Studies on SNB?

BeckySharp · January 2012

Happy to hear the news. Rest comfortably. Becky

ellentk · January 2012

My lumpectomy w/o SNB went very well and I feel almost recovered.

I got the first part of my path report today and it's made me decide to go ahead with an SNB, which I scheduled for 2/3. My tumor is pT1b, .7 cm IDC moderately differentiated. The Modified Bloom Richardson grade is 2 (architectural: 3; nuclear: 2, mitoitic: 1), no lymphovascular invasion. Also found, probably in another spot, was DCIS, intermediate to high grade with central necrosis with associated microcalcifications, extensive, EIC positive with these architectural patterns: comedo, cribiform, papillary, solid, nuclear grade: 3; Necrosis: present, central (expansive comedo). DCIS is seen in 8 of 9 slices of the specimen, 10.5 cm, and is estimated to span ax. 9 cm.

I'm not thrilled about this decision but since I've got IDC grade 2 and there's a lot of DCIS with unreassuring characteristics, I'd rather know if any nodes are involved.

I may have an easier recovery, recovering from one operation at a time, and I'm still scared of lymphedema, but I think with this path report, an SNB makes sense.

Ellen

kira66715 · January 2012

Ellen, it does make sense.

Here are some post op suggestions:

Don't raise your arm above shoulder height for 10-14 days--lymphatics heal in that time frame and are delicate--

There are suggestions from the ACS for the first week, and they're good--I've made some comments in the text and lengthened it to 10 days:

The week after surgery (more like 10-14 days)

These tips and exercises listed below should be done for the first 10 days after surgery. Do not do them until you get the OK from your doctor.

Use your affected arm (on the side where your surgery was) as you normally would when you comb your hair, bathe, get dressed, and eat. (just don't raise it above shoulder height)

Lie down and raise your affected arm above the level of your heart (you can bend your elbows--no reaching for recovery yet...) for 45 minutes. Do this 2 or 3 times a day. Put your arm on pillows so that your hand is higher than your wrist and your elbow is a little higher than your shoulder. This will help decrease the swelling that may happen after surgery.

Exercise your affected arm while it is raised above the level of your heart by opening and closing your hand 15 to 25 times. Next, bend and straighten your elbow. Repeat this 3 to 4 times a day. This exercise helps reduce swelling by pumping lymph fluid out of your arm.

Practice deep breathing exercises (using your diaphragm) at least 6 times a day. Lie down on your back and take a slow, deep breath. Breathe in as much air as you can while trying to expand your chest and abdomen (push your belly button away from your spine). Relax and breathe out. Repeat this 4 or 5 times. This exercise will help maintain normal movement of your chest, making it easier for your lungs to work. Do deep breathing exercises often.

Do not sleep on your affected arm or lie on that side.

And, stay well hydrated.

Please let us know how you're doing.

Kira

cycle-path · January 2012

Ellen, in addition to what Kira suggests, I have a pre-op suggestion. Take a pencil and stand in a doorway. Reach your arm way up in the doorway as high as you can, and mark the highest you can reach. (You can actually do this with the other arm, too, just for reference.) When you start to stretch your arm after surgery, you'll know how well you're doing because you can compare your reach to the mark.

I don't know if this makes a lot of difference, but I liked being able to track my progress during recovery.

kira66715 · January 2012

But Ellen, NO stretch through the axilla for at least 10 days--let those lymphatics heal.

this was written for health care providers, but I think we can all understand it:---

Post Op considerations:

Consider limiting stretch on the axillary area for 10-14 days post-operatively, as lymphatics have limited time to regenerate: NLN Conference Lecture, 2010, Jodi Winicour PT

From Foldi Textbook of Lymphology: Lymphatic regeneration occurs as the stumps of the afferent or efferent collectors of a removed node connect as the result of proliferation of the endothelium at the terminal portion of the damaged vessel. Regeneration of superficial vessels in dogs takes 4 days, and deep vessels in 8 days.

Have your patients limit their arm movement to shoulder height for the first 10-14 days post-op-to allow the efferent and afferent vessels to connect during the limited time of lymphatic regeneration.

