Stage II w/Lymph Node Involvement

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  • cathy67
    cathy67 Member Posts: 411
    edited April 2022

    I went for mammogram and ultrasound today, unfortunately it was not good today!!!

    Since I reported the lump I found, so they re scheduled my routine from June to April. Mammogram looks no difference, even though they checked my lump, then I went for ultra sound, the lump is no problem, but they found another suspective area, which needs biopsy finally, it is scheduled on May 4. I have not heard whether it is a high suspection or low suspection, the category of the report, I can get report from doctor by this Friday.

    I don't know whether this is a good news or bad news. If I had not found that lump, this area won't have chance to be discovered earlier, mammogram fine won't lead to ultra sound.

    I know lots of women have successfully experienced 10 plus years after diagnosis, did they have something happened like what I got today? I pray.

  • whimsicalzaadugirilife888
    whimsicalzaadugirilife888 Member Posts: 11
    edited May 2022

    Thank you for coming back and posting the positive outcome :-) Love to hear you are doing well. It gives hopes to several who have been following this thread.

  • whimsicalzaadugirilife888
    whimsicalzaadugirilife888 Member Posts: 11
    edited May 2022

    Warrior517 - Thank you for coming back and posting the positive outcome :-) Love to hear you are doing well. It gives hopes to several of us who have been following this thread and still in the thick of it.

  • tsquare
    tsquare Member Posts: 19
    edited July 2022

    Hello! I am hoping to get feedback from others on treatment decisions for someone in my situation. I am 4 weeks post surgery, and was wondering if anyone experiencing a similar situation can kindly advise me on what might be coming and what to expect maybe.....

    I was diagnosed with ILC stage 2 with 3 positive axillary nodes. I had left mastectomy (2.5 cm tumor) and three positive nodes showed macrometastasis and extranodal extension present.

    I am waiting for appointment with oncologist. Meanwhile I am trying to learn about different treatments and what to ask and how I can have better knowledge of what is coming so I can make decisions or at least understand different options if any.

    Thank you.

  • brittonkb
    brittonkb Member Posts: 81
    edited July 2022

    tsquare - Has surgery been your only treatment thus far? I had a lumpectomy for (what they thought was) a 2 cm IDC without lymph node involvement. It turned out to be 4.5 cm with 3 of 4 nodes positive including extranodal extension. Despite a “low” oncotype and mammaprint (did both) my team thought it best to have a lymph node dissection (ALND) to remove all level 1 & level 2 lymph nodes, followed by chemo and then radiation. Luckily the ALND did not result in any additional positive nodes. There was a lot of back and forth among my doctors and discussions with experts at other cancer centers to determine a plan of action. It definitely wasn’t straight forward. I know my age was a factor in aggressive treatment too (I was 48).

  • tsquare
    tsquare Member Posts: 19
    edited July 2022

    @brittonkb thank you for writing back.

    Yes, so far I just had mastectomy surgery. I have been through all kind of imaging before surgery, and was cleared of Mets to other parts of the body.... I kind of did it the other way around ! But the surprise was when I got my pathology test with 3/3 positive nodes with extra capsular or nodal extension. So now I have no idea where I am heading next !!

  • pebblesv
    pebblesv Member Posts: 486
    edited July 2022

    Cathy67 - Hope everything is OK? Any further updates? I have not checked in in a few months so only just saw your updates. Hope they figured out the lump and there’s an action plan for you.

    t square - here’s a useful article I found when deciding on my next steps. Basically I opted out of the full axillary node dissection due to the high risk of lymphedema and also this study that showed long term survival rates for those who did the sentinel mode biopsy were no worse than those who did the full ALND. I did do a full radiation treatment and hormone therapy after surgery. Anyways make the decision that’s right for you. All I can share is I have no regrets on my decision as I had very few side effects from all the treatments, no lymphedema, and have been in the clear for 4 years now! Actually just received an “all clear” mammogram today. Hope that trend continues to hold. But even if it doesn’t, we just keep fighting.

    https://news.feinberg.northwestern.edu/2017/10/10/trial-finds-no-survival-benefit-to-aggressive-breast-cancer-procedure/

    Warrior517 - THANK YOU for starting this thread and also coming back over a decade later to let us know you are a survivor! It means a lot to have examples like you.


  • cathy67
    cathy67 Member Posts: 411
    edited August 2022

    pebblesv,

    Thanks for your caring, the biopsy back normal! God saved me again!

    I wish this kind of scare will never happen again, my next checkup will be October, have not got accurate date now, they will do mammogram and ultrasound together this time.

  • pebblesv
    pebblesv Member Posts: 486
    edited August 2022

    cathy67 - SO glad to hear the biopsy came back normal! Congratulations on thanks for the update. Hopefully things will stay stress-free for you going forward.

