refused radiation post mastectomy axillary dissection surgery

spratt5

Has anyone had a mastectomy with 1 sentinel lymph node removed at time of surgery? Pathology showed that the sentinel node that was removed during mastectomy had a tumor. SO & RO recommended radiation treatments but you refused radiation for personal reasons. Then opted for a axillary lymph node dissection surgery? If so, what was your experience with the dissection surgery? Was your SO understanding of your choice to have the dissection surgery over the radiation?

I've recently refused radiation treatments for personal reasons. Now I'm considering axillary lymph node dissection surgery to confirm that cancer hasn't spread. Just want to know if anyone else has been in my shoes ? Thank you in advance for taking the time to share your experiences with me.

bam320

Hi Spratt,

My situation is little different in that going into surgery they did not anticipate any lymph node involvement due to my tumor being very small and grade 1. I ended up with an axillary node dissection during surgery with 8 of 33 nodes being involved. I don't understand how some can have very large tumors and no lymph node involvement and others with small tumors have node involvement. Cancer is a sneaky thing. As far as the aftermath of the dissection, I have some cording but full range of motion in my arm with a little tightness. I have gone to a pt to work on the cording and she was able to break one. I will be going back to her during radiation which I start next week because that can affect range of motion too.

Did chemo scare me? yes. Does radiation scare me? Yes. But I would rather put everything to this cancer that I can to hopefully prevent a recurrence. I know there are no guarantees either way and these decisions suck! I wish you the best with your decision!

MinusTwo

spratt: I had BMX for DCIS with SNB on both sides. Serial nodes were clean and margins were clean so I went on my merry way. Two years later one of those pesky rogue cells that wander off wherever they want landed in my lymph system. Well, hmmm, now the big C has changed to IDC and it's HER2+.

It was only on ONE lymph node - but remember I've been through this before. No way was I going to opt out of both chemo & radiation. I had ALND after chemo, then rads. I ended up with breast & truncal lymphadema. There is NO way to predict how many cells 'escaped' during your mastectomy. Personally I think you need some way to kill what may be left and cutting is not the answer.

spratt5

@ bam320 , Thank you for taking the time to respond to my post. You're right in saying there are no guarantees with any of these decisions. I appreciate you sharing your experience with me. I'm happy to hear that with PT you are able to recover very well. Are you experiencing any lymphedema ? If so, are you seeing a specialist or is PT helping you with that as well?

LeesaD

During my mastectomy they found one of four sentinel nodes showed micro Mets so small amount of cancer. Final pathology showed it was actually two of four sentinel nodes showed micro Mets. Both my MO and surgeon did not recommend ALND as they said odds very small other nodes involved but I wanted the axillary nodes checked as I could not live with the unknown. My surgeon agreed to go back in two weeks later and sure enough two of fourteen more nodes were ‘full of cancer’ as my MO said to me when he called with results even more than the sentinel nodes. Well I’m very glad I went back in. Ended up having radiation also then as it was warranted with four involved nodes. The ALND surgery was fine. Easier than the BMX. No lymphadaema so far and I had 18 nodes total removed. I had no issues with radiation either and found it relatively easy compared to chemo.

spratt5

@ MinusTwo , Thank you for taking the time to respond to my post and sharing your experiences with me. Unfortunately, there is no guarantee with any of these treatments. So what I'm hearing you say is that if you could turn back the clock to when you first had your diagnosis of DCIS you would have followed your mastectomy with radiation if given the choice? How did you know you had a re-occurrence in your lymph nodes? Did you feel something? MRI or ultrasound?

My personal reason for not having radiation has to do with killing off not just cancer cells but healthy cells and healthy DNA. I am BRCA1 & CHEK2 positive therefor by destroying these good cells/DNA, I'm significantly increasing my chances of getting other cancers associated with my genetics. Once you kill the healthy DNA via chemo or radiation, there is no way to get that back. Now my body has to fight that much harder to beat a cancer/illness. There is no clear cut answer to any of this and that's what makes decisions like this very hard.

spratt5

@ LeesaD - Thank you so much for sharing your experience with me. That's just it, the unknown is terrifying. This is exactly why I'm looking into the ALND first. Why did your MO take out 18 nodes total? Do you know if what you have was a level 1, level 2, or a level 3 dissection? So because your MO took out nodes that pathology found were indeed cancerous, you went ahead and had the radiation post surgery, right?

