Newly diagnosed MBC

[monkeygirl62]

I am a cancer survivor of 25 years but a recent ER trip, (I was sent there by my PCP because my blood pressure was really high). Five hours later, a CT scan among other scans and blood work, I was diagnosed with metastatic breast cancer. Left breast same side as previous breast cancer. This time it was under my left armpit. I thought I had lymphedema, similar symptoms so I was shocked that I have MBC with lung involvement. So I am here and with this diagnosis seemingly endless tears.

[Breege_M]

Hi I have some similarities to yourself. End Nov 2021,

8.5 years from original stage 2 diagnosis, I notice my left arm was swollen. Saw the Oncologist who diagnosed lymphoedema and sent me for an ultrasound which was clear. Saw Dr again Jan 2022, markers raising, sent for scans etc. stage 4 in bones and nodes in lungs. Started treatment mid Feb 2022.

My advice is don’t panic. Browse this great site. Lots of advice, information on various treatments and very heartening some members who have been on treatment for years.

Best of luck to you.

Ps my lymphoedema didn’t clear. I had massage and wear a sleeve. On Physio adv, if going away on holidays, bring an antibiotic .

[monkeygirl62 in reply to Breege_M]

Thank you for your encouragement! I am so sorry you have to deal with lymphedema on top of it all. I had bought a compression sleeve and bra, that has turned out not to be my problem. I had a mass under my left armpit and when a mass showed up in my left collar bone and antibiotics weren't working to reduce it,that's when I realized this may be cancer. Are you dealing with pain from both? I have neuropathy because of the mass under my arm pit and it has rendered my left arm and hand basically unusable. Treatment hasn't started yet, still having tests done then my next oncology appointment is mid November.

[Beryl71 in reply to Breege_M]

My lymphoedema started 18 months after my primary tumour. I wore a sleeve for 26 years but with regular massage. A few years ago I found a therapist who specialises in taping. Now I no longer wear a sleeve and just have regular massage.

[monkeygirl62 in reply to Beryl71]

That's great. My best friend Denise, who I met 25 years ago in cancer treatment (she died in 2015 of cardiac arrest at age 59) had lymphedema and I went to her appointments for PT and learned how to tape and wrap so that I could help her. Especially at night when she was getting ready for bed. I would go to her house to tape or wrap her up.

[Beryl71 in reply to monkeygirl62]

My taping was to direct drainage to the better functioning areas, so not complete wrapping. It was like Elastoplast and I wore it continually . Gradually after a couple of months it was reduced and removed, rendering it unnecessary to wear a sleeve as my body had learnt to drain itself. A very clever technique and so good to wear a sleeveless dress again . Before that I had sleeves from Lymphadivas which were pretty and patterned, rather than those ugly brown things! Life is a lot better now for lymphoedema sufferers if you find good therapists and nurses!

[kiwi67]

So sorry you find yourself here. But this group is full of information and support. Its ok and natural to have endless tears at this time but as you move down the track and get more info regarding treatment things will settle a bit, but if you are like me there will be shit moments and you will have to accept them, deal with them and move on. I have been dealing with this just over 6 months and it is the hardest thing I have ever had to deal with, both physically and mentally. What I have done is research a lot so I know what the doc's are talking about and I have a notebook in which I write down my questions for the oncologist and I leave a gap under each question for her answer. I found by the time I got home I was forgetting what had been said and I was a nurse with 48 years experience, you would think I would be able to remember the medical jargon, but noooooooooooooo my brain turned to jelly. All the best and hope to hear from you as you move on.

[Aprilfoolz1]

monkey girl, I'm sorry you are here. We all understand the endless tears you are experiencing and we are here for you. In my experience , my recurrence happened 11 years after I was dx stage I and completed all treatment including 6.5 years of femara (back then 5 years was standard of care). once i started treatment and could see it was working and I wasn't experiencing significant side effects, i felt calmer (although it is still hard to believe we are all here and stage 4). 11/2019 dx stage IV - started in my left superclavical node which caused vocal cord paralysis . I had addl spread to distant nodes in my chest . I started Ibrance and fulvestrant and it's been almost 4 years on these drugs . My scans have shown no evidence of active disease for a little over 3 years (took 9 months for everything to clear ). Stable is the goal which means the meds are keeping the cancer from growing larger or spreading . I hope our messages help you know you are not alone . I had laryngitis for 8 months due to the vocal cord paralysis but that went away when my superclavical node returned to "normal " size so I hope your neuropathy subsides when treatment starts to work and shrinks the mass. Let us know how your tests go and what treatment you will start.

