Introducing myself - newly stage 4

Larkin

Yesterday was 9 years since I was first diagnosed with stage 3c ILC. Last week, I found out for sure that I am now stage 4 with mets to the lymph nodes in my upper posterior neck. PET looks clean on the rest of me but I'm not convinced as my original cancer didn't show either. Tumor markers were useless and stayed in the normal range they have been for years. No symptoms, just one hard lymph node I could feel (turns out there was a chain of cancerous ones, they took out 3.) From August 1st at my check up, it took a month of 1. ultrasound (inconclusive), 2. PET (inconclusive) 3. ultrasound biopsy (yep, inconclusive) and finally last Monday, surgical removal of nodes. Tomorrow, they present me to the tumor board and I see the surgeon and MO for treatment plans.

Tentatively, looks like switching from Femara that I've done all these years (I'm 48 now) to a shot instead (Armidex I think, as you can understand I'm in a zone these days!) Probably radiation to my neck and when that's done, Ibrance. We'll see. I'm nesting like crazy...eveything from Christmas shopping to buying 5 pounds of rice for the pantry to scheduling to do a living will, etc.

I am a stay at home mom/grandma. My oldest is 24 with a 2 year old (they live with us) I have a 20 year old at college and my baby is turning 14 in October and is in 8th grade. I've been through every feeling this past month from despair to gratitude to worrying about the world falling apart without me to control it Today I"m making lists of everything that needs to get done. We have only told a few people so far...I"m dreading calling my friends. Dreading it.

Anyway, I'll know more tomorrow and I'm looking forward to getting to know all of you and gleaning from your experiences.

May66

Larkin

Am so sorry to hear about your diagnosis . Am a newbie on here, similar dx. I do understand all you are going through ( emotionally , socially )

It's tough to not be in control . But I can tell you that they have many treatment options . I have been around almost 2 years ( ups and downs) but still here . Do what you enjoy . Be with family . It's hard to tell people . I have told a handful .

I with I had the magic words . There are wonderful people in this forum .

You will soon feel the support and care.

Hugs to you xoxo

May

50sgirl

Larkin, I am sorry that you have reason to join us, but welcome. You will meet some wonderful women here who will be supportive and helpful. There is always someone here to answer questions and concerns that you have. We all know how you feel because we have all been in your shoes. What you are feeling is normal. We have all felt the shock, the panic, the fear, the sense of losing control, the sense of helplessness and so much more that you feel right now. We all thought that we would be gone from this earth before the next holiday or before the next birthday. Some of us stopped buying new clothes or even hesitated to buy the large size package of food or detergents because, After all, we thought wouldn't be around for long. Well, you will soon learn that many people live a long time with mets. Don't believe what you read when you google. We are proof that the stats are outdated.

Well, I am here to tell you that things will get better. Yes, honestly. I know that things are crazy for you right now. Once you meet with your team and begin your new treatment, things will calm down. If you will be getting injections, it will probably be Faslodex rather than Arimidex. I recently switched to Faslodex and am adding Ibrance. I am tolerating Faslodex quite well. There are many treatment options available

Let us know how you are doing. We are all here for you.

Lynne

Kandy

Sorry to have to welcome you to this elite group. It is the hardest at first, like being on an emotional roller coaster coaster. I'm sure you will feel better after you have a treatment plan in place. Don't count yourself out so quick, there are many on these boards that have been around for years. Lots of options for you. Wishing you the best.

Bestbird

I am so glad you have found this forum although I'm terribly sorry for the circumstances that brought you here.

The initial weeks and months after a mets diagnosis are the hardest. Dealing with the shock and fear can be very difficult. But as others have said, over time it gets a bit easier, and you'll find many people who are doing well with a good quality of life!

When you receive the report from the biopsy, it will be important to know what the estrogen (ER), Progesterone (PR) and HER2 status are, since they may differ from the original cancer. Additionally, you may want to request testing to see whether the tumor has Androgen Receptors (AR), since there are some promising clinical trials that target Androgen Receptors in a similar manner as current hormonal therapy targets Estrogen Receptors (ER).