Systematic review of early vs. delayed exercise has shown delayed exercise decreases seroma formation: http://www.ncbi.nlm.nih.gov/pubmed/15830140

A study in 2008, published in Physiotherapy, showed higher risk of development of lymphedema in women who had axillary node dissection and performed early vs. delayed exercise: http://www.lymphoedemaleeds.co.uk/Pages/Research.aspx

http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm

Learn from my mistakes: I started overhead reaching a few days post op, got a huge axillary seroma, a dozen axillary web/cords and was a set up for LE.

Plenty of time later to reach overhead.

Kira

ellentk · January 2012

Thank you so much for these great suggestions, Kira. I'm going to be VERY careful!

Thanks for the idea about measuring my reach, Cycle-Path. I'm going to do it.

My surgeon just emailed me and said she got clean margins but they were close and she wants to trim them more. I'm glad both will be taken care with one surgery. I'm slowly becoming more scared of cancer than of lymphedema. (lol)

Ellen

cycle-path · January 2012

Kira, what I gave Ellen was a PRE OP suggestion. Not post op.

kira66715 · January 2012

Cycle, I'm just so protective of the axilla post-op, and my LE therapist worked for Robert Lerner MD in NYC--the first LE doctor in the US, and he just hated "reach for recovery".

As someone who unintentionally harmed myself by rapidly doing stretches--and repetitive exercises, under the guidance of a LE trained PT...., and who had no post op guidance from my surgeon, I'm just a broken record on the precautions.

I actually saw a PT at my most vulnerable time--2 weeks post op--, she was Vodder trained, but angry at the LE clinic--had just quit to work for another gyn group, and had me stretching away and stressing the arm.....Literally found her on the APTA site over a weekend as I found my cording..

It's not common knowledge amongst breast surgeons or all PT's, how lymphatics heal, so after figuring out to protect the area, I just put it out there.

Ellen, it's a really rough time right now, as it all sinks in--let us know how you're doing.

Kira

ellentk · January 2012

Kira, Rough? Yes!! A perfect description.

Got to speak to my surgeon about the path report today. She said that even though the DCIS is extensive, she got all of it out with wide margins around most of it, there is just a small corner with narrow margins that she wants to trim more. She likes to get 5 mm, which sounds reassuring to me. After reading reports about local recurrence rates with EIC, I wondered if I was a candidate for a mastectomy. She did not think one was called for because there was no suspicious cells or activity in the area surrounding the DCIS or the tumor.

She also said that if I signed a "possible axillary dissection: she wouldn't take any unless the lab found that cancer had totally taken over a node. This made me feel reassured enough to consider signing. Especially since she said that going in a second time would be harder because of the scar tissue, making me think that a second surgery could increase the risk of LE.

What do you think?

Ellen

So I'm reassured and actually looking forward to what I hope will be my last surgery.

kira66715 · January 2012

Ellen, so she wouldn't do an axillary dissection unless one node was very involved--she sounds very reasonable.

The studies are showing that if only 1-2 nodes are positive, with a T2 or less cancer--and you're a T1b, the remainder of the dissection doesn't increase survival.

That was the Guiliano study and there are lots of threads about it.

Here's the abstract:

http://jama.ama-assn.org/content/305/6/569.abstract

Here's a reassuring study on EIC:

http://jco.ascopubs.org/content/26/9/1395.full

When is she scheduling the surgery? Hope it's over soon, and in your rear view mirror.

Kira

ellentk · January 2012

Thanks for the studies, Kira. I'll read them later. Taking some time off from the constant researching and decision making.

The surgery is scheduled for 2/3.

Ellen

ellentk · January 2012

Hi Kira,

I just got more of my path report. I'm ER+/PR+ (both high), HER2-, Proliferative Index: 2. My BS said this was very good news. I asked her why the Proliferative Index was so low if the DCIS grade was high. She said the Proliferative Index test was more sensitive.

I'm pretty relieved (down more than a few notches from totally terrified) and wondering again if I should decline an SNB. From what I've read, additional treatment for what I've got would be radiation and hormone therapy. Is there anything that an SNB would reveal that would change this?

Of course, I'll speak to my surgeon when she checks my incision this coming Tuesday. And until then I'll continue reading studies. Must have read more than 50 so far with aobut 15 bookmarked for reading tomorrow.

