Breast cancer spread to lymph nodes. Would you choose chemo?

Hi, I'm 47. I had a bilateral mastectomy October 13th, just got the pathology report a couple days ago. Final diagnosis: Invasive lobular carcinoma with micrometatasis in node. My oncologist is recommending 5 months of chemotherapy. I'm trying to make the best decision for myself. For those of you who have done chemotherapy, would you choose this therapy? What have you gained or lost by doing chemo? My oncologist said that chemo would increase my survivorship by 8-14%. Is it worth it? Long term?

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What size and grade? Did you have an Oncotype Dx? That test tends to determine chemo or no chemo. Does your doc explain their suggestion for treatment?

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@windyshores

What size and grade? Did you have an Oncotype Dx? That test tends to determine chemo or no chemo. Does your doc explain their suggestion for treatment?

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Hi. Initially it was stage 2a, then oncologist said stage 1b, low grade, slow growing. She said she didn't order the oncotype because it would be low and cause conflicting information. Estrogen receptor postive but not her2. She recommends 5 months chemo, followed by radiation-33 treatments, followed by removal of ovaries and endocrine therapy. I am so overwhelmed. She said because it spread to lymph nodes that is is safe to assume that it has traveled elsewhere in my body.

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@kware75 I am unsure if oncotype dx is indicated in node positive cancer, but if it is, I would ask for it. It is another piece of information that helps you make the best informed decisions.
I did take chemotherapy, I took Taxol, Adriamycin, Cytoxin, every 3 weeks in my first 6 rounds. It is the hardest thing I have ever done. I was sick to my stomach and they did not have most of the nausea drugs they use today. I was exhausted, and I was achy in my bones. That was the first week of every cycle. The next two weeks I tried to make up for the work, and calories I missed, then back to treatment.
What I lost, my hair, all of it, eyebrows, eyelashes, everything!😳 I also lost my toenails but they grew back. The silver lining; I lost 65 pounds.❣️I mostly lost my patience with trivial whining, sadly, I still struggle with that, I have to work harder at empathy over a hangnail. 😂😂 What I gained was almost 18 years and counting to whine about it………oh, and that 65 pounds plus a few in the interim years.
Would I do it again, YES! Because you can do the hard things in order to have a lot more good things.
There is a conversation on connect, about “ lobular cancer, let’s support each other” where you can connect with folks, and I bet they have a lot of answers for you. Here is a link.
https://connect.mayoclinic.org/discussion/lobular-breast-cancer/
Have you talked to family and friends about this, what other feedback have you gotten?

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@auntieoakley

@kware75 I am unsure if oncotype dx is indicated in node positive cancer, but if it is, I would ask for it. It is another piece of information that helps you make the best informed decisions.
I did take chemotherapy, I took Taxol, Adriamycin, Cytoxin, every 3 weeks in my first 6 rounds. It is the hardest thing I have ever done. I was sick to my stomach and they did not have most of the nausea drugs they use today. I was exhausted, and I was achy in my bones. That was the first week of every cycle. The next two weeks I tried to make up for the work, and calories I missed, then back to treatment.
What I lost, my hair, all of it, eyebrows, eyelashes, everything!😳 I also lost my toenails but they grew back. The silver lining; I lost 65 pounds.❣️I mostly lost my patience with trivial whining, sadly, I still struggle with that, I have to work harder at empathy over a hangnail. 😂😂 What I gained was almost 18 years and counting to whine about it………oh, and that 65 pounds plus a few in the interim years.
Would I do it again, YES! Because you can do the hard things in order to have a lot more good things.
There is a conversation on connect, about “ lobular cancer, let’s support each other” where you can connect with folks, and I bet they have a lot of answers for you. Here is a link.
https://connect.mayoclinic.org/discussion/lobular-breast-cancer/
Have you talked to family and friends about this, what other feedback have you gotten?

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@auntieoakley Thank you so much for sharing. I am grateful for every piece of information I can get. She said she would order the onco score but knows it would be low and cause conflicting information and that she recommends chemo because of the spread to the node. I'm so confused today as I just found all this out yesterday. I have a wonderful support system 🙏❤️ and am trying to reach out to as many women who have traveled this journey and survived. Thank you again for sharing and for sending the link to that feed. So wonderful that you have almost 18 years of goodness to be thankful for! 💙

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I was diagnosed 5/24/22 with stage 2B invasive ductal carcinoma, EP/PR neg/HER2+ (grade 3…so very aggressive) 3.5cm tumor with 2 lymph nodes involved. While I resisted chemo at first (sad to say, I distrust the medical system that seems to only push pharmaceuticals), I knew of no other resources and so let myself be rushed into chemotherapy (within 2 weeks of diagnosis!)