    I just had my mammogram and luckily it came back clear and my oncologist even congratulated me on great mammogram results! It's so stressful every time we go through this. I'm glad you are back on the NED train.

    Sending hugs!

  • cathy67
    cathy67 Member Posts: 411
    edited August 2022

    pebblesv,

    Great news!



  • lillyishere
    lillyishere Member Posts: 786
    edited September 2022

    tsquare, since you have ILC, I believe the next treatment will be one of AI (aromatase inhibitor) if you are menopausal. Most MO start with letrozole since it is the most effective of 3 however, if you have severe SE from letrozole, they can recommend another one. In case you are pre-menopausal, OS and AI or tamoxifen alone. Most of us with ILC, would suggest you ask your MO to go with AI since tamoxifen is not very effective for ILC. Let us know what your MO suggests.


  • smiling_brenda
    smiling_brenda Member Posts: 24
    edited March 2023

    I would liketo know if anyone on this thread who are stage 2 with lymph node involvement ultimately became stage 4. I am not stage 4 but it is generally a constant worry of mine. Thank you for sharing

  • cathy67
    cathy67 Member Posts: 411
    edited March 2023

    Brenda,

    This year is also my 4th year, I always worried about this. People like to set 5 years as milestone, what we can do is to live, and celebrate that milestone when it comes finally。

  • lillyishere
    lillyishere Member Posts: 786
    edited March 2023

    We had members we lost who went from stage 1 to stage 4. One of them was Shetland Pony that I liked very much. My MO told me slow-growing cancers that are mostly hormone positive have a higher recurrence risk in the first 10 years and then the curve of recurrence starts going down. I guess that's why we stay on medications and checkups for 10 years. I tell myself not to borrow the worries.

  • cathy67
    cathy67 Member Posts: 411
    edited March 2023

    Thanks Lily,

    We had quite similar diagnosis at almost same time, I am really very worried about every checkup, what I can do, is to enjoy the 6 months between them.

  • clars
    clars Member Posts: 46
    edited May 2023

    Hello everyone! I’ve read this thread a million times and am so grateful for everyone who has shared their stories.

    I am still in treatment, 6 weeks of chemo to go, and then surgery. I’m aware my stage etc might change post surgery but for now I am Stage 2B Grade 3 IDC, with at least 3 lymph nodes involved. I have bilateral breast cancer - what fun - but the tiny tumour in my left breast is grade 1 and no lymph node involvement there.

    I so hope I can be around the post success stories in the future x

  • iamnobird
    iamnobird Member Posts: 229

    Hey @clars

    I have a similar diagnosis to you. I am grade 2, stage 2a with an 11mm IDC tumor and 1 lymph node involved. I have 12 weeks of chemo to go, then rads, then my Phesgo shots.

    Anyways. I had a diagnosis of pure DCIS and MRI/ultrasound did not pick up the IDC or the positive lymph node. So it was a shock to see my pathology after my mastectomy. I had 9cm of grade 3 HER2+ DCIS so we were expecting something crazy. But the lymph node surprised me.

    Anyways. I am so thankful for all of these stories on this thread. Thanks to everyone who has returned to share hope and comfort. It is really so helpful when you are in the thick of it. I hope to do the same one day.

  • clars
    clars Member Posts: 46

    Hi @iamnobird good luck with the rest of your treatment! Yes the stories here are really a huge boost, aren’t they? I also hope to be that flicker of hope for others in the future. I’m sure we both will be x

  • azjs
    azjs Member Posts: 19

    Hi everyone, It looks like this thread has not been active in a while, but I would love to hear thoughts from anyone who is following this thread and has been in a similar situation. I was diagnosed in late February 2023 and my MO started me with 4 rounds of TC chemo based on my oncotype score of 29. In late July, I had a mastectomy with immediate reconstruction on my left side. (I had a right mastectomy 6 years ago due to extensive DCIS.) The three sentinel lymph nodes were negative, but they also took two lymph nodes that were near my tumor (which was in my lower axilla). One of the nodes was negative but the other had a 2.5 mm metastasis. The positive node was 4 mm from my tumor. My tumor was 13 mm, grade 2. My tumor is ER+/PR+. I seem to be in a gray area of whether I need radiation or not and am just wondering what others in a similar situation were advised and what you did. I am 55 years old. Thank you so much!

  • iamnobird
    iamnobird Member Posts: 229

    I don’t have the same situation, but I am about to have radiation for one positive sentinel node. My node metastasis was 7mm and primary tumor was 11mm, grade 2. A PET scan didn’t show any further positive nodes, but my imaging before surgery didn’t show the IDC tumor or the positive sentinel node so I take all of that with a grain of salt. I have just done 4 months of chemo so hopefully there is absolutely nothing there. I also have had immediate reconstruction to DIEP back in March.

