ILC w/1 lymph node cancerous. Standard not to radiate lymph area?

@mickeyambrose49 I am wondering why, at 66, they put you on tamoxifen. Have you now tried aromatase inhibitors? I was able to tolerate brand name letrozole and later found out that I could tolerate letrozole from one manufacturer. Lobular can be harder to image, according to my doc, so glad you got it diagnosed.

More importantly, it is good that you had that bone scan so in the end being a squeaky wheel helped you! I also looked those terms up and the Mayo site says that enchondromas can sometimes transform into chondrosarcoma.

It seems that this new kind of tumor is not related to your breast cancer. Is that right? The Mayo site says that sometimes they are slow-growing and hoping you caught it early and surgery takes care of it. So sorry you are dealing with this!

I really hope you hear from someone Monday and don't have to wait for info and treatment.

I am just popping in here to say I am sorry to hear about your story and how your situation has been handled. I also have ILC and share your worries but seems like you've been given very little grace and respect on your journey. Please hang in there and know we are all sending you love and positive thoughts to keep head up, keep plugging away for answers and be persistent. Sadly we have to sometimes be a bit edgy to get progress and that doesn't help the situation which can be scary and unknown, and it beats down your mind while your body already taking a beating. Hang in there and sending you 💓!!

Your post is encouraging. Thank you! I had a pea sized mass removed along with 3 lymph nodes. On was cancer. I think she may have said that because it is an invasive lobular cancer that is known to travel. Although she said the fact that I am older (66yo) female and I have breast leaves me open to having cancer in the other breast. My oncotype score was 18 and I am trying the 3rd hormone blocker. So many side effects effect my brain. Makes it difficult to do my job. I have been complaining that I don’t feel well since after lumpectomy (Jan 2023) and radiation (April 2013) . They had started me on tamoxifen and they assumed the side effects of the drug was why. Finally in June she was tired of my complaining and my oncologist transferred me to another oncologist in the hospital that handles “more difficult cases.” Made me feel awful being dumped like that. Before she referred me she ordered a bone and brain scan because she wanted prove to me it was the side effects of the hormone blockers. I saw my new oncologist on Monday this week. She wasn’t sure why I was on her schedule so we discussed trying a new hormone blocker and we’re going to end appt when it dawned on me I had never gotten the results of the bone scan. My memory is not good on these hormone blockers. I asked for the results. She tried to tell me that the results had been discussed with me. She started reviewing the report and than stated with shock in her eyes and voice. “You have a spot on your bone above your knee. We need to get you to xray. I’ll get the results to you rt away. “ she walked out and a nurse walked in and escorted me to X-ray. I heard nothing Tuesday and by wed at 3pm I was frustrated and called. Left a VM that I would like to hear the results of the X-ray. After 5pm a message appeared in the hospital portal telling me I have an endochondroma in femur and within it is a chondrosarcoma. I didn’t know what either was. I tried calling but they were closed so I went to my friend google which doesn’t always have accurate data and I found that what I have is bone cancer. Late at night with no one to talk too. I cried. I called the oncologist the next morning and waited all day. I finally got a call at about 5pm. No apology for the way they delivered the news no compassion for what they had put me through. The nurse that called said that the other nurse that sent that message had misspoken as I still need a biopsy to confirm but they are 90% certain it’s cancer. I am devastated and deeply hurt because of the lack of compassion I experienced from my care team during this time in my life. I was told I needed to find an orthopedic surgeon so I ask that they send a referral to Mayo Clinic. This morning (Friday) They sent a piece of paper to Mayo but no images or reports and Mayo can’t schedule me or even accept me until they see these images and reports so I wait and I wait some more. Im 66 and after this week I feel 100yo. Thank you for listening. I needed to get this off my chest.

I was wondering if you could reach out to your surgeon and ask their office to get involved. This is absurd that they didn't send scans to Mayo upon your request - this is so simple and I'm wondering if the admin person just failed to attach. Can you link your portal thru your hospital (not sure where) to Mayo so their second opinion can at least review your file and reports? Please keep us posted - praying for you! xo

I would be on their case and call again and demand that they send them that day as they are holding up care for you and getting an appointment with Nayo and going forward.

Say that this is important for your care and ask who the contact person is that will be doing this.

Push, push push....

Hope that this is already solved for you.

So sorry that you have gone though all this.
Keep us posted.

Your post is encouraging. Thank you! I had a pea sized mass removed along with 3 lymph nodes. On was cancer. I think she may have said that because it is an invasive lobular cancer that is known to travel. Although she said the fact that I am older (66yo) female and I have breast leaves me open to having cancer in the other breast. My oncotype score was 18 and I am trying the 3rd hormone blocker. So many side effects effect my brain. Makes it difficult to do my job. I have been complaining that I don’t feel well since after lumpectomy (Jan 2023) and radiation (April 2013) . They had started me on tamoxifen and they assumed the side effects of the drug was why. Finally in June she was tired of my complaining and my oncologist transferred me to another oncologist in the hospital that handles “more difficult cases.” Made me feel awful being dumped like that. Before she referred me she ordered a bone and brain scan because she wanted prove to me it was the side effects of the hormone blockers. I saw my new oncologist on Monday this week. She wasn’t sure why I was on her schedule so we discussed trying a new hormone blocker and we’re going to end appt when it dawned on me I had never gotten the results of the bone scan. My memory is not good on these hormone blockers. I asked for the results. She tried to tell me that the results had been discussed with me. She started reviewing the report and than stated with shock in her eyes and voice. “You have a spot on your bone above your knee. We need to get you to xray. I’ll get the results to you rt away. “ she walked out and a nurse walked in and escorted me to X-ray. I heard nothing Tuesday and by wed at 3pm I was frustrated and called. Left a VM that I would like to hear the results of the X-ray. After 5pm a message appeared in the hospital portal telling me I have an endochondroma in femur and within it is a chondrosarcoma. I didn’t know what either was. I tried calling but they were closed so I went to my friend google which doesn’t always have accurate data and I found that what I have is bone cancer. Late at night with no one to talk too. I cried. I called the oncologist the next morning and waited all day. I finally got a call at about 5pm. No apology for the way they delivered the news no compassion for what they had put me through. The nurse that called said that the other nurse that sent that message had misspoken as I still need a biopsy to confirm but they are 90% certain it’s cancer. I am devastated and deeply hurt because of the lack of compassion I experienced from my care team during this time in my life. I was told I needed to find an orthopedic surgeon so I ask that they send a referral to Mayo Clinic. This morning (Friday) They sent a piece of paper to Mayo but no images or reports and Mayo can’t schedule me or even accept me until they see these images and reports so I wait and I wait some more. Im 66 and after this week I feel 100yo. Thank you for listening. I needed to get this off my chest.

Mayo should be able to run their own tests . That’s what they do at MD Anderson and I think Mayo is just as big and does not need to rely on the tests of some third rate hospital . So sorry you have gone through this mishandling of your journey .

I had mastectomy and sentinel node biopsy for invasive lobular cancer. One of three sentinel nodes had a 5mm cancer with extra nodal extension. One Radiation Oncologist wants to radiate the entire chest wall and axillary lymph nodes. Another recommends radiation to the axillary and supraclavicular nodes, and no radiation to chest wall. A third suggests considering no radiation because my cancer is in "a gray area" in terms of whether to radiate and no radiation would be within the standard of care. I am taking anastrozole. Pathology after surgery was T2N1(a) It is so difficult to know which way to go when you are given greatly different options that are each considered reasonable. Why is your radiologist refusing to radiate the lymph nodes? Did you have more axillary nodes removed than just the few done with a sentinel node biopsy?