One study that seemed somewhat relevant, though I'm 5 years younger than the youngest woman studied, was "Can sentinel node biopsy be avoided in some elderly breast cancer patients?"http://www.ncbi.nlm.nih.gov/pubmed/19247034

The abstract doesn't discuss the characteristics of specifc risk groups but I think I can read the full text at the NY Academy of Medicine Library.

Ellen

Bogie · February 2012

I have been following this thread and Ellen's story. I am so impressed with all of your knowledge and learned from it. I just wanted to add my personal experience in regard to Ellen's question on test results picking up all suspicious areas on Ultrasound, MRI, Mammo, FNB, Core Biopsy.

I am evidence that the above test do not always pick up masses. Like Ellen I had 8 scattered microcacifications DCIS, all 8 were carcinoma from FNB. My BS wanted to do a lumpectomy. I had an MRI on both breasts and 3 more fairly large masses showed up. Did more biopsies and they were Benign. After months of tests, up and down emotions and the help of this board, I walked into my surgeon and said enough is enough, I want a bilateral Mastectomy. He was not going to take out any Sentinel Nodes in my case being only DCIS. He then pondered and said. However, this is the only opportunity I have to get the nodes out to test. I will take one or two only. (He said biopsies don't always catch cancer in the nodes, they can be right next to it and be missed, they need to be removed to be sure).

So in I went 7 weeks ago into surgery, he took 5 nodes out and told my family I'm cancer free and no other treatment to be done. I then got a call on Christmas eve, it was my Breast Surgeon telling me the pathology report showed the cancer was more advanced than they thought and found a 1.5 cm malignant tumor, and the other side showed some cancerous microcacifications starting. No test found this, not even seen while open on the table by my surgeon and/or the reconstruction surgeon. ( I had expanders put in).

I'm glad now I had a bilateral MX and reassured no lymph nodes involved. I am concerned about lymphadema and have been to a specialist for education on manual drainage and baseline. I do the stretching post MX tape from the American cancer society and this has helped keep things moving.

I have had to get blood draws for thyroid goiter and from Oncologist office and II allowed a blood draw on side where no lymph nodes were taken out, provided they did not use the turnakit. One lab told me they refused to take blood draw from my foot and said she was not trained for this. I have to get a special order from my Physician and get it done at the hospital. I allowed her to try in the arm provided no turnakit was used. She could not not get a blood draw after sticking me a few times without the turnakit. I need to get my thyroid tested and I walked out with no blood drawn and a huge bruise. Also not one nurse could take a thigh or calf blood pressure, they didn't know how...geesh now what?

I know my surgeon feels on bilateral MX, it's not the MX, it's only where the nodes were removed no needle pricks or BP taken. My Lynphadema Specialist just about fell over when she saw my bruised arm and band aid from blood draw. She feels you are still at 15 percent risk of developing LE on the side that no nodes removed from a Double MX. I don't want to take unnecessary risks.

Your thoughts, how do you get blood draws on foot? And how do you get the Doctors to even agree to it, it's a losing battle.

Sorry so long, you are all intelligent angels with your knowledge!

kira66715 · February 2012

Bogie, I work for a radiation oncologist, and recently we've had a number of women in the office with biilateral breast cancer. Some have bilateral ALND and most bilateral SNB.

I just talked to one woman about her risk and how she/we are going to handle it. After reviewing her risk, she made the decision to allow blood draws on her non-dominant side.

I talked to Binney about it--who is bilateral and has foot draws--and she said that f the woman made an informed decision, understood her risk, that it was reasonable. What she did not feel was reasonable was when women are not informed, or told they have no risk.

So, if you read the risk reduction behaviors of the National Lymphedema Network: it says to avoid blood draws, IV and blood pressures IF POSSIBLE.

The decision is if that is or is not possible.

One of the women who posts on this thread has LE in one arm and a SNB on the other. She is a nurse and has decided to allow bloodwork in her at risk arm--it's an informed decision from someone who lives with LE every day.

I have a much harder time with the women who have bilateral ALND--because I know their risk is so much higher.

You can get blood draws in the foot: the doctor has to order it, and you may have to bully the lab into drawing it--many will tell you it's not allowed.

