Chemotherapy necessary - OR - anti-Hormone therapy -OR- both?

PSW
PSW Member Posts: 16

I am in my 60's and just diagnosed with ILC, Stage 3 estrogen and progesterone positive (pathology reports largest measurement was 6.2 cm) with 5 sentinel lymph nodes positive out of 10 that were taken. Tumor was odd shaped with many sides and lumpectomy had 6 unclear margins. Kaiser oncologists believe I need to start chemotherapy alone now with no hormone therapy until after 2nd surgery. Since this is hormone positive can I skip chemo and ask for anti-hormone alone? My PET scan was clean but I am being told that a free floating cancer cell could be anywhere in my body, trying to attach itself, and mutate from the positive hormone type. Does this sound possible? I was also told that the rate of recurrence for me is between 30% to 60% and that is another reason for chemo. Do I truly need chemo or are these oncologists just going "by the book" for traditional treatment?

I forgot to add that my ER+ was 100% and the PR+ was 90%. I assume then that hormone therapy would work well.

Comments

  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2016

    yes, you can decide on your treatment. AI drugs are good at killing er and pr positive cancer. Lilly55 might be a good one to ask. If I were you in would want to start hormone therapy right away but maybe they wouldn't allow it if you chose chemo. I mean at the same time, have you had an oncodx test? That would give a better idea of how effective chemo might be.

  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2016

    I didn't see you had 5 positive nodes that is probably why they are pushing chemo. I believe oncodx can be done for 2 nodes positive, not sure. I still think AI drugs are best against your type of cancer, they will most likely recommend them. I'd want to start ASAP.

  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2016

    member is lily55, she has a similar dx and I think she chose hormone therapy only

  • toomuch
    toomuch Member Posts: 901
    edited July 2016

    PSW - I'm sorry that you're newly diagnosed but glad that you found this board. Your post doesn't include the grade of your tumor, the percent ER or PR positive or the Ki67%. These are all factors that your MO may have taken into consideration when making his recommendation. They are important parameters along with the number of positive nodes and sub type that should be considered. The oncotype test is only approved for tumors with 1-3 positive nodes. There are women on this board who opted to use only antihormonals and those that decided to get chemo, complete radiation and take an AI or Tamoxifen If you are unsure about your MO's recommendations, I would highly recommend getting a second opinion, if possible at an NCI designated cancer center. Locations can be found at this link.

    http://www.cancer.gov/research/nci-role/cancer-cen...

    You may find it helpful to solicit advice from other women but ultimately, what's important is that you are fully comfortable with your treatment plan.

    I think that the most stressful time is when you are trying to decide on your treatment plan. I wish you the best.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2016

    Hi!

    I was Stage 3, and yes, chemo is typically recommended for women with large tumors and multiple compromised lymph nodes. Stage 3 is considered "locally advanced" breast cancer, and there is a greater chance of recurrence/lower survival rates for women in this stage rather than Stages 1 and 2.

    Both chemotherapy and hormonal therapy are systemic treatments, in that their impact goes beyond the breast area. Chemotherapy kills the cancer cells floating around in our bloodstream and lymph system. Hormonal therapy starves estrogen-fed cancer cells of the estrogen that is promoting their growth.

    As you can see from my signature, I did five months of chemotherapy, and I've embarked on ten years of hormonal therapy (Aromasin). I am doing both not only because I was Stage 3, but also because my cancer was aggressive (HER2+ and Grade 3).

    Could you get away with just hormonal therapy? To me, it would depend on the aggressiveness of the cancer and how comfortable you feel with living with a higher chance of recurrence. But, these are questions you can discuss with you oncologist and additional oncologists, should you choose to seek a second opinion.

    Best wishes!

  • Lily55
    Lily55 Member Posts: 3,534
    edited July 2016

    i had 7 positive nodes out of 14........I only had hormone therapy as was 95% ER pos and also 85% prog pos.........I am 4 years 2 months from diagnosis........I waited until I knew what was right for me and that I would not regret later. I am still fine with my decision despite a couple of recent cancer scares, both of which were ok in the end as turned out not to be.......

    Chemo does not kill cancer stem cells, and these are the dangerous ones in terms of metastases, your doctors gave you a very simplistic version....

    You really are at the worst point..........take care......

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2016

    I was 6/11+, stage II, high grade 1 highly ER/PR+ (like 1000 percent, ha ha), 2 c. and chemo AND AIs were recommended. I did the whole treatment and it was definitely do-able. Are you not wanting to do chemo because you are fearful of it? Or because you are against it for other reasons? I was afraid of it, definitely--the hair loss, the sickness, side effects etc. but when I considered what I'd think if I didn't follow the recommended rx (backed by a second opinion, see my final comment end of this post), and if I did get a recurrence--would I be able to live with myself for not throwing every tx at it the first time around?

