How long did get your MBC from your original BC diagnosis??

[life2990]

stage 3: 2022

Stage 4: 2024

How did you handle it??? How are you doing on treatment??? Too scare to start treatment 😭😭

[Aprilfoolz1]

life2990, I'm sorry :/ I don't know what treatment you are starting but I've been on Ibrance and fulvestrant for a little over 4 years and I feel pretty good, still work and live an active life . When I was dx stage IV I was not feeling well due to the cancer filled nodes which paralyzed my vocal cords and made it hard for me to breath normally. Those symptoms went away within weeks of starting treatment .

I was dx stage 1 node negative idc in 2008. Completed surgery , rads , chemo and 7 years of femara . Dx stage 4 11 years later in 2019.

You are not alone. We are here to support each other and share tips on how to handle various cancer treatments .

[life2990 in reply to Aprilfoolz1]

thank you Aprilfoolz1

[TammyCross in reply to Aprilfoolz1]

Me too! 2008 - then total surprise of metastatic in 2019. Also had surgery, chemo and radiation, then five years of Arimidex. Declared cured. Hah!

[life2990 in reply to TammyCross]

I took Arimidex for only 1year.

[TammyCross in reply to life2990]

They wanted me to take it for 7 years, but I thought I was done. I guess it wouldn't have helped because the metastatic didn't appear for 11 years. I think it was promoted by the high dose of prednisone I was on for 2 years for an autoimmune disease, way too long. When I switched rheumatologists, the new one (very old, actually) said, "We are killing you," and was gradually switching me to methotrexate, but by then the autoimmune disease was gone.

My oncologist's nurse practitioner muttered that the prednisone could have facilitated the metastatic cancer. My oncologist said, no, the opposite. Then I found case studies in which a woman treated for an autoimmune disease, with the immune system suppressed so aggressively, developed mbc. The thought is the immune system wasn't able to kill the cancer cells that appeared. That is one reason I trust the nurse practitioner more than the oncologist sometimes.

[Aprilfoolz1 in reply to TammyCross]

Same ! Told my risk of recurrence was less than 7% and I should go off femara at 7 years as my risk of bone loss was much greater then risk of a cancer recurrence :/

[Photo-Bug]

Hi,In Dec 2015 I was Stage IV as my initial diagnosis. Talk about scared. Reading the internet didn't help. I figured I only had 2 years left. Eight years and about 10 drugs & chemo later I am still here. I survived the 1st 3 years plus on letrozole. Now I am on Orserdu due to my mutation. I started that in September 2023. It has been treating me well except for having a decline of energy.

So my recommendation is to get your mutation checked out so you can be prescribed the best drug for your mutation.

Praises for your journey.

Sharon

[life2990 in reply to Photo-Bug]

Thank you so much. I’m still waiting for my biopsy result

[Cherry38]

Hi life2990I was diagnosed stage de-nova in 2022 at 49.

I am on my 4th line of treatment including two clinical trials and I am still getting progression.

My first diagnoses was er+pr+ her 2-. After my 3rd treatment not working I had a bone biopsy and found out I am now Triple negative. I also have pik3ca and TP53 mutation.

At the moment I am on doxorubicin, I am just waiting for my recent scan results from my oncologist.

I haven't been on any treatment longer than 3 months, in between I have had an oophorectomy and palliative radiation treatment. My oncologist told me to get my affairs in order which has annoyed me as I am positive that something will work. Keytruda I would like to try but unfortunately I don't meet the criteria to get it free here in Australia.

I believe in positivity and I look at my cancer as a chronic disease and I will be on treatment for ever. I have two teenagers so I have so much more to do, so I will continue to fight on.

I am sorry you are going through this again, I just take one day at a time. Most of my treatments have been very tolerable which for me has been a blessing. Try not to google to much there are so many untruths about mestatic breast cancer, best advice is through your medical team.

Keep strong lovely 💗

[life2990 in reply to Cherry38]

you are very strong women. I love your positivity. I hope this chemo works for yo

[Cherry38 in reply to life2990]

Thank you sweetie. I hope you are going well and having a nice weekend. 💗

[life2990 in reply to Cherry38]

Thanks Cherry38

Enjoy your weekend

[Dragonfly2]

hello! I can see how scared and sad you are…and I’m sorry. I don’t know how young you are…but I do know that being younger is more difficult with this disease.

