ILC with 1 node involved and NO CHEMO???

amctanase

Hi all,

I was just wondering if any of you ladies we not given chemo as treatment.

I am writing on behalf of my mother, who just had her mastectomy about 10 days ago and was diagnosed with invasive lobular carcinoma, grade 2 tumour, 1.8cm, with 1of 2 removed lymph nodes showing isolated tumour deposits <0.2mm. We met with the surgeon yesterday, and he said that in this situation the oncologist (whom we are seeing tomorrow) will likely NOT give my mother chemo as treatment or radiation, but only estrogen blockers.

We are meeting our oncologist tomorrow morning for the first time, but we are concerned that she may just take a 'wait and see' approach to her treatment rather than be proactive and aggressive with it. If that is the case, we do not even know if we should push for it or not...

We were wondering, have any of you been in a similar stage and NOT received any chemo as treatment? is it normal not to receive any? should we really push for it?

Any comments would be welcomed...we do trust in the decisions of the doctors, but at the same time we would want to know all our options...

many thanks ladies.

MsPharoah

Hi amctanase and hugs to you and your mother.

From your post, it appears that your mother's cancer is hormone positive and she may be clinically node negative.  Regardless of that, your oncologist should order an Oncotype DX test or a Mammaprint.  These two tests examine the biology of your mother's tumor and identify the risks for distant recurrence in the future.  These tests help the onc determine if chemo benefits outweigh the risks.  If your mother has other medical problems, those should be factored in as well.  However aggressive you may want to be with the cancer, you will not want your mother's overall health jeopardized if chemo offers little benefit.

Insist on the test!   And all the best to you.

MsP

lekker

I second the recommendation for the OncotypeDX or mammaprint test - unless your mother's oncologist has another reason why he/she wouldn't prescribe chemo no matter what.  Does your mother have other health issues?  Cardiac problems?  Mobility limitations?  Chronic pain?  How old is she?  All of these things - and many more - can come into play when deciding if chemo is appropriate for a given patient.  Remember, more treatment doesn't always equal better treatment.  Also, just because the surgeon says something, doesn't mean the MO will do as he says.  Wait and see what the MO has to say for him/herself and go from there.  Ask questions if you don't understand something, take good notes (or bring someone else along to do it) and ask what, if any, alternatives are available to the suggested course of treatment.  Good luck to your mom!

amctanase

Thank you for your replies.

My mother is 57 and other than slightly higher blood pressure which has been controlled for years with medication, she has not health problems at all.

I agree that we should we wait until we meet with the oncologist, we still don't know whast she will say. I just wanted to know what to say in case she says 'no treatment necessary'. From what I heard it is a bit more complicated here to get a second opinion once a doc has been assigned to you - you have to make a request, and wait and wait...so the more we know for the first appointment the better.

I had never heard of those two tests, so thank you. I hope that they are willing to do them here in Ontario (that they are covered under OHIP or that we have an option to pay if not).

Did any of you regret not having had treatment or had to push for it?

amctanase

I do feel compelled to add though that all my questions and skepticism is rather unfounded; looking back through the past 2 months my mother has received very thorough and good care, and our surgeon has been amazing as has his staff. We are just frightened...

clarrn

I am sure Ontario covers oncotype testing, although it takes awhile for results.  Hugs to you both,  we all understand that frightened feeling, once your plan is concrete it will get better.  I think here in Alberta, the chemo cut off is tumor size of  >2 cms or macrometastasis to the nodes (your moms would be considered micro or negative).

If you look up 'alberta guidelines for node negative breast cancer' in google it will give you the pdf file with what doctors here would say.  I can't say what ontario's is but I think it would be very similar.  Looks like doctors would not recommend chemo here either.  Good luck!  I hope that your mom can avoid chemo as some of the side effects can be permanent souvenirs as I discovered. 

clarrn

This is what I found from the Ontario cancer care site.

daisylover

Hi amctanase and mom,

I seem to have a similar diagnosis at 53 (with controlled high blood pressure as well). My oncologist at Dana Farber in Boston felt that neither chemotherapy nor radiation would be beneficial for me. (I did have a low Oncotype score at 9.) My second opinion from a Massachusetts General oncologist recommended that I have both chemotherapy and radiation (despite mastectomy). Go figure. I chose to be treated at Dana Farber. I take Tamoxifen daily, get monthly Lupron shots (to shut down my ovaries), get a Zometa infusion every six months (to strengthen my bones and hopefully prevent bone mets), and am taking a trial drug Palbociclib (a stage 2/3 trial). I was relieved not to have chemo. However, the Palbociclib has made me extremely fatigued. It seems like every treatment has its own side effects. I think that trusting the oncologist is key. It sounds like you do - so that's great. The Oncotype test would provide more information regarding how beneficial chemotherapy would be for your mom's tumor/cancer. As it was explained to me, you need to consider both the potential risks and benefits of treatment. For my cancer, the risks of chemotherapy (my mother died of heart failure) seemed high and the benefits low (My ILC tumors were growing slowly, and chemotherapy is more effective against quickly growing cancer.). Everyone's situation is truly unique. You are smart to research all the possibilities and arrive prepared to ask questions - make sure that you take thorough notes. It's a relief to just make the decision and get started on treatment. I wish you thorough answers and a good rapport with the oncologist.

amctanase

Hi all,

Off to a great start, been waiting for over an hour and she is still not ready....

amctanase

Hi all,

Just wanted to update on today's appointment.

We met the oncologist, Dr. Glenns, and liked her very much. I was skeptical because of some reviews about her that I read on rate mds, but she was great. She took the time to learn about my mom's entire journey (back to 3 years ago when she first fond a lump in that breast which was at the time diagnosed as fibroadenoma) all the way to the surgery. She answered all questions we have. In the end, she was the first to say my mom would benefit from the oncotype dx test, which she ordered (takes 3 weeks, apparently they send the tumour to California for testing. She also referred her to a radiation oncologist, although she said she was quite certain she will not need radiation, she should see one any way. She also ordered a chest ct - this is because for a while my mom told her she has been having a dry cough for a few months and feels some pressure on her chest (nervous about what that will show!). She did have an x-ray as part of the initial testing, but those are known not to be too sensitive.

SO, in conclusion we are meeting her again in 3 weeks. She DID say that my mom is 'borderline' as to whether she will need chemo or not, and that the oncotype test should tilt the balance in one direction or another. For sure she will be taking some hormone blockers.

All in all, we had a great experience with Dr. Glenns at NYGH and thus far would definitely recommend her. Seems very confident and knowledgeable. I also like that she tilts more toward the 'safe' side - "I am sure you do not need radiation, BUT i am not a radiation specialist, here is a ref to see one anyway" or " I am not concerned about your cough, but you should to a CT to rest assured"

thank you all for your advice, it means so much to be able to come here and talk to you all.

daisylover

I am happy that you met and liked your mom's oncologist. That is so important. The Oncotype score will be helpful too. My low Oncotype was a key factor in my oncologist's opinion/plan. The Radiation oncologist will give you another perspective as well. In the end, the treatment plan will be your mother's decision. I hope that you receive very clear answers and can make decisions without much stress. It is so wonderful that your mom has you to help her navigate this disease. When I was first diagnosed, I vacillated between wanting to research everything and not wanting to face anything. My husband has been a constant pillar beside me. I would have loved having my daughter beside me! 

It is encouraging that the oncologist gave a referral for a ct scan - It is always reassuring to have concerns checked out. Hope her discomfort is not related to the cancer. 

May the time pass quickly until you receive the results of both tests. Getting started on a treatment plan will definitely make the cancer diagnosis seem less overwhelming.

fizzdon52

Hi there, I have ILC as well and was not offered Chemo because I didn't have node involvement so from what I can gather, in NZ at least, with ILC they don't usually offer Chemo unless there is nodal involvement. Apparently ILC doesn't respond as well to Chemo as Ductal, although some people will argue this point. They weigh up the benefits of Chemo versus no Chemo etc. Sometimes with ILC the benefits don't out weight the risks. There is lots of research online if you want to research it. I did have Rads however. There are also quite a few other threads in the ILC section of this Forum that may be of help to you. I should add I give myself monthly Zoladex injections to stop my hormones and I am taking Femara/Zoladex.

amctanase

Hi ladies,

It has been a few weeks, I just wanted to update everyone.

My mother got her oncotype dx test results and her score was 10, which is considered low. Her chest ct came back without any abnormalities, so we are relieved. So finally, she had a 1.8cm ILC tumour, grade 2, clear margins, oncotype score 10, no mets. She had a mastectomy so far.

We spoke with the oncologist as to what the treatment plan is, and we are SO confused. She said my mom will have some hormone blockers but no chemo is necessary. My mom then asked, but what about chemo? Our oncologist's words were: " I do not strongly recommend chemo. But, in the end it is your choice. If you wish to pursue it, it will be for 9 weeks, one day every 3 weeks"

We have another meeting with her in a week to tell her our decision. I have no idea what we should do...my mom seems to be very borderline. She is scared she may regret not having chemo. But we are aware that is a very serious treatment, with an array of side effects ranging from spots on liver to leukemia (our oncologist did advise us about all this).

Any suggestions, anyone? what did you do..? would you do it if you were in my mom's situation?

Many thanks.

Ana

daisylover

Great news regarding your mom's lungs! Her low Oncotype is encouraging as well. I was relieved to hear "no chemo" from my oncologist. (ILC with 1 positive node, oncotype 9) My brother, a doctor, urged me to avoid chemo at all cost (family history of heart failure.) At this point, your mother's decision is very personal. She could get a second opinion. Even then, the decision will remain hers to make. Once her decision is made, there will definitely be much less stress. Just having you beside her must be very reassuring for your mother. Sending positive thoughts...