sentinel node bioposy-to have or not....
I was dx in June with DCIS and had a lumpectomy with clear margins. After my surgery it came to light that I have the ATM gene mutation and have decided to have a bilateral mastectomy. I need to decide now if my sentinel nodes should be taken. My oncologist doesn't think they need to since my cancer was strictly DCIS however my surgeon said she is on the fence because my breast tissue is so dense she can't be sure that the MRI didn't show cancer in other places. My concern with doing it is geting Lymphedema and wondered if anyone had any thoughts or similar experiences. I am obviously being aggressive with the mastectomy but don't want to do anything that might cause other issues and may not be necessary.
Any thoughts would be helpful. Thanks!
Comments
-
I too had DCIS , surgery and
I too had DCIS , surgery and lumpectomy, radiaion. I n ever heard my margin #s etc.
I had my biopsy pre surgery-So I do not have much advice. I am sure other hear will be a able to help you out with some thoughts.
How about a 3rd opinion-if your insurance allows it.
Denise
0 -
Hi Denise:disneyfan2008 said:I too had DCIS , surgery and
I too had DCIS , surgery and lumpectomy, radiaion. I n ever heard my margin #s etc.
I had my biopsy pre surgery-So I do not have much advice. I am sure other hear will be a able to help you out with some thoughts.
How about a 3rd opinion-if your insurance allows it.
Denise
Did you have anyHi Denise:
Did you have any issues with the Lymphederma following your biopsies?0 -
I opted for a bilateral
I opted for a bilateral mastectomy with no reconstruction back in 2011 based on the characteristics of my DCIS in the right breast. I had the left removed for other reasons that I won't get into now. I was never tested for any gene mutation. (I had a lumpectomy without clean margins.)
The surgeon told me that once the mastectomy was done, there was no going back to check the sentinel nodes. I wanted to make sure that they were cancer free, as I wanted to do ALL I could to make sure it was gone and that I was doing everything I could.
I had three sentinal nodes removed in the left side and one sentinel node and one axillary node removed from the right side. Netiher side's nodes were positive.
I have mild lymphedema in both sides of my arms, hands, and chest now.
Of course, now, with hindsight, I would not have taken the senintel nodes out. HOWEVER, when I look back to the information I had at the time back then and I think about it.... based on the information I had at the time, I would still make the same decision to have the nodes removed and tested.
Everyone has to think about what they want to do based on the information on hand at the time and do the the best they can.
0 -
Ace44Ace44 said:Hi Denise:
Did you have anyHi Denise:
Did you have any issues with the Lymphederma following your biopsies?
No I did not have anyAce44
No I did not have any issues.
I had a 2nd lumpectomy-but 2nd one was ONLY scar tissue-thankfully!
Denise
0 -
It may make a difference ifAce44 said:Hi Denise:
Did you have anyHi Denise:
Did you have any issues with the Lymphederma following your biopsies?It may make a difference if Disneyfan, aka Denise, had any lymph nodes removed during the lumpectomy regarding Lymphedema.
0 -
Ace .. any updates, ?cinnamonsmile said:I opted for a bilateral
I opted for a bilateral mastectomy with no reconstruction back in 2011 based on the characteristics of my DCIS in the right breast. I had the left removed for other reasons that I won't get into now. I was never tested for any gene mutation. (I had a lumpectomy without clean margins.)
The surgeon told me that once the mastectomy was done, there was no going back to check the sentinel nodes. I wanted to make sure that they were cancer free, as I wanted to do ALL I could to make sure it was gone and that I was doing everything I could.
I had three sentinal nodes removed in the left side and one sentinel node and one axillary node removed from the right side. Netiher side's nodes were positive.
I have mild lymphedema in both sides of my arms, hands, and chest now.
Of course, now, with hindsight, I would not have taken the senintel nodes out. HOWEVER, when I look back to the information I had at the time back then and I think about it.... based on the information I had at the time, I would still make the same decision to have the nodes removed and tested.
Everyone has to think about what they want to do based on the information on hand at the time and do the the best they can.
Do you have a game plan - ...
Please update us when possible.
Vicki Sam
0 -
Post surgeryVickiSam said:Ace .. any updates, ?