This is very important: Please remember to keep copies of all tests results and scans in case there eventually is a need or desire to have a second opinion from a specialist outside your medical network.

You may also want to seek a second opinion at any point about treatment.

I've compiled a 120 page booklet about Metastatic Breast Cancer treatments, side effect mitigation, and cutting edge research regarding the disease.You are welcome to request a complimentary copy by visiting the top of this page: https://community.breastcancer.org/forum/8/topics/831507?page=2#idx_32

Two published books which you may want to read are:

"Anti Cancer: A New Way of Life" by Dr. David Servain-Schreiber.The author, an MD, was diagnosed with a malignant brain tumor which he survived for nearly 20 years by following the science-based principles described in his book.It contains excellent information about diet and supplements, as well as emotional well-being.

"Life Over Cancer" by Dr. Keith Block, an expert in integrative oncology who combines cutting-edge conventional treatment with individualized and scientifically-based complementary therapies.This book is an excellent resource for those who are interested in combining conventional and complementary therapies.

Please post if you have questions, and wishing you a great outcome!

Tina2

Larkin,

Welcome to "the club no one wants to join." Your head is spinning now, but be assured that are many treatments available and lots of hope for living well. You'll find great support and information on this forum. And you'll meet many people who have been living with Stage IV breast cancer for years, including yours truly.

Tina

Larkin

thanks to all of you for all your understanding and good advice. I'll update tomorrow. And yes, it did change from er/pr positive to er +/pr-. I guess that doesn't change treatment though. It was HER neg but still waiting to confirm, if that is the same

pwilmarth

Sorry to hear that you have joined us but we welcome you with open arms

zarovka

Larkin - hang in there. there are lots of options, it can be very complicated and stressful to find the one that will work. also the treatments are not always easy. they can knock your life off track a bit. the process is hard. but we are planning to be at this for a long time. you'll have lots of questions and emotions and information to process. this is the place.

the one thing i will say is don't tell anyone until you really want to. and when you feel you want to, think twice before you do. i have found that it is more of a burden then a help to tell people i have cancer, except for my husband and kids and the folks on this forum. it's so complicated that most people can't get it. as a result, when you tell them you have stage IV cancer, you haven't really told them anything. i end up feeling more alone rather than supported. it's not the other persons fault, it's just that they are not in this very strange thing.

i get the most support from people actually going through this.

>Z<

Lynnwood1960

Larkin, as others have said, so sorry you have to be here, but welcome! You will learn more here then any doctor could ever tell you. It's such a shock in the beginning but things will settle down and become more normal once you begin your treatment plan. I highly recommend Bestbirds booklet, LOTS of great information at your fingertips!

Larkin

UPDATE...so my treatment will be Falslodex shots and radiation to my neck followed by Ibrance. I stopped my Fermara yesterday and first shot is tomorrow as well as first radiation measuring appointment. If that doesn't work, my first chemo will be Xeloda. Has anyone else had radiation to the neck

zarovka

Welcome to Tribe Ibrance!

Here are the two threads where we figure out how to manage the side effects of Ibrance while thanking the lord above for it.

Palbociclib 2015

Faslodex and IBrance

Many women can maintain their general wellbeing on this protocol in terms of exercise, diet and living a life full of the things they love. I think that one reason it is effective.

>Z<

50sgirl

Larkin, There is also a Faslodex Girls thread. It includes recommendations for helping to make the shots as painless as possible. I am including them here so you have them before tomorrow's appointment. Don't be shy about asking the nurse to warm up the syringes and inject slowly. She/he probably knows this info anyway, but a little reminder always helps.

Musts for pain-free shots:

• Warm up the syringes. At least room temperature. Armpits work well, as does belly skin.
• Take the weight off the leg on the side of the shot. Relax that cheek/leg as much as possible.
• Inject SLOWLY! It should take at least 30 seconds to empty each syringe.

General consensus as helpful:

• Hydrate before and after the shots
• Take a walk or massage the area afterwards in order to get the castor oil and fulvestrant moving.
• If you get an allergic-type reaction (itchy, swelling), take Benadryl before the injection (or if skin rash use hydrocortisone cream afterwards)

They aren't bad if you follow the advice.

Lynne

dlb823

Just adding my welcome to you! I'm sorry about your re-dx, but glad you've found us. I'm also on Faslodex, so no doubt will see you on those threads. I've been on it for a little more than a year now, and actually think it's easier than an aromatese inhibitor, especially easier than Femara. Hopefully, that will be your experience too! Not sure about RT to the neck. Have they explained why that's necessary before seeing what Faslodex does to those nodes? Not sure where you're being treated, but it never hurts to get a second opinion before doing anything like RT, which I'm thinking could make swallowing pretty painful for awhile.

And I wholeheartedly agree with going very slowly and carefully about whom you tell. Looking back, it seems like what is truly life-alterning news to us either totally escapes others (because they don't understand it), or we are suddenly treated like we're in much worse shape than we actually are, neither of which is helpful. Take your time about deciding who to confide in. Be sure you have a good grasp of your situation so that you can explain it to them more accurately. (((Hugs))) Deanna

Charlene1

Hi Larkin,

I had radiation to my throat, neck and clavicle last year I had 35 treatments. I had some taste issues and still have some but it has improved drastically from what it was, Ask your radiologist what type of cream or lotion he recommends for check the Rads forum here for some good advice on what works best. I was very sick at the time I had mine so some of my side effects were due to where the cancer was in my throat.

You will be fitted for a mask that will cover your head, neck and shoulders, they wet it and fit it to your head, neck and upper shoulders then it dries hard - they then mark the mask as to where the beams are to hit, so no tattoo this time. The mask is skin tight so it is very important to maintain your weight also I use to take an ativan about 1/2 hour before treatment so I didn;t panic when they put the mask on. All in all it was not as bad as I thought it would be and it killed all the cancer that was in my throat and lymph nodes.

Hope this helps

Charlene

Charlene1

Larkin

Here is a pic of me with the mask on getting ready for the treatment

Larkin

Thanks gals for all the tips and tricks and your shared experiences. How did I miss that Faslodex is actually two shots! Well that stinks lol! The shots and radiation planning went well today, they did my mask and I did get one small tattoo.

Deanna, I'm so happy to hear your experience with Faslodex vs Fermara...hope that's true for me too! Nine years of Fermara was not fun! I'm really sitting on thinking about who I want to tell and who I don't what to tell...that's a whole thread! We want to radiate the neck since the mets aren't yet showing anywhere else and we all feel like it's an opportunity we don't want to miss since we know active cells are right there. My cancer has morphed to weak er positive at 50% and has turned pr negative so we aren't sure the hormore treatments will work but we're going to try. I am getting a second opinion but do feel good with the plan we came up with today.

Charlene, thanks for your radiation tips. I had radiation to my chest but looks like throat is a different thing. I will be getting 33 treatments with IMRT. It's at the back of my head so we are hoping my mouth will be mostly ok. I'll be starting September 14th

Pooky60

Hi all! I was dx w/ stage 2 bc 08/2011. I had chemo,surgery, radiation, herceptin, and tamoxifen. I was cancer free till July 1 of this year. It spread to my bones. It's in my left femur. I swing from incredible sadness to feeling pretty good about it. Everyone's got struggles and hardships and we're all going to die sometime. Yet I must outlive my parents bc I can not be the cause of inflicting so much pain on them. They are the most wonderful people in the whole wide world. I also have a sweet 11yr old grandson that DH and I are raising because his mommy died when he was 7. How can I now go and die on him? No way! I will not go gentle into that good night. Heck no! I'm gonna fight and claw my way into wellness. I might be deluding myself and spouting nonsense but I felt compelled to express all that. I'm grateful for this forum and for the advise and words of wisdom from all of you. I'm currently taking a shot of Xgeva once a month, Letrazole everyday, and Ibrance (21 days on 7 days off). I pray that we all live long healthy happy lives.

artistatheart

Ha! Pooky I love that post and I raise a glass to you. Long may you run!