Hi - I'm new here. Diagnosed with Lo... - SHARE Metastatic ...

SHARE Metastatic Breast Cancer
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Hi - I'm new here. Diagnosed with Lobular MBC -- mets to abdomen


Found this group about a month ago and you've all been very helpful so far. I'm a year since diagnosis with MBC after 16 years cancer free (or so I thought). I have ER+ PR+ lobular carcinoma, which is the same as first time. That seems to be less common type of breast cancer. Mine presented with GI symptoms - bloating, weight loss, nausea/vomiting. Found the spread is only in the peritoneum and not in bones, brain, lungs or liver. I've been on Ibrance 125mg and letrozole for over a year -- starting cycle 15. Scans thus far had been pretty good. Still feeling quite well, working full time and just started a PhD program. I do have joint pains that my oncologist said may be related to the letrozole. I also have thinning hair from the Ibrance. Overall, I'm blessed with a wonderful husband and a tremendous health plan to cover these crazy expensive meds. My work and class mates are super supportive too. Just wanted to say Hi!

44 Replies

Hi there

Nice to meet you..shame has to be on this site!!

Mine came back after 24 years..found out in April and still shell shocked

Mines in bones and I’m on the same drugs as you..hate them but some ladies suffer really bad side effects and mine are copable with..I guess have to be glad they’re available

I wish you well with your treatment

I’m having my second scan tomorrow..not bothered about that it’s the results I panic about

Barb xx

Hidden in reply to Barbteeth

Good luck Barb.

Barbteeth in reply to Hidden

Aww thank you

Barb xx

girlsptz in reply to Barbteeth

Good luck with your scan. Sending positive vibes your way.


mariootsi in reply to Barbteeth

Good luck and I'm sending positive vibes and prayers your way for a good scan, Barb!!!!!!! Love Marianne

SeattleMom in reply to Barbteeth

Prayers for your scan, Barb!! Bless you! Linda

tab78FN in reply to Barbteeth

Thanks Barb. How did you scan go? They can certainly be times when we are reminded of our diagnosis.

Welcome Tab78FN. Sorry we have to meet on such a board. It sounds like your treatment plan is working well for you. May you have continued success. This is such a great board for support. You are a very busy woman. Make sure you take time to slow down and rest every now and then. Take care.


tab78FN in reply to girlsptz

Thanks Sandra. It happens that we are on a mini-vacation so your post is most timely!

You are giving me hope. I got diagnosed with mets to pelvis and soft tissue 2weeks ago and will get my biopsy results and a plan tomorrow morning still un done gormmif shock and fear. Thanks for posting

Prayers to you as you get your results and work on a treatment plan. I get hope from all these wonderful people on this site, so glad you are here too!

Hi! Welcome to the most supportive amazing group of women! Good to have you here and it sounds like you are doing well! Marianne

tab78FN in reply to mariootsi

Thanks Marianne! I agree, this is a great group!

Hi and welcome. Sorry you are a member of this club but it’s full of amazing women and lots of good resources and experiences. Best of luck to you.

tab78FN in reply to Kimr2081

Thanks Kim! I agree, wonderful support and inspiration here!

Hi, Tab!

Hooray for such a cheery and uplifting message! You are an inspiration staying so busy and active, particularly since the Ibrance can leave many very tired and achy at different points in the cycle.

Like you, I was 17 years "cancer free" until mets were discovered in my spine. I've been on the Ibrance/Letrozole combo (along with an injection of Xgeva, for bone stabilization every 3 months) since MBC diagnosis exactly a year ago.

Have a wonderful Thanksgiving--all of the MBC sister fighters are thankful for the continuing research and new meds to try if or when our little devils progress! Let's hope ours stay in check for a long time! God bless you!

Linda in Seattle XXOO

tab78FN in reply to SeattleMom

Hear, hear! Cheers to research! I feel blessed to be able to take oral meds and not suffer side effects that are much more than a nuisance. I also find that work and school give me something else to focus on, which I find hugely helpful. This disease just becomes another ache or pain that is part of life, and does not define who I am. That's how I've chosen to approach it. It works for me. ;-)

SeattleMom in reply to tab78FN

Hooray for your beautiful approach to this!! XXOO Linda

May I ask how old you are? Awesome that you are going for your PHD. Where do you live?