Do you have a game plan - ...
Please update us when possible.
Vicki Sam
Hi Vicki. I had my mastectomy last Friday and did not do the sentinel node biopsy. My tumor board thought it was not necessary due to the results and my margins from the lumpectomy. They did test a small sample of tissue while i was in surgery and found no cancer. I am still waiting for the rest of the results. I am at home recovering now. My surgery went well and so far have had fairly minimal pain aside from the first few days. Only annoyance is the drainage tunes but I have good mobility in both arms especially the side I had the lumpectomy on. Thank you for following up to find out how things are going. This site has been very helpful and such a great piece of support for me and I have appreciated that so much.
April
0 -
HI. I am slated for doubleAce44 said:Post surgery
Hi Vicki. I had my mastectomy last Friday and did not do the sentinel node biopsy. My tumor board thought it was not necessary due to the results and my margins from the lumpectomy. They did test a small sample of tissue while i was in surgery and found no cancer. I am still waiting for the rest of the results. I am at home recovering now. My surgery went well and so far have had fairly minimal pain aside from the first few days. Only annoyance is the drainage tunes but I have good mobility in both arms especially the side I had the lumpectomy on. Thank you for following up to find out how things are going. This site has been very helpful and such a great piece of support for me and I have appreciated that so much.
April
HI. I am slated for double mastectomy next Monday the 26th. I will do the sentinel node biopsy. I'm scared out of my mind what it will reveal and how bad pain wise it and the mastectomies will be. I hope they send me home with an adequate pain med. Any information you can provide me since you just went through this would be helpful...tips, tricks, etc. I'm glad to hear you seem to be doing well.
0 -
I understand being scared. Ibevaschia said:HI. I am slated for double
HI. I am slated for double mastectomy next Monday the 26th. I will do the sentinel node biopsy. I'm scared out of my mind what it will reveal and how bad pain wise it and the mastectomies will be. I hope they send me home with an adequate pain med. Any information you can provide me since you just went through this would be helpful...tips, tricks, etc. I'm glad to hear you seem to be doing well.
I understand being scared. I have been since I was first diagnosed. I still am and think it will be a long time before I'm not. I was lucky to be diagnosed so early and had the good fortune to have a lumpectomy with clean margins therefore I can't tell you anything about the sentinel nodes except what I'm sure you've already read. One thing I will say is that when I first got into pre-op the hospital delivered a bag from the cancer center with some items in it. In there at a cost to the insurance company was a camesol that had pockets for the drainage tubes. If you don't have something like that I highly recommend it. You can look them to any shirt but I found that it was soft and the pockets were much nicer and easier then you pinning something to a shirt. Something small but to me it made a difference. The second thing I foun d, in hindsight, was to go home as soon as you can get your pain under control. i opted to stay two nights so my 5 yeat old would not see me in a drug induced haze but i think i would have been much more comfortable at home. The hospital beds are uncomfortable and someone is always coming in to take vitals ask pain levels, etc. My medical care personnel were amazing but if you have good support at home I would do that. I think you will get more good rest there. Other than that I will say the first day was a haze and the second day was pain management and pretty miserable however the morning of day three when I was thoroughly ready to be home, I got up and sat in a regular chair (pillow behind in my back) and though I was sore if felt great. I got dressed, had my husband comb my hair and pull it back for me and was ready to get going. I have had good luck with pain mgmt at home. I have already cut my meds in half and should be done altogether soon. The worst pain for me is the drainage tubes but they taped them up extra so they wouldn't move as much and it has helped. There is a lot more I could say but this is probably a lot to take in already. If you have more questions or specific ones please let me know and I would happy to answer them. I even took a short walk today and showering hasn't been a problem either. Sending you positive thoughts and please reach out again with any questions you might have. Btw-they sent me home with Valium for muscle tightness and norco for pain. I only take the Valium at night and have only take two of the norcos all day.