    I got a second opinion after I met with my MO who was referred by my surgeon. I checked up on her through some friends that worked at Mayo Hospital,and they said my MO was highly recommended. Then I went to MD Anderson and got another oncologist to review my MO's recommendations and she concurred.

    You might consider getting a second opinion before you decide against chemo completely.

    Claire

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited July 2016

    I would recommend registering at the NCCN's website and reading the breast cancer treatment guidelines. Besides a second opinion, if you are still unsure, request that your case be presented to a tumor board.


    That said, the NCCN's standard of care does recommend chemo for tumors whose characteristics are like yours. Unless you have pre existing conditions that the risks of chemo might outweigh the benefits, physicians will recommend chemo. "Going by the book" protects you and THEM. That is also why there is a Standard of Care. Ultimately, it is your choice.



    I wish you well.

  • Wallabi
    Wallabi Member Posts: 2
    edited July 2016

    from all I have read and researched, stage 3 with positive nodes needs chemo to help prevent mastasis, followed by hormone therapy. Also, getting the biphosphonates like Prolia helps prevent your bones from getting mastisised bone cancer. Only an Oncotype DX or Mammoprint test could tell the genetics of your cancer to see how likely it is to spread. Was one done for you

  • PSW
    PSW Member Posts: 16
    edited July 2016

    Hi Wallabi - thank you for your email! I have been told that an Oncotype DX test can not be done on me since i have 5 lymph nodes that were positive. Do you know this to be true? I also have never heard of a Mammoprint test. I will be talking with my nurse navigator today and will ask her these questions. I will also ask about the help of Prolia!

  • PSW
    PSW Member Posts: 16
    edited July 2016

    Thank you Meow 13 for your reply! My oncologist is not doing an Oncotype test in that I did have more that 3 lymph nodes with cancer. It looks like I will be getting chem next.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2016

    PSW - Oncotype is not usually done if you have more than 3 positive nodes as the assumption is that chemo is needed, and the test was actually designed for node negative patients. Mammaprint is a similar type of genetic assay test, but it is very likely that with node positive disease that your recurrence risk will come back in the high category. Insurance may not cover the test (approx. $5,000) due to the number of positive nodes and standard of care being chemotherapy for this patient profile. As to the question of whether you need chemotherapy - nobody really knows - but your cancer proved it was already on the move with half of your removed nodes positive. Only you can make the decision about how much risk you are willing to undertake, both from chemo and from not doing chemo. I also just wanted to clarify - Prolia is actually not a bisphosphonate, but rather a monoclonal antibody bone strengthener. Generally, due to the cost, you need to start on a bisphosphonate like Actonel, Boniva, Fosamax or the IV Reclast and be unable to use them before insurance covers Prolia - it is a considerably more expensive drug. Some have been lucky and been approved for the twice yearly subcutaneous injection of Prolia without first having to go through the bisphosphonates. Aside from some trials, and forward thinking oncologists who are prescribing anti-hormonals prior to surgery, it is the normal treatment chronology to follow surgery with chemo, then radiation, then hormonal therapy. Best to you!

  • PSW
    PSW Member Posts: 16
    edited July 2016

    Thank you "too much" for your response! I did just add now that my ER+ was 100% and the PR+ was 90%. The grad of the tumor is 2 (which i forgot to add in -opps).

    Your information has been very helpful! I am getting a 2nd oopinion tomorrow!

  • PSW
    PSW Member Posts: 16
    edited July 2016

    Thank you Elaine for your response! This has been a very difficult time to decide. Can I ask you how you did while receiving your chemotherapy? How are you doing now? Your detailed answers are greatly appreciated!

  • PSW
    PSW Member Posts: 16
    edited July 2016

    Hi Claire - thank you for your response! I am scared of chemo!!!! But i am also scared of the cancer coming back! I am actually getting a second opinion tomorrow and am pretty sure the I will be told the same. Did you end up with any permanent side effects from the chemo? thanks for your wonderful help!

  • PSW
    PSW Member Posts: 16
    edited July 2016

    Thank you Voracious reader for your response! I am scared of chemo but more scared of not doing enough right off! Tomorrow i get a second opinion! I appreciate your response!

  • PSW
    PSW Member Posts: 16
    edited July 2016

    Great information SpecialK! There is so much that I do not know and it seems like I have not been told. This is definitely not an easy decision!