LeesaD

Spratt5- I don't think they know how many nodes they get during the dissection until they look at the tissue for pathology. Apparently everyone has a different amount of nodes and during the dissection you can get 5 or 25 depending on the individual. I honestly don't remember if I had level 1,2 or 3 dissection 🤔. I'm going to pull my paperwork and look. And yes, the radiation was warranted after the results from the dissection showed the additional two fully positive nodes. I think my RO said 3 or more involved nodes and radiation is recommended. When I knew I had the micromets in the the 2 of 4 sentinel nodes I did a lot of research on micromets and the consensus seems with micromets to do radiation or do an ALND. I wanted the ALND regardless as I said as I know myself and could not live with the unknown ...and ended up with radiation anyway due to finding positive nodes. Apparently I'm in the minority where the axillary nodes had more cancer than the sentinel nodes. My advice is to trust your instincts and your gut.

ElaineTherese

LeesaD is right; each of us has a different number of axillary nodes. I had all my Levels 1 and 2 removed, which for me, totalled 20. I did both ALND and radiation; I only had a lumpectomy, plus I had aggressive cancer (triple positive).

Symphony19

Hello spratt5 ,

I had just my sentinel lymph node removed during my bmx in June. The node tested negative in the OR, and then pathology found a micromet. So I am going back for an axillary dissection after I complete my A/C chemo in September. I am also hoping to avoid radiation, but the recommendation of my MO and tumor board was surgery.

I researched ALND vs. radiation. Both have similar results, but there are situations that call for one vs. the other. My cancer care center, Dana Farber in Boston, is conservative and has not moved from ALND as standard of care. If nodes come back negative, I won’t need rads. Praying that will be the case after the 4 rounds of dose dense A/C I am doing right now. If my surgeon had found cancer in the sentinel node in the OR, she would have done the ALND right then. I knew that going in. Damned micromet!

I can’t comment on the surgery since I have not had it yet. I feel confident in the choice for me, because then I will know for sure the status of my nodes and whether I can safely omit radiation.

Good luck!

spratt5

Thank you LeesaD for clarifying the lymph nodes that people have vary person to person. Symphony19 and ElaineThere thank you for your feedback!

I recently read that the more lymph nodes you have in your body during the dissection surgery, the more your body is fighting something. Pathology post mastectomy showed that I had a contained 5 mm macrometastatic carcinoma in my sentinel node - thankfully was removed during the mastectomy surgery.

I met with my surgical oncologist last week and she agreed to an ALND surgery if that is the path I want to take. She mentioned that she would prefer that I have radiation instead. She stated she would be aggressive and remove level 1 and level 2 lymph nodes and check level 3 during surgery. She said that if pathology determined that I had positive lymph nodes, radiation would be needed. To me that obviously justifies having the radiation. Having the ALND surgery would cause me to then live with lymphedema for the rest of my life which doesn't sound fun at all. There is no easy decision and no guarantees with either. I'm getting another opinion from a surgical oncologist out of town to see what they think I should do.

spratt5

Thank you MinusTwo for sharing your experience with me. I'm so sorry you have to go through this again for a second time. I don't want to have to go through the C again either. What's frustrating is that there are no guarantees with any of this. I do understand your thought of just having a ALND wouldn't take care of any cancer cells that may have traveled elsewhere.

Best wishes to you and please keep me posted with how you're doing.

IM2C

Hi ladies! I’m a few weeks behind on this convo but stumbled here because I’m in a similar boat and trying to determine if I can avoid rads.

