Remove the rest of the lymph nodes or rely on rads?

rabbit

I am in a big dilemma, I had a lumpectomy on the 5th of Jan. they took 2 nodes, first one showed a 2.5mm tumor the second was negative. I saw my BS today and she said that normally with the macrometastasis in the lymph nodes, and doing neoadjuvant therapy, they would go back and remove the rest of the nodes.

After talking to her for a bit, she said she wanted to call my RO and get her opinion and when she came back in the room, she said my RO was very confident if there was anything else in my lymph nodes, that she would get it with rads. My BS said that there was approximately a 15% chance there was more cancer in my nodes, that it can skip a node, so the positive node didn't mean there was no more cancer.

Now, I see my MO Wed. and then meet with my RO the following Monday, the 23rd of Jan. I am so confused. Do I trust the 3 doctors with my life and hope the rads will get it all, or do I go back into surgery, knowing I am a HUGE risk for major lymphedema, and remove all those right axillary nodes?  

I was told a PET scan will not show any growth less than 1cm and we know since I did chemo first, if there's anything there, it's well under 1cm. Is there any scan that will show lymph node involvement that maybe only 1mm or 2mm? I have so many questions, do I get a 2nd opinion from another MO or RO? 

I feel like I just did almost 6 months of chemo, surgery etc. and now have a huge hurdle to jump. I either trust the docs and go with rads and pray it kills anything that may be there...or I go aggressive, remove all those nodes and possibly for no reason.

There must be a way to see if there is in fact any involvement, even if it's micro...

Help  

J9W

Hi Ellen,  wow what a place to be in. I'd be very reluctant to give  them all my nodes because of my fear of lymphadema. Of course, I fear cancer more but honestly, even if I let them take my nodes, I'd still have the cancer fear and then I'd have to have that plus lymphadema. If taking and testing them gave me a 100% reliable answer it might be worth it but I don't feel there are any of those answers out there. Hopefully someone else who's gone through this particular issue will come along and give you some guidance.

pupmom

I never faced this terrible dilemma. When my doc found 2 positive/out of 4 sentinel nodes, she took out 17 more axillary nodes, all clean. My feeling is that, at least in my case/ with my surgeon, she felt that radiation would not be sufficient. Otherwise she would have sewn me up after taking the 4 sentinel nodes and given me the option for rads or more surgery. Of course everybody is different. Best of luck!

lalisa

I have not been in your situation, but my feeling is that you can trust the opinion of the Drs. All 3 agree that rads is enough. It sounds similar to me to the way lumpectomy with radiation is just as effective as mastectomy to prevent recurrence. Of course, some women will choose mastectomy anyway. But if all the Drs agree that there is no reason to remove all the lymph nodes, I think you can take their advice and avoid the lymphedema risk. So sorry you have to go through this.

SpecialK

rabbit - sorry you are in this situation, but why do you feel you have greater than normal lymphedema risk?  MRI failed to show my micromet in the SNB and a 6mm node farther up the chain.  My BS and MO both insisted that I have axillary node dissection prior to chemo, didn't really give me an option.  I am grateful for their insistence because that 6mm node was found.  I was not confident that chemo or rads would have been enough to get rid of a node of that size.  You have seen that you had a 2.5mm node after neoadjuvent chemo.  I would be a little nervous about more of that size, but I guess it depends on how much trust you have in your docs.  Keep in mind that each kind of doc likes to do what they specialize in and believes that whatever their methodology is - it works.  The only surefire one to me is the surgery.

coraleliz

I had MO saying I should have an ALND but my BS & RO disagreed citing recent studies indicating RADs just as effective. My decision was RADS instead of ALND. This change in thinking seems to be less than a year old. Not all docs in agreement but you have 3

rabbit

thank you all so much for your responses, I need all the input I can get, it's a major decision. 

SpecialK, the reason they know I am at HUGE risk for lymphedema is because I had a blood clot in my external jugular and got lymphedema from that...and just taking out the 2 nodes, I have a pocket of fluid under my arm, I have a little water retention in my feet off and on for years as well. I am just the perfect candidate for it.