I was just 50 in 2003 when I had a teeny little tumor in my breast. It was treated with surgery, chemo and radiation. A year later I closed the door and thought I was done …17 years later it was MBC in my pelvic bone. I’m still here 4 years later. Being sick is painful and frustrating…bad enough to experience aging and loss of youthful energy…but now with the meds and various interventions, it’s just not fun. On the other hand, it’s NOT the end of the world. I try to treat it as a chronic condition with ongoing maintenance. There are other (worse?) diseases that can be just as deadly without intervention. Your ONC will come up with a way to treat this disease and you will just move on from there… but first you need to get past this initial shock of diagnosis and get used to the new normal.

There are many new meds and treatments coming out…, let’s pray that it’s sooner rather than after. Please don’t despair just yet…you still have many options. Best wishes ❤️‍🩹❤️‍🩹

[life2990 in reply to Dragonfly2]

Thank you so much Dragonfly2

I am very lucky to have you ladies to give me some hope when I’m down

[Andersl]

Hi, totally understand how you're feeling. I've 'been there'. This is my summarised story:

2019, February. Lumpectomy. Told Stage 2 and no node involvement. No baseline scans performed.

2019, March. Spinal MRI at another hospital to investigate pain in back showed cancer mets in spine.

2019, April. CT of thorax to investigate indigestion identified cancer mets in both lungs and mediastinum.

Freaked out when oncologist said based on scans I was stage iv!

Refused treatment for 6 months until I became very breathless then changed hospital. By this time it had spread to the lining of my brain.

Decided to have treatment.

2019 to date:

Chemo + brain sparing radiotherapy.

Recurrence: immunotherapy

Recurrence: immunotherapy drugs changed

Recurrence: change to drugs + Gamma radiotherapy to brain

Recurrence: change to drugs + Gamma.

Today: on 3 weekly Enhertu (9 months)

3 monthly body and brain scans. People look at me and say "you look so well". I suffer more from other conditions like the herniated disc in my spine than I do the cancer/cancer treatment.

...

My advice to you is dont delay the treatment unless you want the cancer to spread further and kill you. No apologies for being blunt.

Try to accept that if we have stage iv metastatic disease it will always come back. Though regular scans will quickly identify new mets and the appropriate treatment started.

Be kind to yourself. You wouldn't be normal if you didn't feel scared. Five years on and I still get a bit worried when waiting for scan results. I minimise it by ensuring I know what treatment I will have if they do show recurrence.

I could go on but I wanted this message to be clear and succinct. You're welcome to ask me anything though living in the UK treatment options are different to the US.

May your fears be allayed soon

Kindest regards

Lx

[life2990 in reply to Andersl]

thank you so much Lx for your kind words. I’m only 33, I gonna try to be positive as possible

[Andersl in reply to life2990]

Stay in touch x

[LibraryGeek]

Hi,

It’s totally normal to feel scared, especially in the beginning, but you will feel better once you have a treatment plan and know what you are doing. I was surprised how many totally manageable, tablet-based treatments are available and work brilliantly, allowing you to live a pretty normal life. It is cruel to get this beast of a disease when you are younger, but I have come across other ladies in your age group here and on other sites who are doing well. Its great to be positive but also it is fine to feel sad sometimes- we all do.

Hope your treatment works well for you. Keep us posted!

Jackie x

[life2990 in reply to LibraryGeek]

My age makes me scary

The progression in less than 2years terrified me

I hope the treatment give a best quality of life

[love2golfwell]

I'm so sorry you are beginning this journey but know that this is a great site for information, advice and support. I was diagnosed Stage 2 in February of 2013 and then Stage 4 in October of 2020. I had no symptoms or pain before I was diagnosed and bloodwork showed that something was going on. After some scans and a biopsy, the diagnosis was confirmed. I have been on Ibrance and letrozole since November of 2020 and have been doing well. I, too, was scared about starting this treatment as I had done some research and was worried about side effects, quality of life, etc. The meds have not caused a lot of side effects and I have been able to be active. There are many good treatments out there. My doctor said MBC is now treated as a chronic disease and we can have many good years. Stay strong, have faith and know we are in your corner. Sending hugs and prayers.

[life2990]

Me too I have no symptoms, I’m feel very well. Blood is not good and confirm Mets to bone via biopsy. Hope I have this chance to be active. Thanks for your reply

[bikebabe]

I had a tiny stage 1 ductal right breast dec 2019 then follow up scan 15 ‘ mths later showed left sided pleo lobular. Two operations and a course o chemo over 6 mths through whrn realised it wasn’t doing anything helpful and scan showed spinal mets. Moved onto ibrance and Letrozole and still going strong 2.5 yrs later.