Jane/Onebadboob is bilateral and has foot draws and foot IV's.

If you let them use your arm without nodes: limit tourniquet time, use a small needle--like a butterfly, they can only do one stick, and no automatic blood pressure cuffs and any manual blood pressure cuffs should only be inflated to a reasonable amount--not 200mm.

Hard decision.

Kira

Bogie · February 2012

Kira, What a nicely written summary on thoughts and suggestions. Thank you so much for the invaluable information. This is almost as hard a decision as when making the decsion on having a mastectomy vs lumpectomy.

Intersting, my Oncologist just phoned me to discuss which hormone therapy I am going to start on. So I took this opportunity to state my case on Lymphadema, and how they only get 15 min of covering the lymphatic system and lymphadema in med school. (not sure he liked that) I explained how I could still be at risk on blood draws and BP. He asked if I covered this with my breast surgeon because he should be knowledgable in this area, and that he even has a lymphadema specialist in his office so I'm sure he is greatly informed. I told him I did and he gave the green lite to have it all done on the side no lymph nodes removed. He said, well then you have your answer. I also told him that no one seems to know how to take my blood pressure on my calf or thigh, including his office. I've been to my Internist, Endocrinologist, ans Oncologist and not one could do it. He was just quiet.

I didn't expect to have to run into additional obstacles in my fight against cancer with the very people who are treating me. This is a bit unsettling.

kira66715 · February 2012

Bogie, but all too common. I faced rampant ignorance--no post op instructions, treatment with a supposedly LE trained PT who was actually harmful, a surgeon who was clueless and a rad onc who told me "radiation NEVER causes LE".

The help I got was from Binney and these boards.

I gave a talk to medical students who are doing an oncology elective this week on LE and they were flat out amazed: they asked me to come back every year as it was the first and only lecture they've ever gotten on the lymphatic system.

They listened for 90 minutes, so they got more than 15 minutes....

Kira

Bogie · February 2012

Good, they need more than 15 min! I also told him for those who get it some say it's worse than the chemo.

I don't understand why they don't take this more seriously. They just look at me liking I'm a ranting idiot causing trouble.

Can you take BP from the pump manual kind on your leg? They keep telling me it doesn't work, and it was a different kind I must have had at the hospital.

carol57 · February 2012

Bogie and Kira,

When I read Bogie's post, my first thought was that 15% for the non-SNB, i.e. mx-only side was too high. Then I checked the studies I have on file and well...I am SO disheartened! I too had bilateral mx, with SNB on one side (5 nodes). I have LE on that side, but the other side, so far, behaves nicely. So I am crestfallen to learn that:

Weiss, in an article dated 2007 cites 19% for modified radical mx [citing Schunemann & Willich 1997) (link to the Weiss article is http://www.lymphnotes.com/article.php/id/401/ )

The National Surgical Adjuvant Breast and Bowel Project (1971-1974) found 39.1% of 'total mastectomy alone' patients reported having LE at any time during the study, and 15.5% of this group reproted having LE at the last recorded measurement period in the study. [google 'incidence of arm edeme in women with breat cancer' to get this in pubmed]

I know that 'modified radical mx' may be more extensive than today's mx, and 'total' mx --not sure what that actually means compared to today's surgical procedure. And I know that the diagnostic criteria for capturing the incidence of LE is not standard between studies, so we have the ultimate apples/oranges problem in identifying risk.

Even so, I had assumed that losing only the tail-of-spence node when I said farewell to my non-SNB breast meant my LE risk was pretty close to zip. Guess I was not focusing on that aspect of my care.

For me, I'll be re-thinking the question of leg/foot blood draws/IV/BP. LE on one side is enough, thank you!

Bogie, thank YOU for posting your question. And Kira or Binney, if you are aware of better risk-incidence studies on 'just' mx, I'm cataloging these things into a library, so arms are wide open for more studies to add to my pile. I'd love to find a more recent one.

Carol

Bogie · February 2012

Carol,

It was 5-15% risk factor on the MX side that no lymph nodes taken out. You are the one who brought up an excellent point! I believe when that was written the procedures could have been different surgically. Let it be noted the PT that showed me the article was old, and she did go on to say most recent studies have not included that data. She personally said she would not take additional risk if you don't have to. I think that is why I came here for additional answers since labs, nurses and my Physicians are all fighting me on it.