I think after seeing my MO Wed. and my RO the 23rd, I will then see another MO and get a 2nd opinion...a doctor that has nothing to do with my "group of oncologists". If that one agrees rads are the way to go, I may go with it.

I still don't understand how there is no test to find if other nodes are involved without operating.

thanks again all. I would be curious to see if anyone knows statistics of more nodes being involved if the sentinel node was positive and the 2nd node negative. 

Hugs to all! 

J-Bug

http://community.breastcancer.org/forum/91/topic/776527?page=1#post_2804807

Rabbit: You might be interested in the link above. It is a thread that I had started before surgery when I had a similar question. The biggest differences are that A. my decision was all before surgery and B. I have never had any sign of cancer in my nodes.

I wish you the best. I know how tough this decision can be. I think I might be tempted to do it, relying on the thought that saving your life and preventing further spread comes before lymphedema. However, this is your decision, not mine. When you read that thread linked above, you will see in my last post in it, that my surgeon was also finding that it is more common thinking now that rads and chemo will be enough. 

rabbit

hi J-bug, I can't get that link to work....I would like to read it. I am seeing my MO in 2 days then my RO in a week, I will have to make a decision at that time. I am trying to gather all info possible til then, thanks to everyone for voicing their opinions and experiences. Love you guys! 

ProudMom_Wife

Hi rabbit - similiar situation, but also different. I was clinically node-negative going into my BMX, and the two positive nodes found were not found until the final pathology came in, so I had to decide about the ALND. I decided to decline for these reason which applied to my situation:

a) Although 3 sentinel nodes were removed they also ended up taking an intramammary node and axillary node, both negative.  

b) Only the first two sentinel nodes were positive, the third was negative. I know it can skip, as SpecialK had that experience.

c) Had a 9% probability of additional lyphm node involvement.

d) Although I had 9mm and 6mm of cancer in my lymph nodes, I had no evidence of LVI.

e) I read a study published in Oct. 2010 http://www.medpagetoday.com/MeetingCoverage/ESMO/22750 which basically said "Axillary radiation therapy may control the axilla in sentinel lymph node-positive patients as effectively as complete axillary lymph node dissection, and could become an alternative treatment of the axilla for patients with positive sentinel lymph nodes".

Since then additional studies have been concluded and published which discuss whether or not ALND is needed in certain cases.

http://jama.ama-assn.org/content/305/6/569.
Among patients with limited SLN metastatic breast cancer treated with breast conservation and systemic therapy, the use of SLND alone compared with ALND did not result in inferior survival.

http://jco.ascopubs.org/content/29/34/4479.full
"In conclusion, on the basis of the results of Z0011, a significant proportion of patients with one to two positive SLNs and BCS can safely forego ALND. The majority of these patients do not need to be subjected to the short-term and long-term morbidity of ALND."  

So based on my pathology and the other treatments I was going to do, chemo and radiation of the axilla and supraclavical, I decided that it was not worth the risk for me to have the ALND.

Everyone's situation is different. If you are unsure of the recommendations of your doctors, please go and get second or third opinions, and discuss recent studies. You need to be comfortable with the decision you make.

Good luck.

rabbit

Hi ProudMom, thanks so much for this info, it's awesome. I am going to get my 3 doctors' opinions and see an oncologist not in my group for a 2nd opinion. 

reesie

Ellen,



Just one thing you might want to consider - rads to the nodes are a risk for LE as well as surgery. My RO had me see a LE therapist before I started rads and I wear a sleeve every day during treatment as a preventive.



It doesn't make the decision any easier but it is something to consider and discuss with your docs.

lago

I do believe some of the newer studies show there is no increased benefit for removing nodes if you get rads and your tumor is less than 5cm:

Lymph Node Study Shakes Pillar of Breast Cancer Care
By DENISE GRADY
Published: February 8, 2011 

BTW I had 10 nodes removed from the cancer side. All clear but I do have mild LE. You can get LE with rads too so you're not completely out of the woods for LE risk. So far my LE is not bad.

