Topic: New diagnosis IDC stage IV + lymph node

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Jun 28, 2022 04:51PM

Posted on: Jun 28, 2022 04:51PM

lilygizmocat123 wrote:

I just got diagnosed with IDC stage 4 right breast and right armpit lymph node. They haven't biopsed the left breast yet but they want to asap! My question is isn't more important to see if the cancer has spread anywhere else in my body before the slightly suspicious left breast??

Its been really hard getting STRAIGHT answers from any of these doctors! They have a protocol they want to follow without and deviation! IF I find out it is in other parts of my body/organs that would greatly effect what treatment options I would consider or not consider?? Also if anyone else has IDC 4 please chirp in and let me know how long you've had it any information would be helpful!

Quality of life is more important to me then "quantity"

So I'm going to have some tough decisions soon! I realize once you make those decisions you can't really change your mind later! I don't want to be halfway through some treatment and regret my decisions least thats my goal anyway! You don't get alot of "do-overs" with this horrific disease!! Thank you!!

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Jun 28, 2022 04:54PM moth wrote:

armpit lymph nodes positive do not lead to stage IV diagnosis. Do you have mets somewhere else? Where are your tumors & what size?

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- Surgery 12/12/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole breast: Breast Dx 2/2020, IDC, Left, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/15/2020 Femara (letrozole) Radiation Therapy 3/3/2021 External Local Metastases 3/3/2021 Radiation therapy: Bone Targeted Therapy 1/1/2022 Trodelvy (sacituzumab govitecan-hziy) Chemotherapy 6/1/2022 Other
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Jun 28, 2022 05:42PM - edited Jun 28, 2022 07:24PM by exbrnxgrl

As moth said, positive axillary lymph nodes are not considered stage IV. Metastatic bc would be spread to distant organs such as brain, lungs, liver or bones so it is unclear why you think it’s stage IV. Even women with numerous positive lymph nodes are notstaged as metastatic. Metastasis at initial diagnosis only occurs about 6% of the time. I know this can get very confusing and there is a lot of info being thrown at you but please double check as you may not be stage IV if only axillary node/s were positive. Even with nodal involvement, scans to check for mets areusually not done, especially in the absence of symptoms. IDC is the most common type of invasive bc. The majority of women on the stage IV forums, though not all, have IDC. Again please double check but positive armpit nodes are not stage IV. Also, if you are not satisfied with your MO's find new ones ASAP! It is important that you have a comfortable and mutually respectful relationship with your mo so you are not confused! Take care.

Dx IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, ER+/PR+, HER2-
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Jun 29, 2022 02:06AM sondraf wrote:

Was there something suspicious in the left breast as a result of a breast MRI? Bilateral bc is fairly rare.

However, your instinct to get further scans done is correct. Right now you are not Stage IV, but axillary spread would get you a ticket to a pelvic/chest CT and bone scan here in the UK. I had axillary spread and until those scans came back showing bone mets, was classed as Stage III. Doctors here also don't tell you anything, so if you are reading your results from a letter or something with no one to explain what is going on, it can be really distressing. I've been there.

"The closer we come to the negative, to death, the more we blossom" - Montgomery Clift Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Hormonal Therapy 11/28/2019 Femara (letrozole) Targeted Therapy 11/28/2019 Ibrance (palbociclib) Surgery 11/28/2021 Lymph node removal (Right): Underarm/Axillary; Mastectomy (Right) Targeted Therapy 3/1/2022 Lynparza (olaparib)
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Jun 29, 2022 04:53AM gb2115 wrote:

Hi there, sorry to hear about your diagnosis. I agree with the others. If they are telling you that you're stage 4, please ask them for clarification if cancer has only been found in your lymph nodes. I have had lymph node positive cancer twice, and neither occurrence was stage 4. You're not considered metastatic until it's found beyond the nodes in other parts of your body.

Hang in there.

First Dx IDC in 10/16 at age 38, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Lumpectomy + radiation + tamoxifen. Second Dx IDC recurrence in original location 5/21. 1.3 cm ER/PR+, Her2 -. Grade 2. 2/2 nodes. UMX + AC/T + Zoladex/Exemestane + Zometa.
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Jun 29, 2022 01:16PM exbrnxgrl wrote:

“My question is isn't more important to see if the cancer has spread anywhere else in my body before the slightly suspicious left breast??“

I forgot to answer your question directly. If you were told that you are stage IV that means the cancer has already spread elsewhere in your body. Exactly where were you told you have mets and how were they discovered if you have not had imaging and/or a biopsy to the suspected site of metastasis? Metastatic disease is not determined by a breast biopsy.

