MIDDLE-AGED WOMEN 40-60ish

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!

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

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. 

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!!

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!
Binney

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.

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

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

Good theory, Elimar! And there is some evidence that when surgeons treat the tissue gently and don't "rearrange" things too much, lymphedema is less likely. Which I think ties in with your theory too.

Fortunately there's lots of new research being done, so more answers will be available with time.

Be well,
Binney

can someone explain to me why i have so much scar tissue UNDER my breast when the lumpectomy was on the SIDE?  and i had two nodes removed under my arm.  my breast hurts, especially underneath it.  i saw the PA last week and she said the lumpiness and pain under my breast was only scar tissue.  i don't understand that.  anyone?

HI- Help!!  the incision site under my arm is getting more swollen. When I saw the doc's on Friday they said it was normal from the surgery, but it's getting worse. I can't put my arm down by my side. It is about the size of 2 golf balls put together side by side. My surgery was on the 15th. Is this normal or do I have an issue here. Too add to this I woke up with my eye almost swollen shut. I am sitting here with a warm pack on my eye, but I don't know what to do about the other and I have to leave soon for work.

Diana, also try this meanwhile http://www.youtube.com/watch?v=Q9FP6AHj9Eo&feature=related and make sure you are hydrated.

Diana, yes, feel free to PM, of course. They may well drain it for you and that should give you relief. That is what I mean by "dealing with it."

I would also urge you to get a referral to a PT who specializes in mastectomy patients and knows about lymphedema. It can help prevent or minimize any swelling problems.

I got to try all the rides in the park. Like you I also had all manner of cancer discovered after the BMX. Because my tumor was large, I had chemo both before and after the BMX, total of 8 chemos, then  radiation, 30 treatments, then a hysterectomy (2 weeks ago). It has been quite the year, but I am still here, beginning to feel human again and planning to stick around. I am 48 years old, by the way, DXed at 47.