refused lymph node removal?

diplomom08

This may be a bizarre question, but has anyone refused a lymph node removal during surgery?  I have only just come to terms with the fact that my breast will have to be removed (I am well aware of risks of not removing).  I am now extremely concerned about Lymphedema and frankly, cannot come to the conclusion that removal of the lymph nodes is the best option.

(Yes, I realize most people would jump to have a positive one removed...however...)

I should also add that it seems very likely that I will be forced into both chemo and radiation.  Given that, I am curious if it is worth risking lymphedema when I am going to have such intense follow-up treatments.

 Last, but not least, I am tentatively scheduled to have surgery in two weeks.  I had a PET scan last week and there is no evidence of any spread, to include into the lymph nodes.  I have no problem with testing the lymph nodes, but I am very fearful of lymphedema, having read so much about it.

 Would also love to hear from anyone who had nodes removed and had no issues...or perhaps even very minor issues.  This whole time has been extremely stressful for me, and I am pretty much ready to crack from the stress of decision-making.

Thank you in advance!

hmm

I had SNB and they removed two nodes. This was two years ago and thankfully I have not had any issues. You may want to talk to your doctor about SNB as there is far less risk of lymphedema with that.

Wishing you the best,

Pat

debbie6122

I also had SNB (sentinal node biopsy) if the first nodes are positve they will remove a few more to see if there is more ( i had 6 removed) the rest were neg so they ddint have to remove the rest of them, i had no problems either- us/mamo never picked up the pos node, so it is a good idea to have thme checked and removed, you shouldnt have any issues with lymphdema, and pretty much lymphdema is managable if you can go thru surgery and chemo you could certainly get thru this, i will keep you in my thoughts and prayers for b9 results on the nodes! And will be thinking of you during your mx (((((((((hugs))))))))))

imbell

Had a lumpectomy, (5 nodes removed)  mastectomy 4 tx of chemo and 20 rads. Had a local recurrence 18 months later. Would be happy if they could operate but the surgeon basically says they can't because in her words my arm would fall off. I have nodes in the sternum, clavicle and under arm. No lymphedema.

ruthbru

11 nodes removed, chemo, radiation....no problems.

redsoxfan

Hi, diplomom08.

I was very worried about lymphedema.  The surgeon said the usual was to do an snb during the excisional surgery and, if the node was positive (path lab during surgery), to do a more extensive dissection.  I told her that she could do only the snb and gave her permission to take any nodes that, in her professional opinion, seemed suspicious.  She took 4--there was some "clumping."

Results below.  Your body.  Your choice.   

Good luck and God bless us all.

PS  Make sure you get arm volume measurements before the procedure.

comingtoterms

Hi, diplomom08,

I had 27 lymph nodes removed, and other than still being numb in a few places, remain lymphedema- free and proud!  I recommend yoga and pilates to keep you limber.

Tammy

jan508

Had DMX with SNB and 2 nodes removed (negative).

I have some soreness but I only had my surgery a month ago.  Getting range of motion back slowly but surely.  No swelling at all.

Good Luck in your decision

Jan

LuvRVing

I had 4 nodes removed for a Sentinel Node biopsy.  No problems at all and my surgeon told me I am at very low risk for lymphedema. 

 With a 5 cm tumor, have you considered doing chemo prior to surgery (neo-adjuvant)?  If it shrinks your tumor (highly likely) your surgery would probably be much easier. 

Michelle

rgiuff

Make sure your surgeon knows how to do Sentinel Node Biopsy.  Not every surgeon has the skill yet for this, but it is quickly becoming the standard of care.  It's worth the extra effort to seek out a surgeon who is experienced in this procedure.

And there has also been discussion here on BC.Org regarding this issue.   If you do a search, you will find posts from women debating this very issue.  If I were in your position, I would probably also want to refuse Axillary node dissection, especially if I knew I were going to have chemo anyway, which theoretically should destroy those cells in the lymph nodes.

cbm

I had all of level two removed (total of 14) with only one turning up positive.  I had fears exactly like yours, as my mom had had a radical mastectomy in 1970 and had severe  permanent painful and disfiguring lymphedema.

I opted for mastectomy, in part so that I could avoid radiation, which I was told could increase the likelihood of LE.  I began physical therapy immediately after my drains were removed to massage the area and diminish scar tissue formation, stimulate lymph activity, and reduce the likelihood of severe LE.  I continued pt for as long as the insurance company would permit.  

I have very mild LE, from time to time.  I carry neosporin and bandaids just in case, and I travel with a sleeve and gauntlet in my handbag.  I had all my rings resized.  I reduced the size of my handbag, I don't carry it on that shoulder, and I leave the heavy lifting to my husband.