[life2990 in reply to bikebabe]

Thank you for your reply. Hope I will do well on my treatment

[Totheriver]

I had stage 3 in 2002. Stage 4 2019 metastasized to my spine. Went on ibrance and letrozole. I am ok on it and kept things stable till Jan 2024. Through routine scans found out 2 tumours are growing so had 5 rounds of radiation. Will have scans in March. If the radiation worked I will stay on the same meds and if it didn’t I will have to change meds which makes me nervous. Hope things go well for you💕 Theresa

[mariootsi]

An mbc dx is overwhelming. I had 5 years between original dx and mbc. I was on Letrozole. Then in 2018 got mbc dx. I think once you get a plan from your onc and start treatment you will feel calmer. Also you should post here whenever possible as this is a group of amazing supportive women. We understand the Rollercoaster that is mbc.I also have a psychologist I speak with periodically to help me cope but I find the best way to deal with mbc is in speaking to women on this site who are experiencing mbc and can relate. So sorry about your dx but we are here.

[Lilywallytootsie]

Lots of hugs and prayers for you. My heart goes out to you. It troubles me for such a young person to have to deal with breast cancer. It is bad enough for us old folks. I am 78. There are a number of drugs that stop the growth available today. Best wishes and blessings. Hannah

[Widdershins3]

Hi, life2990--hang in there! What's said in this thread about MBC being treated as a chronic condition instead of as a death sentence is TRUE. And even though my initial stage 2 diagnosis in (I think) 2013 and my stage 4 diagnosis in 2021 were a shock and quite scary at times, here I am in 2024, still active and very much alive. That said, I have cancer in my lungs, liver, bones, spine and had it in my brain too.

I've noticed that my oncologist is quick with scans of all sorts, chemo that's changed promptly if it stops working (I'm now on Xeloda) and open to targeted radiation treatments if I have pain anywhere. I just finished 5 days of radiation to my left hip, since it suddenly became painful. Turned out there was cancer there in the joint and it's now been treated.

She's also ordered stereo-tactic radiation to my brain when a bunch of absolutely terrifying small tumors showed up there a couple of years back. They're now completely gone and haven't recurred. I'd thought I was done for when they were found, but nowadays there are treatments for them that avoid brain damage, unlike in the Bad Old Days.

You need to pay attention to your body and have an oncologist who's determined to keep you alive with frequent scans and timely treatments, but if you can make that happen, you'll likely be around much longer than you may have thought. It's different now, honest.

And I'll turn 77 in a couple of weeks and have the usual number of other health conditions to keep up with too. But my team at Kaiser is determined to keep me alive as long as possible. I'm so grateful for them and for the years they've given me beyond my initial diagnosis.

Get past the natural fears and into fighting mode as fast as you can--there are professionals out there now with the skills and know-how you need. Best of luck!

[monkeygirl62]

I am so sorry that you are going through this especially at such a young age. My first round with breast cancer was in February 1998. I was 36 years old. Surgery, radiation and a brief time of taking Tamoxifen. Thought I was cured for life. August 2023 was diagnosed with MBC. Due to moving and time it to to get an appointment with the oncologist delayed my treatment for nearly 4 months. Despite being scared putting off treatment isn't wise. Feel the fear and do it anyways - start your cancer treatment. I had a lot of anxiety too. I can relate to your fears and anxiety. You will have more fears and anxiety if you wait to make a decision. You will feel, as others have said on their posts, a lot more calmer once you see an oncologist is there a cancer center near you? I am on Ibrance and letrozole now and have little to no side effects. I started treatment with letrozole in November and Ibrance in December 2023. Also having a good support system like a therapist (in addition to us in the forum) will help. I was really depressed about my having the cancer come back and I am on antidepressants. Sending you warm hugs 🤗 and prayers 🙏 through this difficult journey.

[PeabodyTerrace]

I was diagnosed with invasive lobular cancer in 1995, had a recurrence in 2005, and was diagnosed with MBC (in the abdomen) in 2020

[hurricaneheather]

sorry to hear your are scared to start mBC treatment. i did not want to start it, either. then, i remembered there is a purpose for western medicine. thus, received it for the mind-body to heal while i continued with an integrative approach. may you make the decision that is right for you.

initial dx, Oct 2011. mBC to right pleura and lung with plural effusion, July 2015. VATs bronchoscopy and pluerodesis, July 2015. treatment: Ibrance, Anastrozole, Lupron (changed to Zoladex), Aug 2015. lowest doses of treatment. NEAD since @March 2016.