Well I guess I can't finish my blood draw to check thyroid since my arm is so bruised after her poking away with the needle,and didn't get any blood drawn since they won't be able to see a vein now anyway. I just loved hearing the news from the Endocronologist telling me I have a 3.5 cm nodule and biopsie are not of great use on such a large mass because it still could be cancerous. Geesh I'm 6 weeks post op from my bilateral MX, thinking I need a break from all this. Sorry just had to vent.

carol57 · February 2012

Venting can be very, very therapeutic! Everything about this is so frustrating. Makes you simply want to scream!

ellentk · February 2012

Hi Kira,

After consultations with a MO and RO, and l-o-t-s of thought,I decided to go ahead and have an SNB when my surgeon re-excises to get a bigger margin on one corner. I am still torn about it, and wonder if the results will make any difference in my treatment, but at this point, I'd rather eliminate this bit of uncertainity. Of course I'll have the uncertainity of whether I'll get LE, but .... I'll do what I can to prevent it without driving myself too crazy.

I'll be having surgery on Friday, 2/17. And I should have the results of the Oncotype DX the week of 2/27.

Thank you so much for your help and guidance. I've printed out the exercises you suggested and set up my apartment so I won't have to reach for anything.

Ellen

ellentk · February 2012

I had my re-excission and SNB today. My surgeon took one sentinal node and a small node that she said was right next to it. Both were negative. I hope that the final report confirms this.

I noticed a bit of numbness and swelling in my hand (same side as surgery) after using my computer mouse. I did the opening and closing your hand exercise and positioned myself on pillows (as per the exercise above that Kira suggested) and it kind of got better. But I began using my computer again and it came back.

Is this normal at this stage and an acute reaction to surgery rather than the beginning of LE? Should I stop using my computer? I'm being very careful about not lifting my arm higher than shoulder height.

I have had muscluoskeletal problems in my arm and hand from computer use in the past, mostly tendonitis and minor strains, but usually manifest as pain, which I don't feel now.

Another question. I woke up from general anesthesia today feeling mentally energized. I was physically exhausted and mentally slow from the sedation I got with the lumpectomy but the GA has had the opposite effect. Perhaps because less tissue was removed? More than 9 cm was taken out during the lumpectomy. Googled this, but only found two posts about it and no one explained. Just curious. I'm thrilled that it probably won't take me three days to recover my strength.

I guess the best thing about knowing my node status (aside from being reassured) is that I will have no second thoughts about declining axillary radiation.

Sorry about any typos, I don't have the patience to proof this message.

Ellen

kira66715 · February 2012

Ellen,

Congratulations on the negative nodes!!!

Computer use can cause problems due to ergonomics, and it sounds like you've had them before, so right now while you're healing and nerves have been aggravated, it sounds like you just need to take it easy.

General anesthesia as a tonic: very interesting.

One last thing: I work in rad onc, and the planning is very individualized, and how "high" the tangents go is individualized, and the level one nodes get some radiation no matter what--you can talk to your rad onc about making sure the plan includes the least amount of your axilla possible.

I only found out from the radiation therapists when I got rads (didn't work for a rad onc then....) that my field was fairly high up--and I had LE before rads....I do wish I'd spoken up, but I was in so much shock, I wasn't prepared.

You are very prepared.

Ask the modality: IMRT vs field within field vs 3-D conformational and ask to see the amount of radiation to be delivered to the axilla--there are doseimistrists and PhD physicists who are all involved in the planning and they have the documents.

Kira

ellentk · February 2012

Kira,

Thanks so much for your reassurance and advice (and your congratulations). I'm typing on a more ergonomically setup this morning and much of the swelling and numbness is gone. I'll call the LE therapist I saw and ask her advice too, and my surgeon and Mei Fu, who's running the clinical trial about LE that I'm in (a gene study). Yes, I'm prepared, but I don't think knowledge directly protects the lymph system <g>.

I'm also throwing various complementary therapies at this. I had reflexology before my surgery and getting it again today. I asked the reflexologist to work on the lymph reflexes. I'm a reflexologist myself and do a bit each day, but it's not that comfortable to do self-reflexology. (I'm a massage therapist with certifications in a lot of different types, including two from Sloan Kettering for cancer massage and a Reiki master.) And I'm taking lots of arnica.