    My oncologist has recommended radiation for me. I am HER2+ so that likely plays a role as well. I am nervous about it, but the radiation team has a very good machine and are used to radiating after reconstruction. My microsurgeon doesn’t expect it to have too much impact and says we can address any issues in my phase 2 of the reconstruction. Still, I get it. It is nerve wracking. I start in mid September and will have 15 sessions. The main target is my axilla and lymph node areas.

  • maggie15
    maggie15 Member Posts: 1,337

    Based on my experience I would ask detailed questions before undergoing nodal radiation if in a gray area. I also was in a different situation (lumpectomy for a 3.2 cm tumor, oncotype 24 so no chemo, 1/3 nodes, LVI) so I had planned to have whole breast radiation. Because of the positive node and LVI axillary radiation was added. This, however, can escalate the radiation dose to other organs and increase the risk of rare but serious side effects. Find out how much the planned dose will affect the lungs, heart, throat, etc. and ask the doctor to review your records if you have other medical issues in the chest/neck area.

    My rads treatment caused breast lymphedema and nerve damage in the radiation field but these are somewhat common non life-threatening SEs. It also resulted in radiation induced pulmonary fibrosis, very rare but life limiting. If the lungs are damaged most people develop pneumonitis first which can be effectively treated with steroids but a few like me skip that warning stage and end up with this disease. I thought it was just bad luck until my pulmonologist told me that a lung cancer radiologist would have seen the red flags for subclinical ILD in my medical record (Barrett's esophagus, upper GI bleed) and recommended against radiation. I survived the initial bout and do everything I can to keep progression at bay but that means living like I am immunocompromised. There are a few others who post on this site who have serious SEs from radiation but we are a small group.

    RIPF generally has a longer life span than MBC so depending on your situation the small risk can be well worth the benefit. There are never any guarantees, however, when it comes to medical treatment.

  • azjs
    azjs Member Posts: 19

    Iamnobird, Thank you so much for sharing your experience and treatment plan. It does sound like our situations are similar if not the same. I am wishing you all the best with your radiation treatment. From what I have heard, the radiation is easier to get through than the chemo, so I am hopeful on that end. I will post again if I move forward with radiation so we can share stories.

    Maggie15, I am so sorry for what you have gone through and continue to go through. That sounds really hard. Thanks for sharing and for your advice. You have given some good questions to ask the radiation oncologist. The chemo and mastectomy were easy decisions for me, but this one feels so much harder, just not as clear cut. I really appreciate you sharing your insight.

  • iamnobird
    iamnobird Member Posts: 229

    @azjs I wish you lots of clarity when making the decision. This stuff is so hard! Wishing you smooth healing and peace with whatever you decide ♥️.

  • azjs
    azjs Member Posts: 19

  • simpop7
    simpop7 Member Posts: 8

    @azjs I’m glad I found this thread and reading through all the information. I am also a gray area for radiation. I had ILC, 4.2cm tumor, with SLND and I had a micromet. My micromet is what is bringing up the question of radiation, and my age. I’m leaning towards not doing radiation and praying the tamoxifen takes care of any remaining cells. It’s hard to know if the SE of radiation are worth only a small benefit of 5% to radiation.

    Did you end up doing radiation? How are you doing?

  • azjs
    azjs Member Posts: 19

    @simpop7 these are hard decisions. After much deliberation, I decided to do radiation. I start next week. I am looking at this as one more way to make sure this doesn't come back. Hoping radiation is easier than chemo on my body. Best of luck with your decision. Sending you healing thoughts.

  • jrnj
    jrnj Member Posts: 408

    maggie, sorry that happened to you

    azjs and simpop7, I do think radiation is worth the risk. I had 2 lymph nodes positive and lvi. They used to take out all the lymph nodes. But now they don’t do that anymore to prevent lymphedema. And I never understood why radiation is automatic with lumpectomy but not mastectomy. The treatment is nothing compared to chemo. Also people don’t realize the meds can have significant side effects. I live in misery every day. Many stop taking them. My fear of cancer is greater than my misery. So you want to do what you can now in case you decide to quit the meds. Good luck!

  • simpop7
    simpop7 Member Posts: 8

    @jrnj Im sorry you’re having such a hard time with the meds. That is always a concern. Everything has side effects we just don’t know which will have the least side effects.

    @azjs I hope your radiation has gone well this week. I decided not to do it and started the hormone therapy.🙏 we are now talking about switching to lupron shots and AI instead of tamoxifen because I am not doing radiation.

  • azjs
    azjs Member Posts: 19

    @jrnj thanks for your words of encouragement. Your reasoning makes a lot of sense. So sorry you are struggling with the meds. I agree that we have to keep the end goal in sight.

    @simpop7 I have finished 6 of 15 sessions of proton therapy. So far so good. I came to peace with my decision and am hoping for minimal side effects. Sending good wishes to you for the next phase of your treatment. I am hopeful the worst is over for both of us!