Extra nodel extension

GrizzlyIam

Hi,

Has anyone diagnosed with positive lymph nodes also had extra nodel extension? If so, how many lymph nodes were positive and did you have chemo and radiation?

Thank you in advance for any response.

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Ballerinashavefins

Hi! I had 2 lymph nodes positive, one with extra nodal extension largest deposit of cancer being 13mm. LVI was present as well. I’ve gone through A/C chemo and I’m on round #10 of 12 for Taxol. Radiation is up next with 5-6 weeks being recommended for treatment plan to include where left breast was (had DMX) as well as left axilla and super clavicle. It’s been a journey for sure and I’m constantly nervous because of the sheer amount of cancer that was in the one node. Reach out with any questions, happy to support. I know how much comfort others experiences and stories provide.

GrizzlyIam

Thanks for reply. I chose to not do radiation due to risk of lymphedema (due to number lymph nodes removed). Radiologist felt the risk was too high. I'm nervous about not doing it. Was it recommended that you do it? All other factors were not considered reasons to have radiation (size of tumor, etc.). I also had a double mastectomy due to high family history.

Ballerinashavefins

So to be honest, it wasn’t presented to me as an option. We just spoke of doing it. I have a high risk of lymphademia as well. I was thinking of discussing further with my oncologist. What I gathered from the radiation oncologist was that the benefit for me was preventing spread locally in the nodes and chest. She absolutely felt it would be beneficial but didn’t provide a % of benefit. I’m considering doing it because I want to do all the options now so if it does metastasize I can at least say to myself I hit it with everything. I am nervous about the side effects... heart, lung and risk of lymphademia though for sure. My husband wants me to opt out. Can I ask how many nodes were removed for you? The extra nodal extension was a key thing that was mentioned in the consult of why I should do rads. I had levels 1&2 removed during my DMX. Surgeon swears she gutted my arms in the dissection but for whatever reason pathologist only could harvest 6. But I know based on the dissection I’m high risk for lymphademia... both oncologist and rad oncologist said it. But they didn’t act like that should be a driver of my decision making. They’re really pushing me to do it. I know it’s so hard all the decisions and well everything that comes with cancer. I’d say go with your gut. There is risk either way do do what makes you feel confident and good. Hope this helps!

Taralynn

hello,

I had two positive nodes, one with 3mm of cancer and extra nodal and the other with 1mm no extra nodal. I was surprised the 3mm node had ENE as I assumed there would have to be a lot more cancer present In the node. Anyway, I will be getting chemo starting 3/31 and the ENE was as one of the main reasons for it being highly recommended. I also just found out I do need radiation though I don’t have much info on that yet. It will be after chemo and I think 5-6 weeks at least in 6 ish months I’ll be able to say I did everything I possibly could, that’s what keeps me moving.

GrizzlyIam

Oh I entered my diagnosed info but it's not showing. Anywhoo...My rad oncologist said the factors for radiation are size of tumor, # of pos lymph nodes, if cancer is in chest wall. and if margins are clear after surgery. So all those factors were considered a no. The only thing i had was the extra nodal extension. He said he doesnt think i should have radiation but he said it was my decision if i wanted to have. I have 2 nodes removed with initial surgery (sentinel). They were both positive. I asked how do you know you got all cancer because of the extra nodal extension. The surgeon said do another surgery to which I had another 17 or maybe 15 (cant remember). Those were all negative. I also had a double mastectomy. Cancer in one side only. He said save radiation for a future fight if I have recurrence cause can only have it once. My husband also wanted me to not do it

MelissaDallas

Grizzly, once you enter your diagnosis, you have to go to Settings, scroll down almost to bottom and change it from private to public.

GrizzlyIam

Ok. Thanks