I tried to talk the surgeon into only removing level one but I was not successful.  I know one woman who went to a general surgeon who only removed level one, and her onc sent her right back for the rest as soon as she was done with chemo.  She does not have any LE, and she did have rads too. 

Warmly,

Cathy 

lago

I had 10 nodes removed from the left and sentinel on the right. The tumor was 5.5cm on the left. My surgeon was very concerned there was a micro-invasion in the nodes on the left even though the  MRI and the physical exam indicated there wasn't anything in the nodes. The only way he would know for sure of a micro-invasion was to remove the level I (10 nodes).

So far no lymphedema. I do have sleeves/gauntlet to wear on an airplane for prevention. Also you can get lymphedema by just having your breast removed (according to my surgeon). As others have mentioned your risk of lymphedema is less with sentinal node procedure.

Your risk may also be less if you are thin. In my case I am. There are also many things you can do to prevent lymphedema. 

You should discuss your risk factors with your surgeon.

Do I regret having the 10 nodes taken out on the left. No I don't. I would rather deal with this risk then some of the risks associated with radiation and not knowing if there is a micro-invasion. Having such a large tumor, grade 3 (in my case) is nothing to fool around with. While there was no guarantee that I wouldn't need radiation not knowing it was in the nodes would have made it a sure thing. BTW I was in a gray area for radiation but my rad onc felt it wasn't necessary with all my other aggressive treatment and no node status.

If you haven't read this check it out:
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

Also read up the risks with radiation. Radiation to the lymph nodes can also cause lymphedema.

BarbaraA

I hade SNB (4 were clumped) and told the surgeon before, that would be it, no more. One had a micromet (which they didn't know until path was in). Rads took care of any stray cells. So far so good.

Luah

I had 4 nodes removed during a Lx and SNB.  On pathology, one showed isolated tumour cells, another "micromets."  Even though I was getting chemo and rads, I opted for an ALND to remove any other cancer. Ten more nodes removed, all negative. No problem with LE to date; I wear a sleeve when flying as a precaution.

Be aware that LE risk increases with radiation (as well as surgery). 

ruthbru

Almost anything can cause LE, really. A blow to the chest in a football or soccer match, a fall, a car accident....you name it. But it is rarer than not; and do not let the fear of it rule your choices in your cancer treatment. The main thing is to get rid of ALL cancer cells, if that doesn't happen we won't be around to worry about LE.

Susie123

I had SNB with my bmx..No LE problems at all. I have flown too, and still no problems with LE.

KittyDog

You are still at risk just because you will have that tumor removed. There are lymph vessels all through your breast.  Chemo and radiation also can damage lymph nodes. 

I had 5 lymph nodes removed.  He was suppose to take level 1 and 2 but chemo had damaged the rest of my nodes.  I do have mild LE but it was set off by doing physical therapy for a torn rotator cuff.  PT didn't know anything about LE and had me doing the wrong things.

diplomom08

Thanks to everyone for the replies.  I do believe she is planning SNB.  Thank you!!

ruthbru

Best of Luck! Ruth

diplomom08

Thank you!  Surgery is schedule for November 11, fingers crossed all will go well...

TonLee

I just went through this last week.

Had a mastectomy/reconstruction.

I didn't want the surgeon to take my axilla.  I am ER/PR/Her2+, so I know I will get chemo and hormone therapy for sure anyway.

I read a study (Z0011) that came out in Sept and decided to forgo axilla dissection since it doesn't add anything to survival or risk of recurrence but does increase risk of Lymphedema.

My surgeon did not agree with my choice.

But he performed the SNB and sent the nodes to the lab without looking at them in the ER.  There were 4 of them (and 2 in the breast tissue that were clear).  Two of the SNs were macro, one micro, and one isolated tumor cell. 

Here is the only issue:  they can't really stage me.  Because they didn't take the axilla, they can't tell me if it spread into my lymphs aggressively, or stopped at the SNs.

No big deal as far as treatment goes because it stays the same.  However....

Yesterday they staged me Stage IIIA using just the 4 SNs.  But then they re-staged me as a IIA since two of the SN were not macromets and what was there was under 2mm each (in the micromets and Isolated tumor cell lymph).

What does that mean?  Well, it means I can't know my stage for sure. 

Problems from that include...... If I am a stage III then they would check me for mets in the rest of my body, and be more aggressive in checking. 

But since they say I am II now, they aren't checking for mets unless I have "symptoms." 

 My treatment doesn't change (except add radiation since cancer is in the SNs), but they won't be running any extra tests to determine mets.

That's it.