Am I correct: it sounds like most of your oncs were saying that when you have a positive node, you do EITHER rads OR the ALND? right now I’m being told that if they find a positive node during my SNB, they’ll immediately proceed with ALND and that I’ll also have to still do rads. In my case tho, I had biopsy confirmed isolated tumor cells (even smaller than micromets) in one node prior to starting my neoadjuvant chemo.

I’m interested to hear that most of you were not told to do both ALND and rads, if I’m reading this correctly? Thanks!!

OCDAmy

IM2C I had ALND and rads.

LeesaD

IM2C- I had both ALND and Rads. I remember when I had two sentinel nodes with micromets my MO wasn’t recommending either one. I had done some research and with micromets being a grey area I found research recommended radiation or ALND to check further. I chose ALND and because they found two fully positive nodes from ALND I now had four involved nodes which then warranted radiation which I did after chemo.

spratt5

IM2C - I agree with LeesaD. Yes, you will want your SO to conduct an ALND during your mastectomy if they can see using the dye that other nodes past the sentinel node light up.

During my mastectomy, the dye only lit up my sentinel node, therefor she just took that one. Once post surgical pathology report came back, it should that I had a contained macromet tumor in my sentinel node. My MO/SO recommend radiation over ALND for my particular case. I brought the idea of an ALND surgery first to them and they would do the surgery if I want them to. If more nodes were found to be positive during the ALND then it would warrant radiation afterwards.

I'm getting a third opinion because I also have a positive CHEK2 gene and a BRCA1 variant mutation. I have read multiple studies that show an increase risk of radiation induced cancers following radiation treatment as well as increasing my risk to other cancers associated with my gene mutations as a result of getting radiation to treat the breast cancer.

IM2C - Just know that this is your body and your decision (go with your gut) - your SO/MO can only guide you to what works for the majority of patients. Unfortunately, there is no easy solution and no guarantees. Good luck to you and keep us posted

IM2C

thank you so much ladies! Sounds like I need to see what happens with my SNB before deciding on rads. If they find micromets or bigger, seems like rads are warranted. Right now I’m just isolated tumor cells, which is considered clinically node-negative.

I’m in my early 30s, so my RO said my chances of radiation-induced secondary cancer are much higher (maybe as much as 10% or so). And the survival benefit of rads may not outweigh that risk, so I’m trying to be really careful. Thanks again ladies!!

G1973

hello ladies. I just read this thread and it looks like you answered so many of my questions. I completed chemo AC/T. My tumor was large an one node was involved. I had a small response from the AC but a decent response from Taxol. It cleared the node and reduced the size of the tumor. Last Wednesday I had a BMX and the surgeon said the nodes were clear, but pathology report showed one sentinel and one axillary node positive. The third sentinel was negative.

So here is the question. How do they determine during surgery if the nodes are positive

spratt5

G1973 & IM2C - During my BMX, a dye was injected at the tumor site in my breast. That dye will light up to show anymore suspicious tumors that weren't detected in an MRI/Ultrasound,etc. In my case, none of my lymph nodes lit up with the dye. My SO removes the sentinel node regardless if it lights up with the dye or not. Pathology report after surgery came back showing a contained .5 mm tumor in my sentinel node. My SO recommended radiation to kill anymore potentially positive nodes that may be floating around but not large enough to show up in a test. My SO used a tool that Memorial Sloan Kettering uses to predict the likelihood that breast cancer has spread to additional lymph nodes. Here is the link, http://nomograms.mskcc.org/breast/BreastAdditionalNonSLNMetastasesPage.aspx

You can use the info on your pathology report to plug in the data. If you don't have all the data to use the tool yourself, advocate to have your SO use this tool to give you the data. This tool is what allowed me to make a decision to move forward with radiation treatments because the data showed that I have a 39-45% chance that the breast cancer spread to my axillary lymph nodes. Radiation treatments would reduce this by 14% in my case.

G1973

spratt5- thank you so much for the information. Just when you think that you know what’s going on Bam it changes! I’m pretty sure that’s what happened for me as well when she was completing the double Mastectomy the day test came back negative but micro Mets were found in pathology I think she said the were .6 in my ne and .3 in the other.