I have the same cancer type that you do. MIne represented in the lining of my left lung with pleural fluid retention from cancer irritation, etc. My fluid gone and lung seems back to normal. I will see when I get scanned in January where I am. I am experiencing some very mild nausea so that is a concern for me. Could be other things but you know how that goes in your mind, even if it is.

tab78FN in reply to blms

I'm a late bloomer when it comes to grad school - late 50s. I waited to start my PhD until after I'd retired from a career in the U.S. military. I sort of regret not pursuing it sooner however I think I'm better prepared and more mature than my classmates and that's already proving beneficial.

Prayers to you on your next scan!

Hi tab78FN

Interesting user name!

I too have MBC lobular breast cancer ER/PR+ diagnosed 28 years ago. I have also had ductal cancer 21 years ago and lung cancer 12 years ago. All primary.

I have been lucky to have been in the right place and time for new drugs and treatments with each cancer. I was also blessed with a strong constitution which saw me through all the chemo and radio treatment.

My metastasis spread is throughout the skeleton, eosophogus, peritoneal and a mass under my arm. Diagnosed initially following a biopsy in early 2018 with symptoms matching Hpylori

I consider myself very fortunate that Ibrance/letrizole has come along and I can tolerate it well. The bone pain I have is very similar to that experienced for years due to Aramidex but worth putting up with.

I keep my diagnosis to a very small contingent of friends and my 2 amazing daughters, who can handle it the way I want to. They have always been my inspiration. I lost my husband , their father at 60 to cancer so they have had a lot to contend with.

I read this site for support, information and inspiring ladies.

This being my 70th year has been filled with some wonderful celebrations and will finish on Wednesday the actual day with my really good mates. Shame I can only have one glass of bubbles but hey ho, they can have the headache!

I am through this site very aware I have so much to be thankful for and many on the site have heartbreaking stories and under extreme personal I thank God everyday.

Love and healing thoughts to you all.

Barb good luck with next scan, fingers firmly crossed.


tab78FN in reply to Sandig1948

My sister's name is Gigi so, here's to you! What a wonderful story of love and inspiration you have! Thanks for sharing.

Hi Gigi, hope all is well and happy belated birthday, hope you enjoyed that drink. Lol!! You are so uplifting and I thank you for your story and inspiration. You made me smile. When were you diagnosed with Mbc?

Hi tab78fn! Welcome! And I wish and pray that you all have a wonderful Thanksgiving! I am also ER/PR+, lobular, mets to bones. I was diagnosed May 2017 and had a single mastectomy, found it spread to my lymph nodes, and 4th rib bone. The area around my underarm, breast and side still has numbness which bothers me. Thankfully, I have had good results with my scans and the cancer has not spread anywhere else that is detectable. I have my 4th scan coming up at the beginning of December. Last year I had taken 6 months off from work last for recovery and learning to cope. I returned back to work (teaching 5th grade) last December. My treatment from the start has been Ibrance and Femera, and now for the past 4 months, monthly infusions of Zometa. Fortunately, I tolerate the medicine very well. My white blood count is low, and am mild neutropenia every month, but have not gotten sick, even with being around kids who come to school with colds, and fevers. My days are long and sometimes stressful. I love what I do, and am thankful that I am able to work. I thank God everyday for my health, family and friends.

tab78FN in reply to theresac1

Thanks Theresa. It sounds like your time around children may have built up your immune system ahead of time. Glad you are doing well and prayers for your next scan.

Greetings: Sister/warrior We have so much to be thankful for. May God continue to bless you, and all our sisters/warriors in the struggle to have victory over this disease. With breath still in our bodies we still have time to overcome, and have a cure for this disease. I pray we will all have a Happy Thanksgiving with our loved ones, and the subsequent days, and weeks to follow will be filled with joy, and Gods peace Amen XoXoXoXo

Thanks to you fellow sister/warrior! I agree that we are blessed beyond measure and this is another wonderful time to reflect on that. God's peace be with you as well!

Thank you all for kind words of welcome and support. This time of Thanksgiving in the U.S. certainly is a great time to reflect on my many blessings, you sisters among them! My husband and I are enjoying some away time in New Orleans this weekend, so its a lovely mini-vacation. We have a spa day planned for later and I'm so looking forward to the healing touch of a qualified massage therapist. Prayers to all of you as you look forward to the holiday season. Cheers!