I survived the chemo….however I did take a lot of supplements which my oncologist was “ok” with…and I think because of that, my worst side effects were bowel issues, mouth sores, lack of appetite due to the sores and an awful metallic taste, some fatigue…..absolutely no nausea or bone pain. Yes, of course I lost my hair.

Ironically, near the end of chemo (while I’m awaiting surgery) I found a local naturopathic nurse practitioner from whom I’m now receiving high dose iv Vit C and a ton of supplements and off-label drugs. Chemo targets fast-growing cells but cancer STEM cells (which produce many daughter cells and can cause a recurrence years later) are slow growing and often survive or become resistant to chemo; Oncologists don’t tell you those 2 facts. High dose iv C kills these stem cells but doesn’t harm your healthy cells. As of yesterday 10/21/22 I’ve had 7 iv’s…started at 35grams but the last several were 100 grams…. I’ve had them twice a week.

I can’t recommend *enough* the book “How To Starve Your Cancer”….which is the protocol we’re following. In 2 days I get an ultrasound before scheduling my mastectomy and I’m anxious to see how much more my tumor has shrunk since my last u/s in mid August. Also, Thomas Seyfried (Phd) wrote “Cancer as a Metabolic Disease.” As well as Dr Eric Berg’s wonderful YouTube channel, the Ketogenic diet (just watched a lecture by Dr Dominic D’Agostino on YT re: the benefits of keto diet and fasting on cancer (Dr D’Agostino has done some research with Prof. Seyfried.)

Those are the main sources I’ve learned from (as well as reading hundreds of studies on PubMed)…..and knowing what I know now, I’m not sure I would’ve done the chemo route. I *may* have, but I would’ve also done the iv C therapy in CONJUNCTION with the SOC (standard of care) protocol.

Good luck….take the time (if you can) to do your own research because you ARE your own best advocate.

Editor's Note:
High-dose vitamin C: Can it kill cancer cells? https://www.mayoclinic.org/diseases-conditions/cancer/expert-answers/alternative-cancer-treatment/faq-20057968

From Mayo Clinic:
Interest in using very high doses of vitamin C as a cancer treatment began as long ago as the 1970s when it was discovered that some properties of the vitamin may make it toxic to cancer cells. Initial studies in humans had promising results, but these studies were later found to be flawed.

Subsequent well-designed, randomized, controlled trials of vitamin C in pill form found no such benefits for people with cancer. Despite the lack of evidence, some alternative medicine practitioners continue to recommend high doses of vitamin C for cancer treatment.

For more in-depth information:
- Intravenous High-Dose Vitamin C in Cancer Therapy https://www.cancer.gov/research/key-initiatives/ras/ras-central/blog/2020/yun-cantley-vitamin-c

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@chopin51 thank you thank you thank you! Wonderful information and resources that I will definitely be using. I was posed the question, "what is the rush?" What a great question...and you reminded me that I do have time. While I will not wait too long, I will do my diligence and continue to advocate for myself. ❤️
I was so scared to get a bi lateral mastectomy, I just knew I couldn't do it. But, I did! And so can you! You will be ok. Does it suck? Absolutely! But you have already survived so much! I am 9 days out and I am doing very well. My surgeons gave me a 3 day nerve blocker, thankfully. The pain has been manageable for me. The drains...dreaded drains.. are uncomfortable and annoying - But still very manageable. I hope and pray that everything will go well for you and i too would love to know how much the tumor has shrunk. You got this! Stay strong. And, thank you, again ❤️🦋

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@kware75

@chopin51 thank you thank you thank you! Wonderful information and resources that I will definitely be using. I was posed the question, "what is the rush?" What a great question...and you reminded me that I do have time. While I will not wait too long, I will do my diligence and continue to advocate for myself. ❤️
I was so scared to get a bi lateral mastectomy, I just knew I couldn't do it. But, I did! And so can you! You will be ok. Does it suck? Absolutely! But you have already survived so much! I am 9 days out and I am doing very well. My surgeons gave me a 3 day nerve blocker, thankfully. The pain has been manageable for me. The drains...dreaded drains.. are uncomfortable and annoying - But still very manageable. I hope and pray that everything will go well for you and i too would love to know how much the tumor has shrunk. You got this! Stay strong. And, thank you, again ❤️🦋