April
0 -
Thank you AprilAce44 said:I understand being scared. I
I understand being scared. I have been since I was first diagnosed. I still am and think it will be a long time before I'm not. I was lucky to be diagnosed so early and had the good fortune to have a lumpectomy with clean margins therefore I can't tell you anything about the sentinel nodes except what I'm sure you've already read. One thing I will say is that when I first got into pre-op the hospital delivered a bag from the cancer center with some items in it. In there at a cost to the insurance company was a camesol that had pockets for the drainage tubes. If you don't have something like that I highly recommend it. You can look them to any shirt but I found that it was soft and the pockets were much nicer and easier then you pinning something to a shirt. Something small but to me it made a difference. The second thing I foun d, in hindsight, was to go home as soon as you can get your pain under control. i opted to stay two nights so my 5 yeat old would not see me in a drug induced haze but i think i would have been much more comfortable at home. The hospital beds are uncomfortable and someone is always coming in to take vitals ask pain levels, etc. My medical care personnel were amazing but if you have good support at home I would do that. I think you will get more good rest there. Other than that I will say the first day was a haze and the second day was pain management and pretty miserable however the morning of day three when I was thoroughly ready to be home, I got up and sat in a regular chair (pillow behind in my back) and though I was sore if felt great. I got dressed, had my husband comb my hair and pull it back for me and was ready to get going. I have had good luck with pain mgmt at home. I have already cut my meds in half and should be done altogether soon. The worst pain for me is the drainage tubes but they taped them up extra so they wouldn't move as much and it has helped. There is a lot more I could say but this is probably a lot to take in already. If you have more questions or specific ones please let me know and I would happy to answer them. I even took a short walk today and showering hasn't been a problem either. Sending you positive thoughts and please reach out again with any questions you might have. Btw-they sent me home with Valium for muscle tightness and norco for pain. I only take the Valium at night and have only take two of the norcos all day.
April
I went for my history and physical today. Cleared for surgery. Dr gave me some valium to help with my anxiousness the next few days. Trying to get everything done around the house I can to prepare. Think I have everything in order. I got fitted for a compression bra that has the pockets for the drains. Hoping that will be adequate. I have plenty of support at home. I want it over with, but yet I'm scared for Monday to get here. I have the fridge stocked with all I should need and will pull things out of the cupboards Sunday that I will need and have them at waist/chest level. If you can think of anything else I should prepare for, please let me know. BEV
0 -
I am going to write things asbevaschia said:Thank you April
I went for my history and physical today. Cleared for surgery. Dr gave me some valium to help with my anxiousness the next few days. Trying to get everything done around the house I can to prepare. Think I have everything in order. I got fitted for a compression bra that has the pockets for the drains. Hoping that will be adequate. I have plenty of support at home. I want it over with, but yet I'm scared for Monday to get here. I have the fridge stocked with all I should need and will pull things out of the cupboards Sunday that I will need and have them at waist/chest level. If you can think of anything else I should prepare for, please let me know. BEV
I am going to write things as I remember them b/c my brain doesn't always work properly any more ☺when I woke up my arms were heavy and almost nu!b feeling. If this happens don't be alarmed. They told me it was because my arms were straight out for the whole 5 hour surgery. The feeling gradually came back while I was in the hospital bit it was definitely unsettling first since no one had mentioned that might happen. Again that may not happen but don't panic if it does. I'm glad you have things ready. I was not nervous until about 10 seconds beore I went under. The last thing I remember is my surgeon rubbing my arm telling me everything was going to be OK. I had complete faith in her and she didn't let me down and I hope you have that same faith in your surgeon and can be some comfort to you while you wait to go on. If I think of anything else I will post to you. If I can't think of anything I will be thinking of you and sending all my positive thoughts and energy. Please let me know how it goes when you are feeling up to it.
April
0 -
Thank you, April. I'llAce44 said:I am going to write things as
I am going to write things as I remember them b/c my brain doesn't always work properly any more ☺when I woke up my arms were heavy and almost nu!b feeling. If this happens don't be alarmed. They told me it was because my arms were straight out for the whole 5 hour surgery. The feeling gradually came back while I was in the hospital bit it was definitely unsettling first since no one had mentioned that might happen. Again that may not happen but don't panic if it does. I'm glad you have things ready. I was not nervous until about 10 seconds beore I went under. The last thing I remember is my surgeon rubbing my arm telling me everything was going to be OK. I had complete faith in her and she didn't let me down and I hope you have that same faith in your surgeon and can be some comfort to you while you wait to go on. If I think of anything else I will post to you. If I can't think of anything I will be thinking of you and sending all my positive thoughts and energy. Please let me know how it goes when you are feeling up to it.
