed, it came back as IDC. I asked my surgeon about it and he told me that the area they took the biopsy from had Mucinous cells but the tumor itself was IDC.
I have both truncal LE and some in the arm. I had measurements taken for my sleeves last week. I go back April 3rd to pick up the sleeves. She also is going to try to get me into a program that provides financial assistance for some bras. She said that they will be custom made for me which would be nice. My LE therapist told me my BC breast probably will always be larger than the other breast. I am very uneven. The LE is graded scores 0-3 and mine was rated a 2.
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Jennt28 (Welcome!) & Barbe, I am not too well versed in LE and the accompanying stats, but maybe one of you could post a link to the most recent studies if you have it. I feel it is such an important factor to weigh and while getting all the cancer out is the first priority, I think avoiding the lifelong ailment of lymphedema is a high priority too.
Dianarose, I bet Binney4 would know about the difference they are writing about. She is an encyclopedia of all things lymphedema, so PM her about getting the nodes out if you want. There are still A LOT of doctors that don't even consider lymphedema as part of the equation, but you really should check what your best odds are to NOT wind up with LE.
janis, exactly! How does one part of the Dx just "disappear" from biopsy to surgery? As if it all isn't confusing enough. Thanks for responding. It didn't seem like that big of a thing to create a thread over, and I was hoping someone here knew what "lobular features" actually means?
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Again, your "worst" diagnosis becomes your only diagnosis. So if you have a lot of mixed crap and IDC, then your diagnosis is IDC. The other crap doesn't matter, it is just phases building up to IDC.
I'll try to find those stats e, I think I found them here on bco.org!!
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ps. about the above picture. I can NEVER wear beige pants!!! I look like a butch going golfing!!! AND I golf! But not in beige pants.....heheheheh
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I agree, the largest or most agressive component of a person's cancer is basically their Dx, and treatment for that component covers the rest along with it, but you would still think that in the final surgical pathology everything would be noted. For example, my DCIS was noted. I only had a tiny bit (like 5% of a 7mm tumor, so that is really quite tiny.) If the "lobular features" were mentioned in the biopsy, it is just weird that "lobular features," or anything about "lobes" for that matter, was not in my final pathology. Like on janis' report, the main "mucinous" description of her biopsy, doesn't even get any side mention on her final path. report. The final pathology report IS supposedly comprehensive, so if anything, you would expect everything from the biopsy to be mentioned and possibly even more if more is found. I get that "lobular features" was a description of my IDC (and probably nothing to do with actual ILC,) but I could not even get a doctor to explain exactly what lobular features were. Is it a vague pathologist secret? In janis' case, "mucinous" is an entirely different cancer, so although she ended up with IDC I would think the mucinous component would still be mentioned. It makes you feel like the second set of eyes looking thru' the microscope is looking at something entirely different than the first ones. When the wording of the Dx is not inclusive or does not agree, it is disturbing. To me anyway.0
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I wear tons of purple & TAN pants, but I don't golf & I think I've given up on what I think other people think, I think!
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Hello, all!
I love this thread -- it's so congenial!
I just wanted to pop in and clarify a couple of points about lymphedema, which is probably the most confusing subject on the planet!
First of all, most important to keep in mind that lymphedema, nasty as it is, is not the enemy. The breast cancer beast is. Do everything you need to in order to make this go-round with it the last you'll ever have to face. And after that plan's in place, there are lots of options to help reduce your risk of lymphedema or deal with it promptly, when it's easiest to manage.
Unfortunately, getting accurate statistics about lymphedema occurrence is impossible, since there's no one standard for diagnosing it. The best we can come up with is a range, which is very, very wide and fuzzy. So, basically useless. Better to know that there is absolutely no reason to feel lymphedema is guaranteed, no matter how many nodes are removed. Some women with 30 or more nodes gone never develop lymphedema even if they buck hay bales for a hobby. Number of nodes removed is only one risk factor, and not a guarantee. Others include previous trauma to the chest or axilla (including previous surgeries), overweight (though being thin is no guarantee you'll avoid LE either), and post-surgical complications like infection or seroma (or cording, for that matter). Beyond that, there are other factors affecting it that nobody yet understands, some of them likely inborn or genetic.
Also, just as there's no such thing as being "a little pregnant", there really is no such thing as "mild" lymphedema, though the term gets thrown around a lot. Lymphedema is staged, just like breast cancer is, and left untreated it will progress. The arm may get huge, or there may only be tissue changes caused by the presence of stagnant lymph fluid (fibrosis, abnormal fat accumulation, skin changes, increased risk of serious systemic infection, leakage of lymph fluid through the pores, etc.)
The good news is, lymphedema can be treated. If treatment is started early and you maintain good self-care, it can be kept from progressing. If it has already progressed it can be reduced and controlled. The scary pictures we sometimes see of women with arms the size of old-growth tree limbs are NOT inevitable -- those women were not treated properly at an early stage. None of that needs to happen to any of you!
Lymphedema risk reduction can start before surgery, with a pre-treatment visit to a well-trained lymphedema therapist for base-line arm measurements and individual risk assessment. Risk reduction information here:
http://www.lymphnet.org (See their position papers on risk reduction, exercise, air travel, and breast cancer treatment)
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm
I hope some of that helps. Hopefully we'll one day know enough about the lymph system to prevent it from developing after cancer treatment. But for now, knowledge and risk reduction are our smartest tools for getting our lives back in control after this breast cancer detour.