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited July 2016

    Hi PSW:

    The Genomic Health website includes the "eligibility" criteria for Oncotype for invasive disease here, indicating those with hormone receptor-positive, HER2-negative disease, and either node-negative or from 1-3 positive nodes are formally eligible:

    "Eligibility" for Oncotype (Invasive disease): http://breast-cancer.oncotypedx.com/en-US/Professional-Invasive/OncotypeDXBreastCancerAssay/PatientEligibility.aspx

    The Agendia website is not quite as clear about eligibility for MammaPrint, but it can be inferred from the discussion of the validation studies for MammaPrint on this page, which mentions studies which included patients with "Up to 3 Positive Lymph Nodes (LN+)":

    Eligibility / Validation for MammaPrint: http://www.agendia.com/healthcare-professionals/breast-cancer/mammaprint/

    The recent MINDACT trial of MammaPrint included patients with 0 to 3 positive nodes.

    I am a layperson with no medical training, so do not hesitate to inquire with your treatment team to obtain expert confirmation and case-specific medical advice. Also, while you should feel free to discuss things with your nurse navigator, it is important to keep in mind that she also lacks the training of an expert medical oncologist, and for definitive advice on such a specialized technical question, you should also ask the medical oncologist.

    For other node-positive patients with up to 3 positive nodes:

    Despite these formal "eligibility" criteria from the commercial test providers, patients with up to three positive nodes should specifically ask their medical oncologist about how current consensus guidelines from ASCO and NCCN view these tests in the node-positive setting and specifically in patients with their exact nodal involvement.

    BarredOwl

  • Khanniganslp9
    Khanniganslp9 Member Posts: 29
    edited July 2016

    Hello Elaine,

    Thank you for your post. As I see you did neoadjuvent chemo, did your doctors see evidence of chemotherapy effect on the tumor? I did 5 months of chemo TCHP and they saw very little effect. My tumor was thought to be 2 cm in January (by physical palpitation, mamogram and ultrasound), and there was a lump that was felt that was about 2 cm that went away, or at least that flattened out, but then when the tumor was taken out, it was actually 5 cm in size. I had had a post-chemo, pre-surgery MRI before the surgery in June and they saw no evidence of disease, nothing. So we were surprised when it turned out to still be there, and to be much larger than expected. They now say that lobular tumors can be very difficult to see on scans and difficult to palpitate. My tumor was ER+ 95%, PR 5%, HER2+ by fish, 80% lobular, 20% ductal, grade 1, and no evidence of node involvement after chemo (0/5 nodes). They didn't do the oncotype test, nor did they do Ki67 pre or post. They postulated that there was very little effect of chemo on the tumor, most likely only on some of the ductal portion, but not on the lobular. I'm getting a second opinion at UCLA with Drs Mead and Slamon, basically to confirm the course of action from here on out. They are doing some further testing on tissue blocks from the tumor as well as tissue or slides from the pre-surgery biopsy. My doctor at Kaiser says that doing another round of chemo/a different regimin would be useless since we now know that my tumor was resistent to the very strong dose of TCHP. He recommends only hormonal therapies. I am currently on Herceptin for the rest of the prescribed year, and I just started the Aromatase inhibitor as well as the ovary function inhibitor (Femera and Luprin), and I am to start radiation therapy the week after next for 5 weeks. Is it true that taxotere and carboplatin, and chemotherapies in general, can have very little effect on ILCs and that it would be contraindicated to do more chemo? My worry is that if there are micrometastesis in my nodes or in by body, that since the chemo did nothing to kill off the large ILC, then I SHOULD get more chemo to try to kill off the micrometastesis . Any thoughts?

  • Khanniganslp9
    Khanniganslp9 Member Posts: 29
    edited July 2016

    If you do decide to go with the chemo, you will get through it. It's not fun, but you just have to take it one day at a time. For me, the first few days are fine, then on day three the side effects kick in. They lasted anywhere from 4 days to 9 days, then I felt weak but so much better. Then you have about a week of feeling pretty good. Then you start it all over. After it was all over (I did five rounds, one each 21 days), I recovered after the last 4- 9 day period, and only got better and better, able to get back to all my normal activities after 2 to 3 weeks. I am now almost 3 months out and my hair is growing back (still very short, but at least I'm not completely bald anymore). I don't have any of the digestion problems, skin dryness, or other side effects. The only one that has remained, but to a lesser degree than when on chemo, is the neuropathy in my feet. Now it just feels like a slight numbness. Kind of like you need a massage to increase blood flow to the feet, but massaging them doesn't make it go away. I'm getting used to this and in the big picture it's really not a big deal. The only time it is annoying is when I walk or hike for miles, and my feet just feel a little more tender than they would normally after walking some distances. I figure, if chemo does what it's supposed to do, to improve your chances of being cancer-free, these side effects are so minimal, and very worth the inconvenience. Best of luck.