Jennt28

I went into my surgery already having made the decision to not have ALND even if my one sentinal node had involvement based on the studies cited above. Mine did end up with involvement and I have stuck with my decision.



Met the RO today for a prelim appt since I won't start rads until Jun/Jul. Agreed on the axilla rads but not the supra-clavicular fossa based on the SCF rads only giving a 3% drop in likelihood of local recurrance.



I'm happy with my decision, but others would make different choices I'm sure.



regards Jenn

Jennt28

Forgot to say... RO did give me an approx likelihood of between 8-10% for developing LE from the rads.... Still less than if I'd had the ALND.



Jenn

coraleliz

I was told an ALND would give me a 30% lifetime risk of LE. I can't remember how much of an increase with RADs.I want to say <5%? I also have read that some cancer centers suggest the RADs for lumpectomy patients but ALND for mastectomy patients with positive SNB.

Here is a link to some info from a NP at John Hopkins http://health.yahoo.net/experts/breastcancer/latest-sentinel-node-biopsy

"A new standard of care is suggested

A new research study was also completed last fall, and its results have  led experts to strongly consider a new standard of care that would  result in the following:

• If a woman is having a lumpectomy and she has a positive sentinel node, then no additional nodes would be removed, with the understanding that the radiation therapy that is  nearly always done following lumpectomy surgery--including radiation to  the armpit area--will be given without fail.
• If, however, the patient is undergoing mastectomy surgery and her sentinel node is positive, then an axillary-node dissection  must be done. This is because a woman having a mastectomy is not automatically given radiation therapy as part of her treatment. "

This change in thinking has really just come about in the last year. I had a BMX & had RADs instead of ALND, outside the new "box".

lago

coraleliz you also had a tumor less than 5cm. Some women don't realize this new standard of care only applies to tumors less than 5cm. Also I think that LE stat refers to full ALND. I only had level 1 so my risk was lower, but still got it.

ProudMom_Wife

Good point reesie, I too saw an LE right after my BMX, should have done it before but didn't know about it. I also wore compression sleeves everyday through rads and then slowly was able to reduce the wearing time after rads were done. Only wear them now depending on the activity I am doing.

rabbit

you all are giving me such great info to ponder on, thanks so much!! I am reading, and reading and reading your links, articles etc. 

reesie, I will keep that in mind, I forgot that the rads could cause some lymphedema, I will find out more when I speak to my RO. I see the MO tomorrow and am so anxious to pick his brain about this!

The articles and studies you all of given me info on are making me want to stick with my first instinct, to let rads get anything that may be there.

I do fall in that "under 5cm" category so I'm feeling more confident with this. I will let you all know what I decide, what the MO tells me and so forth. Please keep the info coming and anyone else that reads this and has a similar experience, please share!!

hugs to all! 

Artemis

Hi, rabbit ~ I was in pretty much the same situation, and I decided against having more nodes removed.  I had only 1mm of micromets, and I was going to have rads anyway because I was Grade 3.  

The BS wanted to cut; MO and RO thoughts rads would be enough.  With two of three doctors agreeing, and with my VERY high fear of lymphedema, I went with just rads.  FOR ME, this was a good decision because even if the nodes were removed there was no guarantee that the cancer wouldn't come back.

Since then (June 2009) I've had four scares of recurrence, but I don't regret not having the extra surgery.  As I said, it was a good decision FOR ME, and I'm at peace with it.     

I wish I could give you a definitive answer.  I wish we could know that doing this, that and the other would be a sure thing.  But that's just not the way it is for us.  I'm very sorry that you're facing this, and I pray you can reach a decision with which you're comfortable.

Love, Artemis 

rabbit

hi Artemis

thanks so much for your story, very similar to me for sure. I am much more comfortable with the rads option after seeing my MO today he reassured me that my survival rate in 5 yrs is about 95% either way.

