Prophylactic Bi-Lateral Mastectomy Question

[JPL19]

I'm scheduled to have a proph. bilateral mastectomy in a few weeks.  I have a significant family history of breast cancer (mother and maternal grandmother), but no gene.  I am 38 years old with dense breasts.  I had a biopsy for a 1.2 cm area of concern (birads 4) in my right breast found in an MRI, but an ultrasound-guided biopsy was thankfully negative.

My surgeon tells me that she will do a sentinel lymph node biopsy when she does the surgery.  I've expressed my concerns about lymphedema.  She assures me it is only a 5% risk.  Again, I'm concerned as my mother developed lymphedema after her mastectomy.  I met with a second surgeon for a second opinion.  That surgeon would NOT do a sentinel lymph node biopsy though that doctor tells me it is not uncommon.  Problem is, I really, really like the doctor who wants to do the biopsy and not so crazy about the doctor who would not do it.  

That being said, I've scheduled the surgery with the doctor I like, but with the biopsy I'm concerned about.  I have another appointment with the surgeon before the surgery.  I'll talk to her again about my concerns about the biopsy and the true need for it considering my most recent ultrasound-guided biopsy was negative.  I figure if I am not relieved of my doubts about the sentinel lymph node biopsy I can always cancel the surgery and find yet another doctor.  

Question:  What are your thoughts on doing a sentinel lymph node biopsy for a prophylactic bi-lateral mastectomy?  The radiologist who did the ultrasound-guided biopsy could not be 100% that she got the area identified in the MRI (though she was confident she did), so I have a feeling my surgeon is going to say that because of that the sentinel lymph node biopsy is warranted.  Is there any medical necessity for the biopsy other than for staging if cancer is found?  If it is just for staging then I am thinking of telling my doctor that I will do chemo. if any speck of cancer is found, just as long as she leaves my lymph nodes alone.  Am I being overly concerned about the lymphedema risk?  Any thoughts on the topic would be greatly appreciated.  

[Jen1967]

I recently had a sentinel node biopsy after I was diagnosed with Invasive Ductal Carcinoma. Just taking the sentinel node doesnt seem to be a great risk for lymphedema I dont think. Its if they find cancer in the gateway node and have to take out the other lymph nodes - then there is more of a risk. I was told though that if I ever need blood work or blood pressure done for the rest of my life - then always to have it done on the opposite arm - just in case. But in an emergency it can be done on that arm that had the surgery.

I would have the biopsy done just for peace of mind. I have a friend whose core biopsy came back negative but the surgeon did not like the lump that she had. He removed the lump and the sentinel node as well and he saved her life! The node was full of cancer - ready to spread into her system.

So I think its worth the risk.

Jen

[Babs39]

Yes, I completely agree with Jen.  I had a sentinel node biopsy with my lumpectomy and it was so very assuring that the nodes were clear.  It makes for a more complicated surgery and I have two incisions instead of one, but everything healed at the same rate.  Having been there myself, I do not think you will regret doing it.  And the fact that you like your doctor, helps you as you go through all that is involved.  Also my doctor told me that breast cancer detection and surgery and treatment has evolved so fast that what happened to a lady you know only about five or ten years ago is not relevant to what will happen to you.  I did not have chemotherapy, I had radiation therapy, but I think the side effects of chemotherapy must be far worse than dealing with lymphedemia.

[Rowena Santos, MD]

How are you? The sentinel lymph node (SLN) is the first lymph node to which cancer is likely to spread from the primary tumor.Sentinel node biopsy or axillary node dissection helps surgeons determine if breast cancer has spread to the lymphatics and the extent of the spread.  If SLN biopsy is done and the sentinel node does not contain cancer cells, the rest of the regional lymph nodes may be spared. Because fewer lymph nodes are removed, there may be fewer side effects. However, there is a small chance ( less than 10%) that the results of the sentinel lymph node biopsy can be inaccurate. It is best to discuss the benefits and risks with your doctor for a better understanding ad to erase all doubts. This link may be helpful:
(http://www.imaginis.com/breasthealth/sentinelnode.asp)

Take care and regards.

[japdip]

You wouldn't need to change Surgeons but you could refuse the Sentinel Node biopsy. The risk of LE is quite low under these circumstances but still possible. With a negative biopsy and only having the bilat. mastectomy for prophalactic reasons I really don't see the need to do a node biopsy but some Surgeons want to be extra vigilant and this is certainly to their credit. If you get a second opinion that differs from the first then you are entitled to a third but the decision will still be yours to make.  

[JPL19]

Thanks everyone for your comments.  I had a great meeting today with the surgeon.  I explained that I was OK with every aspect of my upcoming surgery, except for the SLNB.  She was incredibly understanding.  She very quickly told me that doing the SLNB was completely up to me and she would proceed without it if that was what I wanted.  We talked about the pros and cons.  She told me I did not have to make a decision that day and could just tell her the day of surgery.  

Right now I am leaning toward doing the SLNB on the right side given the fact that I had a biopsy there.  I think it would give me peace of mind to know, with relative certainty, that everything is truly OK there.  As for the left side, there has never been a problem there and never anything "suspicious" in a MRI or Ultrasound.  So, I'm leaning toward not doing it on the left side.  I'll think about it some more and do more research, but I think at the end of the day it will be yes to the right and no to the left.

Thanks everyone for your comments.  They were very helpful.

[frustratedrg]

I had a SN biopsy with three nodes taken out.  Its seven years later  and Ive never had any problems.   It does give you peace of mind and it is relatively minor in the scheme of surgeries.

[kuriosity]

Hi
Your medical dilemma seems incomplete

A] you said " I had a biopsy for a 1.2 cm area of concern (birads 4"
but you don't say if it is DCIS or an invasive  type of cancer??

B] you said  "The radiologist who did the ultrasound-guided biopsy could not be 100% that she got the area identified in the MRI (though she was confident she did), "
That is somewhat sketchy -  even though  it appears you are making your decision on your genetic history-----If it were me-  I'd have another MRI to be certain....
C] A bilateral mastectomy is a huge step! You didn't say if you would have
immediate reconstruction??
D]  Have you read up on SNB?? I don't think arm swelling is a concern at all.
however......

I have done a ton of research on SNB

It appears that the latest study shows that immediate reconstruction is no longer  
a good option after SNB for the following reasons:

If a frozen section of sentinel nodes is done during mastectomy - and results
are negative - then the reconstruction is completed

However, they have now discovered that the "final" pathology
is or can be contradictory. .because it has now been understood that cancer can be found in the final pathology.
If  implants have been done already - then what?  They would have to be removed I would guess...

I think it would be wise to discuss this change in SNB procedure with your dr.  

You said "That surgeon would NOT do a sentinel lymph node biopsy though that doctor tells me it is not uncommon.  Problem is, I really, really like the doctor who wants to do the biopsy and not so crazy about the doctor who would not do it.  "

That is a problem I'm sure but you need to know WHY the other dr. doesn't recommend SNB~
[my thought is that if it was NECessary - as  THE standard of care........both drs. would insist -and give their reasons ]

Sure hope this is more helpful than confusing??  
Blessings~