April
Thank you, April. I'll update once I am out of surgery or the next day when I am home.
0 -
Sentinal Node
Hi guys,
The Ganolinium dye MRI will light up suspicious cells. I learned of this test by my aunt who had stage 2 BC. Once I had that, and it showed the magnitude of cancer, my whole treatment was ramped up from their stage 1-2 thoughts to get her in now thought. That saved my life! I ended up being a stage 3A Invasive breast cancer and DCIS. It changed my treatment date to a much sooner date. Everything was based around this test after that. ALSO - I opted for a skin sparing double mastectomy. While they are in , they tested my sentinal with another dye they injected into the node to see if it would glow. THe glow will glow cancer cells. If positive they will remove. I had 4 glow , so they took 18 nodes. I have lymphadema on my left arm. I bought a pump that is basically like a blood pressure arm wrap that is the size of my upper body and I wrap it around my body and push start. It's the best massager EVER! It's called FLEXI TOUCH - insurance covers it usually 80%. I don't wear arm wraps because it hurts my shoulder area where the pressure builds up. I will take this over my cancer any day
MY skin sparing mastectomy was a great idea in the end because I wasn't ready to have reconstruction right afterwards. So it took my D cup down to a B as though I was 16 again. It looks great frankly. I do have scars across the middle where they removed my areola /nipples but I'm now used to it. I JUST now this month have about 60% of my feeling back in my arm with nodes removed and my surgery was last year on Aug.5 2014.
Losing feeling - the body will take it's time to remember how to un numb its self. Over my years of surgeries I have learned you can retrain your skin to feel again by using light touch methods up and down, say with a feathery or light skimming across your skin. Once I started really practicing this method, I was AMAZED at my skin's response. I was getting the shocks or zaps before when a nerve remembered it still had power but when I started gently reminding the numb area in light touch up and down the area it made the wake up stage MUCH more gentle.
Drains - My biggest issue! Ask ahead of time if your hospital provides pouches or pockets to put your drains in before your surgery date. This is huge because if they don't have this, you must improvise. I wa very surprised mine didn't have anything set up for this! Loved the staff and the pink everything but why in the world would they have this set up as part of the recovery process was beyond me. WE CREATED OUR OWN at the hospital. We asked for a monitor pouch that they use for heart patients. My husband and nurse engineered it and it turned out to be a great invention. Shocking that that was our experience. But the care overall was fantastic! Still know there ways before surgery date
I have since done 16 rounds of A/C/T chemo and 42 rounds of radiation. All done and over with. Hair is growing in nicely. I'm past pixie length but not quite Bob just yet 
Stay tough!0 -
Hi. I had a lumpectomy and
Hi. I had a lumpectomy and sentinol node removal and am now in the middle of my radiation treatments. I just found out this week that I also have the ATM gene. I have an appointment this week to discuss with my dr about a double masectomy. I aslo will be having a full hysterectomy in November after my radiation is finished.
0 -
Did your doctor recommend thedenaporter said:Hi. I had a lumpectomy and
Hi. I had a lumpectomy and sentinol node removal and am now in the middle of my radiation treatments. I just found out this week that I also have the ATM gene. I have an appointment this week to discuss with my dr about a double masectomy. I aslo will be having a full hysterectomy in November after my radiation is finished.
Did your doctor recommend the full hysterectomy? I am meeting with my doc next week to discuss the same even though my genetic counselor said that as of now there was no link between the ATM gene and an increased risk of ovarian cancer. Just curious on your decision and what you might have been told that is different than the information I received.
Thank you!
0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.8K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 397 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.4K Kidney Cancer
- 671 Leukemia
- 792 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 237 Multiple Myeloma
- 7.1K Ovarian Cancer
- 61 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.5K Prostate Cancer
- 1.2K Rare and Other Cancers
- 539 Sarcoma
- 730 Skin Cancer
- 653 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards