Oncology Nurse with Breast Cancer

Cricket610

Hello! I am new to this forum, although was diagnosed with breast cancer May 2015. ILC, Stage 1, Grade II, lumpectomy, 2 re-excisions, radiation and Tamoxifen. I am an oncology nurse myself, now working in a radiation unit, but spent many years in medical oncology as well. In the midst of treatment, my knowledge helped me to not be overwhelmed, but working in the field definitely brings a unique perspective. Wondering if there are many other oncology nurses within these forums?

Moderators

Hi Cricket-

Welcome to BCO! We hope you find these forums useful and supportive!

You might find some other nurses over in our Employment forum, lots of info and members there!

The Mods

Cricket610

Thank you, Mods, I will check that forum out!

Sunnyone22

Hi Cricket - I'm not an Onco nurse but found your post because it appears our diagnoses are similar (ILC). Only difference is that I will use Aromatase Inhibitor instead of Tamoxifen (I'm 62 and post- menopausal - I'm guessing you're not.)

I used to be a science teacher and after my DX, I feel like all my research gave me college credit for Breast Cancer 101 !! SO much to read and learn about current treatments. Since we both had ILC, we find ourselves in that group of women whose cancer gets lumped into treatment protocols for IDC - a bit frustrating, in my opinion.

A few questions for you:

What %ER+ and PR+ were you?

Were your lymph nodes clear?

Did you get OncotypeDX and if so, what was your score?

Did you get second opinions about Mx vs. lumpectomy? How about for chemo vs no chemo?

And finally, you said "working in the field definitely gave me unique perspective". How did your experience influence your own BC decisions?

Thank you for checking in even though you're a year post DX. I'm very interested in your thoughts.

Sunnyone

Outfield

Not an oncology nurse, but am an internist. I was pretty good in the beginning at just sitting back and letting my team do its job, but when it all hit me after I finished treatment I found it really hard to find people to talk to who really understood. It can be hard to know more and seen more than the average person.

I also had trouble in support groups. In one, somebody "outed" me (in jest) and I left it. I found another where I kept my profession under the radar and was more comfortable.

I am rarely on BCO these days. If you ever want to be in touch, just message me and that will ping my email.

Cricket610

Hello Sunnyone and Outfield,

Thank you for your replies! Unfortunately, I don't have specific receptor percentages, the path just indicated > 10 % for both Estrogen and Progesterone. I didn't get a second opinion regarding surgery, but my surgeon did give me the option for both breast conservation and mastectomy. I had 3 re-excisions, would have gone for the mastectomy if the margins hadn't been clear. I definitely considered the larger surgery, but wasn't quite ready for it. My lymph nodes were clear and my Oncotype score was 7, so they did not offer me chemo, and I was thankful that I didn't need it.

I do have some concerns about the ILC diagnosis, knowing that it can be sneakier and present in unusual ways. My Oncotype is low, and I am on the Tamoxifen, but I know the chance of recurrence may be higher than predicted. I hope my surgeon will agree to order MRI's 6 months after my mammo, but know that she may not want to do that. Honestly, I have a strong faith in God and cling to Him in all that the future holds. It's weird, I have seen so much in our practice, I was definitely not surprised by my diagnosis. I think I actually find a lot of comfort in knowing more, even though I know what CAN happen, too. I kinda went into autopilot mode at the beginning, and some thought I was in denial, but I was just not rocked by it, and understanding the process, I was not overwhelmed, which was huge I think. But because I see so much, I think in my mind I downplayed my own disease at the beginning, and didn't let myself fully grieve it all, because I constantly saw those who had worse cases. I did slowly go through my own process of "grieving". But in the end, I was SO thankful that I just needed radiation (I received it where I work, which was weird and wonderful) , and although I HATE Tamoxifen, I am thankful I can take it, and have never missed a dose

I can understand the need for support without being connected to your profession, which I think is drawing me here. Support from those who have their own story, but understand in a way that others can't. I wish you both all the best!!

Sunnyone22

Outfield - I can understand why it might be difficult for an MD or onco nurse to find support when going through BC treatment. Being outed in a support group is unfortunate. Medical professionals deserve the same type of support when dealing with BC as those of us 'mere mortals'. I can't even imagine the detailed perspective you have after dealing with this day in and day out.

Cricket, thanks for answering my questions. Three re-excisions must have been hard for you but glad to hear margins were eventually clear.

Your comments about going on auto-pilot made perfect sense to me in light of the fact that you face BC and it's impact every day. Good that you finally 'grieved' your situation, though. We can only bury all this for so long.

Once I got my DX, I went straight into analytical mode, researching, collecting statistics, etc. And I too downplayed my own BC initially because it seemed early, small and minimally aggressive. I only told a few close friends and family members. Only after getting my 20 Oncotype did I fully let in the specter of recurrence. (Your 7 score gives me Oncotype envy!) Still, ILC doesn't seem to respond so well to chemo and with two oncologists advising against chemo, even with intermediate Oncotype, I decided to skip it and move on with life.

Information truly is power and the more I learned, the more comfortable I got with my own DX, treatment options, etc. I can understand why you found comfort in having a strong knowledge of BC despite knowing what CAN happen. The future is out of our control and putting our future in God's hands is, at least for me, comforting. When my husband died suddenly at age 51, I found out how little control any of us have over our futures. So when BC struck, I welcomed the information, the advice, the support and most of all, the incredible technology available today. At least I have the feeling of a tiny bit of control!!

I just finished 8 of 28 whole breast radiation treatments and will start Aromatase Inhibitor in a week. I'm grateful for every day............

One last question and I won't bug you anymore. What do you HATE about Tamoxifen?? (your comment made me curious).

Sunnyone

ILCRB

Hi,


I am internist too, recently diagnosed with ILC rt breast +estrogen, +progesterone . It has been a rollercoaster because changes of findings in tests


I did second ultrasound due abnormal area suggestive in first one and mri showed second mass which bx was ILC . Lumpectomy was done due masses were closer but margins came not clean and a third area was biopsied during surgery -I LC ( not seen in the mri). Mass was found 5 cm but nodes were negative. Now on process for mastectomy following radiation , oncotypes pending, therefore chemo is still possible. Any information about chemotherapy if anyone went to this .

Moderators

Hi ILCRB, we wanted to send you a warm welcome to the BCO Forums.

Until you get responses from other members here, we would recommend you to post/read through the Chemotherapy - Before, During, and After forum where you'll find many many discussions all related to chemo regimens, side effects, support from others going through chemotherapy, etc.

If you have any questions or comments for us, do let us know. We're always here to help.

Kind wishes,

The Moderators.

Gracejoy

I am a Scientist working in breast cancer research. Once I was diagnosied with ILC BC, I got to know a lot more about this disease. I would like to share with you what I got to know so far.

My OncotypeDX score was 16. Therefore I did not get chemotherapy. I had radiation. Now I am on Zoladex as I am premenapausal and on Tomoxifen for little less than two years. It has been shown recently in a large clinical studies that taking Tamoxifen and Zoladex at the same time in premenauposal women it is equivalent to chemotherapy benefit. As premenauposal women takes only Tamoxifen and try to block esterogen receptors our body sends signals to our ovaries thinking we don't have enough of estrogen. This ends up with a large amount of estrogen circulating in our blood. Therefore there will be a competition by BC estrogen receptor for Tamoxifen and estrogen. It will make Tamoxifen less effective when ovaries are producing estrogen. One can check the blood estrogen level by getting a simle blood test.

Working with Breast cancer cells in our lab, we have shown that Tamoxifen is able to kill Lobular breast cancer after treating the cells with tamoxifen by 20% after 2 days . Therefore Tamoxifen is a good medication to start with. However,Tamoxifen is not recommended by my BC surgeon more than two years because it can make cancer cells resistant to it. As we know cancer cells are smart therefore as we block estrogen receptor for too long then they try to survive by switching to other receptors such as TGF beta receptor which ends up with very aggressive tumour growth. Therefore it is recommended by my breast cancer surgent and oncologist to switch to AI after two years of Tamoxifen. Because based on 30 years of my surgeon experience, patients who take Tamoxifen for more than five years have the worst outcome later.

I hope this helps everyone with ILC.

JohnSmith

Gracejoy - Thanks for the comments.
It's not often that those from the Oncology community participate here, especially women that are personally dealing with the disease.

I've always wondered how effective Tamoxifen (Tam) is for ILC.
Sikora (2014) and Agthoven (2015), among others, have elucidated on the topic.
It's frustrating that a five decade old drug is still the primary option for premenopause (preM) ER+ patients when so many questions remain regarding which patients benefit and who will develop resistance.
Tam has been proven in clinical trials that were heavily weighted with IDC patients, yet subtype analysis between ILC and IDC is rarely done, so many ILC patients (like my preM wife) simply "roll the dice" and hope for the best.
In terms of last years SOFT clinical trial results, doing Ovarian Suppression (OS) with Zoladex and switching to an AI proved to be beneficial for the young (age <35) and high risk (lymph node positive). The SOFT subtype analysis comparing ILC vs. IDC by lead researcher Dr. Francis (University of Melbourne) and Dr. Regan (Harvard) still has not been done.
If OS + AI is proven beneficial for preM ILC, then making the switch becomes much more justified. Until then, there's little reason for patients to endure unnecessary toxicity that reduces Quality of Life (QoL), imo.

In terms of your comment about Tam resistance triggering a more aggressive phenotype via TGFβ receptors,
I read that TGFβ ligand inhibitors are in various early trials.
Which, if any, are exploring this Tam resistance issue in ILC?
It appears TGFβ inhibitors can generate an immune response which is useful in normalizing tumor microenvironment (TME) homeostasis. One has to speculate if they might synergistically work with Immunotherapies, which will likely lead to a cure for all cancer, someday...

Anyway, can you point to the research studies that discuss Tam resistance initiating the TGFβ receptors leading to a more aggressive phenotype?

Thanks!

Gracejoy

JohnSmith- thanks for sharing your knowledge with everyone.

I can tell from your comments you are in medical/ Science field yourself.

I don't know any specific studies where they show that use of Tamoxifen leading to TGF beta rec switch on. However we are collaborating with other labs where in their studies they show that aggressive breast cancer is associated with cells expressing TGF beta rec such as triple negative breast cancer cells. You can look up about the topic of TGF beta rec in the aggressive breast cancer cells in the pubmed for publications.

All the best to everyone.

JohnSmith

Hi Gracejoy,

I'm just an average guy without a science or medical background, but I'll take the comment as a compliment.

So, you're basing your "5+ years of Tam | survival" comment on anecdotal observations? That's not a bad thing... considering there are no documented ILC studies that scrutinized preM patients taking Tam, right?

I'm asking this because my wife (now 47) will reach two full years of Tam compliance later this year and she's nowhere near menopause.

Btw, where are you in the world? Please PM if you prefer to maintain anonymity.

Thanks, John

Gracejoy

HI JohnSmith,

I am in Canada. What I wrote about Tam were from my BC surgeon oncologist's 30 years of experience with his patients. He is the Director of the Department and also involved in breast cancer research therefore has lots of experience in the field. He does not let his patients take Tam more than two years.

This is a personal choice you need to make. I understand that she is only 47 years old. However your wife can have her ovaries removed and then switch to AIs or medically shut down ovaries for a while and see how soon she goes to menopause. Avg. age for menopause is 51 years old. It could be before or after this age.

Good luck to you. This is not an easy decision.

Optimist52

I feel fortunate now that I stopped Tamoxifen after two years due to side effects. This is very significant information for those on this drug, can it be more widely publicised?