  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2016

    Khan and PSW,

    I did have neoadjuvant chemo, and it wiped out the active cancer in my breast and my compromised lymph node. As a result, I decided to get a lumpectomy rather than a mastectomy. Khan, you are right that ILC sometimes reacts to chemo differently than IDC. I'm sorry to hear that your ILC was unchanged after CT. You are Grade 1, though, and chemo works best on quickly growing cancer (mine was Grade 3). Is your signature correct? If you are HER2+, I'm surprised you haven't had any targeted therapies like Herceptin and Perjeta.

    Chemo was OK for me. I worked through chemo, though I worked at home as much as possible. My boss also agreed to reduce my responsibilities during chemo. I felt that AC was worse that Taxol, mainly because it made me so spacey and unfocused. (I teach at a university, so I have to sound somewhat articulate in the classroom.) Taxol gave me mild diarrhea, which I controlled with Immodium. I'm doing well right now; I've had two clean mammograms and a clean PET scan. I'm on Aromasin and Zoladex, and those are not too bad.

    Best wishes, ladies!

  • PSW
    PSW Member Posts: 16
    edited July 2016

    Hi Khanniganslp9:

    Thank you for both of your responses! I appreciate your honesty that your Kaiser doctor admitted that your chemotherapy was not working on your ILC tumor. That is the first that I have heard of an oncologist admitting this. Did you get a second opinion from UCLA with Drs Mead and Slamon? Did they agree with the Kaiser doctor that chemo would not help? If you know, what types of test(s) would UCLA have done - such as rate of cell growth (though Grade 1 is slower I believe). I am pleased to learn that they let start on hormonal therapy. My oncologist seems stuck to the "book" routine of only hormonal therapy after a second surgery and radiation. I hope you are doing well!

  • PSW
    PSW Member Posts: 16
    edited August 2016

    Hi all! I would love to learn from any of you as to how you are doing now if you chose not to do any chemotherapy for your ILC but did complete/are completing surgery, radiation, and anti-hormone drugs. I was told yesterday from my Kaiser oncologist, as a scare tactic I believe, that without chemo I have an 80% risk of dying from the spread of any free floating cancer cells within the next 3 years. what is your response to this statement? And let me know how you are doing please!

  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2016

    I had one ILC and was recommended chemo with oncodx of 34. They were concerned since my pr was less than 1%, but er 95%. I doing great, I did 4 years AI.

  • Optimist52
    Optimist52 Member Posts: 302
    edited August 2016

    PSW, Could you complete your diagnosis/treatment details so we can see them? I think the 80% figure sounds extremely unlikely and haven't heard of a statistic like that being given before. As you say, it may well have been a 'scare tactic'.


  • PSW
    PSW Member Posts: 16
    edited August 2016

    I don't exactly know why but my diagnosis/treatment was posted before and I don't find it now. So Sorry!

    here is the diagnosis:

    Invasive or Infiltrating Lobular Carcinoma (ILC) - May 11, 2016 Right, 6cm+, Stage IIIA, Grade 2, 5/10 nodes, ER+/PR+, HER2-

    My treatment plan started with a biopsy which a mammogram/ultrasound had set the size at 4.5. Then a lumpectomy increased the size to 6+ cm with 6 margins that were not clear. No Ki67 or OncoType test was done as I was told the treatment plan was easily decided without those scores along with the fact that I have 5 positive nodes. Now I am on a TC chemotherapy regiment, 4 sessions every 3 weeks and my 2nd session is tomorrow. Following this will be another surgery which I would prefer another lumpectomy but it might be a mastectomy of that right breast. After that is 5 days per week for 5 weeks of radiation and finally I get started on 10 years of an anti-hormone medication.

    Thanks for your response ! I greatly appreciate your help!

  • ruthbru
    ruthbru Member Posts: 57,235
    edited August 2016

    Stage III is extremely serious and chemo is going to be recommended. At Stage 2, without chemo and hormonal therapy both......my chance of recurrence was 52%.

  • Optimist52
    Optimist52 Member Posts: 302
    edited August 2016

    PSW, all these decisions are awful for all of us. In my case my oncologist did NOT recommend chemotherapy as my Oncotype result was at the lower end of intermediate and I only had isolated tumour cells in two nodes. However I realise you're not eligible for Oncotype DX test. Although chemo is sometimes not so helpful for ILC, I would think in your case with 5 nodes affected and a large tumour it would be worth doing. Best wishes for all your treatments and keep posting on relevant threads because the knowledge and empathy of others here is fantastic.


Categories