Dx IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, ER+/PR+, HER2-
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Jun 29, 2022 07:38PM lilygizmocat123 wrote:

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Jun 29, 2022 07:50PM - edited Jun 29, 2022 08:02PM by lilygizmocat123

Its a very LARGE fast growing tumor i will say that!

I'm going to shoot straight from the hip- they want to chemo me asap, at least one mastectomy maybe two right off the bat! They are pushing to for left breast biopsy before checking other parts of the body - I've got LARGE tumor right and I mean BIG and 4 other lymph nodes as of today ( that I know of) IF this has spread to lungs, chest, liver ect ect I do not see the point of them doing the double mastectomy and lymph node removal! I am currently fighting for them to check the rest of my body first! THEY keep diverting me back to breasts and lymph nodes only! IF it has spread more I would probably forgo the current plan they want! In my opinion its really just drawing out the inevitable! I wanted to know if this is typical?? Planning out the first surgeries BEFORE scanning my whole body?? Especially since its already spread to 4 lymph nodes. I personally think they know it HAS spread ( stage IV diagnosis) Even though a 4 can be bc of tumor size ( I don't buy it!) I think its in lungs! My guess is lungs and they saw it in all the mammograms, sonogram and ultrasounds I've had but they are hiding it from me! I've already said I don't see the point of all this chemo and surgery if it has spread so they KNOW what I'm thinking. Is this normal behavior??

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Jun 29, 2022 08:37PM - edited Jun 30, 2022 06:56PM by parakeetsrule

This is a difficult time for you but that's no excuse to be so rude to moth. She (and others) were asking relevant clarifying questions in order to better answer your question. If you don't trust your doctors and their treatment plan, the solution is to stop and get a second or even third opinion.

Only the most horrible incompetent doctors would hide a Stage 4 diagnosis. If you think that's what happening, you need to get a new doctor ASAP instead of coming here and falsely accusing actual Stage 4 patients of engaging in pissing contests. We have no reason to do that. Don't take out your anger on anonymous people in a cancer forum.

Edit: this was in response to the post that has now been removed by moderators.

Stage 2 at 37, Stage 4 at 41. Cancer is dumb. Cookies are good. Dx 3/21/2017, IDC, Left, Grade 2, ER+/PR-, HER2- Radiation Therapy 11/6/2017 Whole breast: Lymph nodes, Chest wall Hormonal Therapy 12/8/2021 Faslodex (fulvestrant) Targeted Therapy 12/13/2021 Piqray (alpelisib) Dx IDC, Other, Stage IV, ER+, HER2- Chemotherapy AC + T (Taxol) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal (Left); Mastectomy (Left)
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Jun 29, 2022 09:30PM - edited Jun 29, 2022 09:31PM by wondering44


When I started here, I did not understand that metastatic did not mean stage IV, nor did I understand much about cancer. I have read and written posts where others asked questions to clarify the interpretation to assist in answering questions about the topic or to engage in the topic with a better understanding. Asking questions for clarification can help to alleviate miscommunications. The follow-up to Moth's questions reads (IMO) like a severe case of "road rage."

I sat with my therapist regularly for the first six months of my diagnosis to help me deal with the stress of my dx and lack of cancer knowledge. Consider talking to a therapist to get through the initial hump of emotions that come with a dx. Another option is to talk to a physician about a prescription to help with the cancer rollercoaster ride. It is a doozy going up and down the first loop.

The boards here have women who have a wealth of knowledge to share with other women about cancer. Moth is one of those women.

I didn't get a choice in getting cancer. I do get to choose how I live each day after. Surgery 8/18/2021 Lymph node removal (Right): Sentinel; Mastectomy (Right): Nipple Sparing Surgery 8/31/2022 Mastectomy (Left): Skin Sparing; Mastectomy (Right): Skin Sparing Dx DCIS, Right, 1cm, Stage 0, Grade 2, ER+/PR+, HER2- Dx DCIS, Right, 6cm+, Stage 0, Grade 3, ER+/PR+, HER2- Dx IDC, Right, 2cm, Grade 2, ER+/PR+, HER2- Dx IDC, Right, 6cm+, Grade 3, ER+/PR+, HER2-
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Jun 29, 2022 09:48PM - edited Jun 29, 2022 09:56PM by wrenn

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