Now I find out I have to get my ovaries taken out and if I want, a total hysterectomy....I remember this being mentioned early on in my dx but forgot about it   so now, ovaries or the total? My MO said the ovaries were important, not the uterus so much..another dilema! LOL 

J-Bug

rabbit: I fixed that link above. Sorry, I had not marked this thread in my favorites and lost track of it.

I am sorry that you have to make this next decision. Are you BRCA+? I thought that my MO told me that oophectomy and hysterectomy were not beneficial unless I was BRCA+. Am I remembering this wrong? I was ready to do it and he said that it would not help my prognosis. 

rabbit

hi J-Bug, I am BRCA negative. hmmmm, I would like to hear others on this, confused now LOL

I will check out that link now , thanks!

jennywong88

Hi my name is Jenny Wong from Malaysia. I just had surgery on 27 Dec and had similar encounter. My BS removed 2 lymph nodes and found my sentinel node was positive and the other node was negative. However, for precaution reason, he removed another 16 nodes during the surgery and they were tested negative. The side effect after then is manageable although numbness till now but I can move my hand here and there. I guess that so long I continue doing exercise, it would be fine.  

J-Bug

So sorry rabbit! I am confused about that one as well. I originally thought that it was just an ER+/PR+ thing...

rabbit

hi jenny! Yep, we are very similar with dx as well, ER+/HER2-  I was told I was a stage IIa after surgery, but presurgery IIb. and we both had the first node positve and second negative. My BS and and MO had discussed what they would do if during surgery they found a positive node...and they decided if the second was negagtive to leave mine and go for rads. So it's up to me in the end, but I'm pretty sure I am going to go with rads, I see the RO Monday and will make sure I feel very comfortable with her getting anything that maybe lingering. You are right, it's manageable and some people don't get it too bad, I wish you the best

J-Bug, don't worry, I get confused easily LOL I am going to ask this gynecologist oncologist tomorrow and will let you know what he says!

Hugs to all!  

jennywong88

Hi Ellen, I'm a bit confused. I noted that u did chemo since June 2011 then lump in Jan 2012. Wondering why chemo done before lump (unless I've been misled). I'm going to start chemo on 30 Jan but BS in his opinion suggesting to do Onco type dx and based on the data, he said chemo may not benefit me. My lump is 1.2 cm. Oncologist thinks otherwise. Logic thinking is to do chemo as it outweighs the risk.

  

Artemis

Hi, jennywong ~ I'm not Ellen, but I can tell you that I had chemo before surgery because my cancer was Grade 3.  This means it's growing very fast, so some oncologists give chemotherapy first in that case.

Since Ellen is Grade 3, too, I'm guessing that's the reason she had chemo first.  

Did you have the Oncotype test or are you saying the BS has just suggested it?  What does your oncologist say?

Artemis 

lago

Artemis that isn't the reason. I too had grade 3 but had surgery first. I even asked about it. I do believe if you have mets or definite node invasion they are now doing chemo first. I'm not so sure they would do chemo first for someone they are not sure about node invasion unless they do a sentinel before the do chemo.

I think it's a bit more complex and might be based on several factors. I think if you have mets it allows them to see if the chemo is working. If the tumor is removed there is know way of knowing if you are on the correct chemo.

Artemis

lago ~ Well, I didn't have mets and we didn't know about my one node until after surgery (all the scans showed negative nodes), so if there was some other reason besides my Grade 3, I don't know what it is.

And I didn't say that everyone with Grade 3 has chemo first.  I said >>some oncologists give chemotherapy first in that case.>>

All I know is I saw the BS first, he said he thought I should see the onc and have chemo first because the cancer was Grade 3.  I saw the onc, he agreed with the surgeon, and I had chemo before surgery.  

Artemis 

lago

Artemis I think it was because grade 3 and it was so big. They do give chemo first for big tumors that's why I asked why I wasn't getting it first.