Be well, and may you never have a "swell" day ever!
Binney0 -
Dianarose:
As another woman who developed lymphedema--with only 3 negative nodes out, I have to strongly agree with Binney (who is amazingly wise)
The greatest threat is the cancer: and ILC with 4+ nodes is likely, depending on the size of the tumor a T?2N2--so it's already a IIIA stage and requires intensive treatment to get rid of this beast
http://www.cancer.org/Cancer/BreastCancer/DetailedGuide/breast-cancer-staging
I work in rad onc--but am NOT a rad onc--and I do staging forms and read path reports all day at work:
In my experience, ILC is sneaky and often not seen on imaging.
The Guiliano study on limiting ALND set the standard that the primary tumor was T2 and 1-2 nodes were positive. It did not say that a woman with 4 positive nodes got no survival benefit from ALND.
The rad onc I work for feels LICS rarely needs treatment, he treats DCIS, IDC and ILC.
The bottom line is that you'll need to be discussing your treatment with your treating doctors and you can bring up, right from the start, your concern about lymphedema, and some centers are sending women to lymphedema therapists pre-op to measure them and guide them on risk reduction.
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
Lymphedema is no fun, but it's not life-threatening (except for infections).
Dianerose, I'm sure you're on an emotional roller coaster right now, but I hope as you move ahead with treatment, you'll be able to raise your concerns and feel comfortable with your treatment.
Hoping you never, ever join the "swell sorority"
Kira
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I got this quote off the Susan G. Komen from 2010:
Roughly one-third of women who undergo axillary lymph node dissection develop lymphedema. Tools to help manage lymphedema include manual lymphatic drainage, use of compression bandages and garments, training in skin and nail care (in order to reduce the risk of infection), and instruction in exercises.
Of course, my comment above should have said "after surgery" not "with breast cancer". That was implied.
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HI Everyone, you are all so helpful. Thank you all !!! I went back to work today. It felt great and almost normal. I am really tired now though, plus I woke up with an eye infection that really hurts. I only get them when I cry, so I am done crying.
My path report is so confusing. It is 8 pages long and is not completed yet. I will get the rest next week. I do have another question though. Does anyone know if rads after a mx is the same duration. I know there is some tissue left, but it seems like they would be radiating my bones.
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Barbe, recently Binney and I were reseaching the literature on the incidence/prevelence of lymphedema after breast cancer treatment, and as there is no single diagnostic definition of lymphedema, the range is 6-60%, you really can't predict.
There is a prediction tool at the top of the LE forum, for women with ALND and it just gives a percentage chance.
I recently met with Jane Armer PhD who has studied 300 women for 84 months: she's used the perometer, measurements, symptoms, and she has found, depending on how she measures, the incidence varies hugely. What she told me was that most cases showed up in the first 5 years.
I feel like when a woman is facing breast cancer treatment, she should be aware of lymphedema, and preventable risk factors, and advocate for good, sound treatment that minimizes her risk, but I sure don't want to be scaring women or scaring them off from getting the treatment they need because of the risk of lymphedema.
I was low risk. Go figure.
I see women all the time, in my office, who "should" have lymphedema--all the nodes out, chemo, lots of radiation, and they don't. And I "shouldn't" and I do.
The modifable risk reductions are: 1) not stretching through the axilla for 10 days post op, 2) treating axillary seromas promptly, 3) avoid overuse of the arm
On the LE forum, there's lots of good information about risk reduction.
Priorities are key: treat the life threatening illness.
As more of us survive, we deal with a lot of treatment related side effects: but we're surviving and that's the key.
Kira
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Kira, Not knowing any better, I started stretching my axila by the third day. My treatment side is my dominant hand and I haven't shifted anything to the other side. Luckily, maybe with thinness going for me, I escaped LE (just having some edema around the surgery/rads area til rads finished up and then I got a few PT sessions for edema and to break up scar tissue (which in itself might help lymph drainage.) You are right, there is no surefire method to avoid it, so I just consider myself lucky.
Thanks to you and Binney4 for providing great info.
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Elimar, I was doing overhead stretches by the second day, and got a whopping axillary seroma and tons of cords. And then early LE--three weeks out.
And I heard a lecture from Jodi Winicour at Klose Training about how the little lymph connectors connect best in the first week, so don't stretch them away from each other.
More and more it looks like there's two kind of women who get LE: those with genetic predisposition and those who have a more robust lymphatic system and get an overwhelming insult to it.
I figure I'm in the first category. There was a genetic study showing that women with LE tend to share a gene with people with hereditary LE.
Elimar, based on what Jane Armer told me, she's not seeing a lot of new cases at 84 months.
I always say the odds are always in your favor, NOT to get LE.
Glad you didn't.
Kira
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re: those with genetic predisposition
I wonder if it might be tied in with the genetic (or individual) disposition of how one creates scar tissue. You know, like how some get keloids. I am just imagining that a person that healed with a lot of extra scar tissue, or like you said had greater area of surgery, therefore more scar tissue, would be at a disadvantage because as scar tissue does not get good blood flow,it probably does not get good lymph flow either. The blood and lymph vessels must be more disjointed as they try to form and regrow in that type tissue.
Just advancing a theory.
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