Welcome. All in all, I think of all the things to be thankful for.

Best wishes.

Hi, I also have Mets in the stomach and bones and originally had lobular cancer in my right breast, 14 years ago. I am on letrozole and Ibrance since April, also a bone injection. I have just been dropped to 75mg as my blood is never right. My last scan showed that my tumours have not got any bigger but not decreased yet. Had another scan and get the results this Wednesday. Haven't had a lot of problems with medication, but like you hair is a lot thinner. I live in England by the way, but we seem to be given the same medication as in America now. Ibrance was only released last November here, so oncologist are still learning. I too am blessed with a wonderful husband who pampers me. As you said your results have been good so far, I assume yours have decreased. I am told that it is really unusual to get Mets in the stomach and it only happens with lobular cancer. I seem to be the only one in my chemo unit. Do find I have to eat small and often. Glad to hear your doing well. Take care

tab78FN in reply to LIMEHOUSE3

Glad you are hanging in there. I understand the tumor response may be somewhat slower to respond that IV chemo (but I could be wrong). If the tumor responds to hormone therapy, that’s good. My scans didn’t necessarily show some shrinkage until about 8 months however my GI symptoms got better much sooner. I had lost almost 40 pounds without trying (never a good sign) and now a year later I’ve gained it all back. So there’s hope.

I also was diagnosed with lobular in 2010 and just in July the Mets went from my bones into the lining of my bladder colon and peritoneum. My symptoms like yours but also urinary incontinence and started into kidney failure. After 5 rounds of ibrance and faslodex I feel back to normal and with the help of ureteral stent the kidneys and bladder are back to normal. I'm so thankful for the ibrance I get teary every month when I go to pick it up. You are the first person I have found to have it spread to the peritoneum. It's very rare I have learned. After thinking it must be a death sentence I realize it's very manageable.

Hi I was diagnosed lobular stage 4 spread to bones in 2013. In 2017 had two more tumors same left breast and spread to fluid in stomach and sternum. I am on taxol now since nov 16 th 2018. I still have to have my stomach drained every two weeks. Praying that the chemo will stop the ascites in the stomach. Do you take anything else for ascites? Also had acute kidney injury in Nov 2018. Do you know how long it takes for chemo to work on ascites to the stomach? Very scared now it’s been a year since ascites paid me a visit. Take care stay strong.

How did you know it was kidney failure? I have urinary incontinance. I thought it was the Ibrance?

My creatine went sky high,my GFR showed kidney failure and I got really sick. This was all before the Ibrance

Thank you for your quick reply. I wish you feel this good for many years to come. I too am grateful for ibrance. I was so scared and now that I have connected with all the women here I have learnt so much. Puts my mind at ease so I can focus on my kids and doing all that I love. Dreamboatannie, have you been stage 4 since 2010?

Sorry replied to tab78fn instead of you but you will see what I wrote

It’s ok it happens, I don’t see response still learning. How do I see it :)

Stage 4 since 2016

Hi Tab78

Thank you for your post.

8 weeks ago I was unfortunate or perhaps very fortunate, when my right hand went into spasm and I could not write.

Thankfully a quick doctors visit and emergency MRI showed 4 brain mets. 1 large 3 small.

I was told I could have stereotactic radiotherapy undertaken, on our free National health service and at an excellent hospital but not until end of December. I was filled with dread they would be growing larger and present a bigger problem and rapidly expand I have just had them removed in Germany where I am lucky to have friends who could talk on my behalf and financial wherewith.

They believe it was a total success but to be confirmed by another MRI in early March.

This is not to frighten you by the way but to reassure you that proactiveness in this game is imporotant and staying as vigilant as you can

to any change, I thoughtatvfirst it was a strain as I had been moving heavy boxes. So lucky to have been diagnosed so quickly.

The down side of this diagnosis is loss of my driving license and the fact flying is forbidden is a blow , as I love travel and my daughter lives abroad with her family in a beautiful place in Europe and I visited her very regularly .

Look forward to reading your posts and healing wishesfrom UK.

Thanks for sharing. A heads up about symptoms is greatly appreciated !!!

Also only be able to use one finger to type!

Hi. You must be one of those optimistic people I keep hearing about. 😺 glad so much is going well

So glad to hear that you are getting by so well. A good attitude is probably helping you. Good luck hope it continues for a long time.

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