Thought I was going to really need those supplements I bought to process the anesthesia from my liver, but I guess not. I slept about three hours, partly trying to get my arm elevated and not sleeping, but mostly because I am still really wired. I think the reflexology will relax me some. Of course trying to set up a win7 and xp network is also .... stimulating.

Thanks too for the advice about radiation. I met with Silvia Formenti at NYU when deciding on the SNB. She's well respected and I liked her. I'll ask her about the different types and insist on no radiation (or as little as possible) to the axilla. Speaking of radiation, you're probably aware of the study this past week about how it can increase the strength of cancer stem cells. Scary but radiation isn't 100% effective, and this is likely one reason why. And it can give scientists a new way to make it more effective: http://www.sciencedaily.com/releases/2012/02/120213185115.htm

I'm so sorry that you got LE., Kira. It's so hard to make these decisons under all the pressure and uncertainity we face. I hope your case is controllable without too much effort and mild.

Thanks again for all your help.

Ellen

carol57 · February 2012

Ellen, Just a thought on the computer mouse problem--can you change the angle of your wrist from time to time? By that I mean, send someone to an office supply store to find you two different wrist supports, and then change positions periodically by switching from one wrist support to another, and trying without, etc. By wrist support I mean a pad that slides around on your desk surface (or tray or whatever you're working on). I'm on my computer nonstop for work (not to mention all this LE research!) and I find that changing out the angle of my arm and wrist every so often makes a big difference in keeping numbness at bay. (Suspecting carpal tunnel for some time now, but want a holiday from all things surgical for a while, so choosing to deal with it instead of fixing it, for now). --Carol

ellentk · February 2012

Hi Carol,

Thanks for your suggestions about my computer setup. My old computer is on a desk that's too high. But I just got a new laptop and can use it on a desk that's the right height. Once I move all my files and programs to the new computer the ergonomic problem will be solved. I had a problem with severe tendenitis back in the 1980s due to poor computer use and know what I'm supposed to do, I just haven't been paying much attention to that lately.

I hope that your computer problems get resolved.

Ellen

ellentk · February 2012

I had a follow-up visit with Mei Fu for her gene study on LE today. She said that my risk is very low and there wasn't a change in the size of my arm. I'm going to meet with the LE PT this week too to get her evaluation and advice.

I've mostly followed your advice, Kira, about not reaching overhead. I say mostly because I'm not in pain and sometimes I just forget. I catch myself each time but I'd say in the past week and a half I've probably raised my arm higher than shoulder height about 10 or 15 times. I'm going to continue trying not to raise it until Friday, 2 weeks after surgery.

I still have occasional feelings that could be LE or a strain or nerve sensation from poor or too much use on my computer or post surgery effects. I guess time will tell.

In a few weeks I start radiation. Time to research that. Kira, you said in an early message that "your field was fairly high up." What does that mean? Closer to your head? What is the significance? Thanks.

Ellen

kira66715 · February 2012

Ellen, did Mei test your genes? How did she determine the low risk?

I'm going to see her in a couple of weeks, and didn't know how far her study had progressed.....

The field in radiation covers the "whole breast": starts at the sternal border, goes back to the arm pit and down to below the breast--the "high field" is how high up they go into the arm pit, and the level one axillary nodes sit along the border of the breast and do get some radiation.

The radiation therapists showed me that the field went to the top of the head of my humerus--pretty high up. If I had to do it again, I'd ask the rad onc to be sure to avoid as much of my axilla as possible.

Does that make sense?

Kira

ktym · February 2012

What the heck Kira, they essentially caught up to the level III nodes? Some supraclavicular? Why did they do that after a negative sentinel node biopsy?

ellentk · February 2012

Hi Kira,

Mei is testing everyone's genes in the study...results at the end. She used other markers to evaluate my risk, like BMI, current levels of things with unfamiliar-to-me technical names which I can't remember. The study just started in January.

Thanks for the explanation about the field. It's very helpful.

When you see Mei, please tell her I said hello and tell her how helpful you've been to me.

Ellen

Studies on SNB?

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