I could lift my arm above my head the morning after surgery and haven't had any problems.  Once my drain is removed I will be back to exercising.  My arm is fine. 

AnnieFletch

During my lumpectomy (Sept '07), I had 4 nodes removed - all were neg.   Following chemo, in Feb 08 I had a bi-lateral mastectomy (voluntary, since the cancer was extremely aggressive).  I haven't experienced any lymphedema in my arms, but have had a little in my torso.  I wear a compression garment (like a tank top, for the torso) often when I sleep, & that keeps it under control.  I also don't wear a bra around the house, & that helps to prevent it, too.    

Fearless_One

Yes, I had axillary node dissection and no problems since.   I only had 2 positive nodes, but guess they have to take everything out just to be sure once your SNB comes back positive.

0000000

Hi Diplomom,

I refused to have axillary node disection with my lumpectomy ... on the original consent form it read "lumpectomy plus SNB with possible full axilary node disection". I crossed that part out on the day of surgery and told the surgeon that I only wanted the SNB.  I didn't want the uncertainty of  possibly waking up with the drain and all that.  I knew that if they were positive (the sentinal nodes) that the axillary nodes could be removed later if necessary.  Anyway, I was somewhat surprised to read on the path report, following surgery, that 7 nodes (all negative) were removed... 2 sentinal nodes and 5 others. I am dreadfully afraid of lymphedema and am really unhappy that so many nodes were removed.   It is your body and you call the shots.

Best of luck to you!

Luah

elsie: Did you discuss this with your surgeon?  Sometimes there is no clearcut SN and the dye goes to several. Or the surgeon becomes suspicious of some nodes very close to the SNB and removes them to be safe. (Full axillary dissection usually involves more than 7.)

lago

Elsie I had 4 sentinel on the right and 10 (level 1) on the right. I pushed back on the sentinal but my PS explained that even with just the breast removed I could get lymphodemia so I went with it. My risk is low but you do need to take precautions. I got a script for glove & gauntlet for both arms. My BS recommended wearing them when I fly. I also got a sheet with other info to reduce risk.

Here is another place that will let you know what to do to decrease your risk.
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

TonLee

My Rad Dr gave me some literature that says the lifetime risk for lymphedema because of Rads is 5%.  That is much lower than the 35-50% of women (studies vary), ten years out, who have axillary dissection with LE

Hope everything went well!.

0000000

Hi Luah,'

Thanks for your response.  I didn't discuss this with my BS because she just handed me the full path report at the follow up exam and I hadn't had a chance to read over it.. also she never mentioned the word lymphedema ..I had to find that out on my own.  I don't know whether to schedule another office visit with the BS or just write a letter detailing my concerns.  My husband and I both saw photos of the lymphoscintigraphy and the radiologist said the sentinal node was identified beautifully..no other nodes lit up.  Also, the BS never came in following the SNB surgery to tell me how many nodes she took or whether they were negative.  I heard the tech say, as I was still half awake going into the recovery room that the nodes were negative which is what I suspected due to the MRI and clinical exams showed no evidence of lymph node involvement (I know that isn't conclusive but it does lean in the right direction).  So I assumed only the SN was removed.  My BS knew I was adamant about not removiing other nodes but did it anyway so I am somewhat annoyed at that.  I know I should look on the bright side but it is my body and I don't like being either uninformed or having my wishes set aside. 

0000000

Also, I have read papers that my BS has written stating that the risk for lymphedema is 2-3% following SNB and I thnk that should have at least been part of the pre-surgery conversation. It wasn't . I sometimes feel like it's me that is the cancer expert and not the professionals.   I guess they do this so much that it is just routine but it isn't routine for the patient.

Luah

Elsie:  In my experience surgeons tend to underplay the risk of LE.  I have a terrific BS who did discuss LE with me, but rather fleetingly. Surgeons come from the perspective of cutting out a potentially fatal disease and tissue at risk of that disease, so I understand why LE is not first on their radar screen. However, surgeons do have an obligation to follow up with patients post-op, and she should have explained why she took out so many, especially as you had discussed your preferences.  I would definitely go back and tell her you need to understand why so many were removed; and if you're still not satisfied, follow up with a letter.  Press for a referral to a LE clinic too - so you can be examined and trained in preventing/managing LE.

You're right... you are your own cancer expert!  And, since they do this everyday, doctors do forget sometimes how life-changing this is for the patient. That can be very distressing.

KristyAnn

I had a left mastectomy and a SNB with one node reomved- after surgery they found an intramammary node (completely within the breast) that was positive. My onc wanted me to have a full axillary dissection but I refused it- had chemo and rads (even after mastectomy)- no LE issues