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Thanks for your kind reply. I’m glad you find this helpful…I wish I’d known this information 5 months ago. 🙂

Part of me wants to see if I can kill this tumor withOUT surgery, just with this protocol alone…..but I don’t know if I can do it. I don’t know if there’s any other way to determine if I’ve achieved NED (No Evidence of Disease) without surgery to get a pathology report. I intend to ask this question of my oncologist at our next appointment.

If I do go ahead with surgery, it will only need to be SMX….with a lift/reduction to the non-cancerous breast. Best wishes to you! There definitely ARE alternatives to chemo and radiation (which I will NOT be doing, either.)

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@kware75

@chopin51 thank you thank you thank you! Wonderful information and resources that I will definitely be using. I was posed the question, "what is the rush?" What a great question...and you reminded me that I do have time. While I will not wait too long, I will do my diligence and continue to advocate for myself. ❤️
I was so scared to get a bi lateral mastectomy, I just knew I couldn't do it. But, I did! And so can you! You will be ok. Does it suck? Absolutely! But you have already survived so much! I am 9 days out and I am doing very well. My surgeons gave me a 3 day nerve blocker, thankfully. The pain has been manageable for me. The drains...dreaded drains.. are uncomfortable and annoying - But still very manageable. I hope and pray that everything will go well for you and i too would love to know how much the tumor has shrunk. You got this! Stay strong. And, thank you, again ❤️🦋

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Oops, the books title is “How To Starve Cancer” by Jane McLelland

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@kware75

Hi. Initially it was stage 2a, then oncologist said stage 1b, low grade, slow growing. She said she didn't order the oncotype because it would be low and cause conflicting information. Estrogen receptor postive but not her2. She recommends 5 months chemo, followed by radiation-33 treatments, followed by removal of ovaries and endocrine therapy. I am so overwhelmed. She said because it spread to lymph nodes that is is safe to assume that it has traveled elsewhere in my body.

Jump to this post

@kware75 and @auntieoakley the Oncotype is used for 1-3 nodes. Micro mets in one node isn't too different from lymphovascular invasion, which I had, and I did not have chemo thanks to the Oncotype.

If your doctor won't order one, I think a second opinion would be helpful.

How does your doctor "know" the Oncotype will be low? There is no way to tell in advance. Thirty percent of grade 3's have low scores and grade 1's may have a high score. Of course, most results are as expected but you cannot predict.

I know women who had a positive node and did not do chemo. It all depends. If you are making the choice, I have you have correct information to base it on.

I have never heard that if it makes it to the lymph nodes it has traveled elsewhere. I have heard that shows the cells "want to go somewhere" and have the capacity to travel, but not that they have.

If your cancer is highly responsive to estrogen, hormonal meds can help a lot without chemo. The Oncotype is really important to guide your treatment.

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@windyshores

@kware75 and @auntieoakley the Oncotype is used for 1-3 nodes. Micro mets in one node isn't too different from lymphovascular invasion, which I had, and I did not have chemo thanks to the Oncotype.

If your doctor won't order one, I think a second opinion would be helpful.

How does your doctor "know" the Oncotype will be low? There is no way to tell in advance. Thirty percent of grade 3's have low scores and grade 1's may have a high score. Of course, most results are as expected but you cannot predict.

I know women who had a positive node and did not do chemo. It all depends. If you are making the choice, I have you have correct information to base it on.

I have never heard that if it makes it to the lymph nodes it has traveled elsewhere. I have heard that shows the cells "want to go somewhere" and have the capacity to travel, but not that they have.

If your cancer is highly responsive to estrogen, hormonal meds can help a lot without chemo. The Oncotype is really important to guide your treatment.

Jump to this post

@windyshores thank you for your response - very helpful! ❤️ I was so confused yesterday when she told me that about the oncotype score because during our first visit in August she explained how important it was in determining chemo therapy. She did order the oncotype after our discussion; thankfully. So I will have that info in about 3 weeks. And yes, I am definitely getting a second opinion. Thanks again!

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