[Beryl71]

My situation was same , in lockdown , and I felt just like you. I am sorry. But three and a half years later I'm on a treatment programme, I feel much better and I'm living life to the full. Don't let it take over. It's an unwanted companion. Keep it in its place. Ask questions of the medics, take control and good luck!x

[bikebabe]

sending you some virtual hugs. It’s such a big shock to hear after you’ve been doing so well for so long. New metastatic meds are gamechangers for most and you’ll soon settle into that new rhythm but take all the love and hugs offered that will help you through this dark time.it’s like being in the dark woods and suddenly coming across a sunny clearing then back in the woods - on repeat. Enjoy those sunny clearings - which can last many years.

[monkeygirl62 in reply to bikebabe]

I will enjoy the sunny days despite right now feeling like Hansel and Gretel and who in the world ate all my bread crumbs.

[Gingerann1]

Hi! I had that same kind of ER experience after 7 years in remission in Nov. 2020. Was experiencing shortness of breath and a cough and chest x-ray showed buildup of fluid on lower left lung. Diagnosed with a pleural effusion and after testing of the fluid, it was confirmed to be MBC. Took all the wind out of my sails. Started 1st line treatment of Ibrance and Fulvestrant shots and after 15 months there was no evidence of disease (NED) and that was 20 months ago….

I had read some outdated info on overall survivor rates when first diagnosed and was convinced I would only have 6 months to 3 years to live until I realized that info was from 2008. Treatments have come so far and there are so many treatment options and combinations to keep progression at bay and I am very hopeful a cure for all of us is truly on the horizon. It is already happening with blood cancers.

My advice is to take a deep breath, stay in touch with this very caring group through good times and bad and find the best Onc team that meets your needs. Sometimes it takes a second opinion to feel comfortable that it is a good fit. It did for me.

Big virtual hug as you continue your journey.

[monkeygirl62 in reply to Gingerann1]

Thank you Gingeran1! I am appreciate your advice and virtual hug. I will stay in touch. I am overwhelmed by all the responses. It helps not to feel so alone.

[NPmary]

So sorry. We all have stories about our diagnosis but I think finding out in an ER setting is especially difficult in so many ways. Hope you find an oncologist who is a good match for you. We are here for you. 🌺❤️🌺

[monkeygirl62 in reply to NPmary]

Thank you NPrimary! I was fortunate to have a very kind ER doctor who is so sweet and he was straight forward with a lot of compassion. He was very through with a lot of tests and I could see tears in his eyes as he told me. I was alone at the time of the ER visit. I had no family in South Carolina where I was living since my son and daughter and their family live in Seattle. They flew out, packed up my household and moved me back to Seattle within two weeks. I am trying to look at all of this as a new chapter in life.

[NPmary in reply to monkeygirl62]

Definitely a new chapter. Great that you are with your family. Good for you. You will learn much, become an advocate for yourself, you will be ok. Sometimes this whole thing sucks. Everything changes, if you get a new symptom or scary thing - don't think it's forever, Everything changes. Mostimes it's just another regular day, taking your regular medicine,having a usual pain or two. Loving the person in front of you, knowing the present moment is the most important, loving this world.

Guess what - an absolute fantastic oncologist I had in Cleveland moved to Seattle. Google her and she if she can be your doc, she is smart, kind, compassionate, a researcher, really the best. Her name is Dr Shaveta Vinayak (you can tell her Mary from Cleveland referred you). If you already have a doc and you want a second opinion to see if someone else is a better fit for you - no doc who is good will ever get upset about you seeking another opinion or even switching docs (any doc who does you should run from anyway).

Wishing you love, peace, comfort and many birthdays.

🌺❤️🎁❤️🌺

[monkeygirl62 in reply to NPmary]

Ok sounds great if I need a second opinion or a better fit for me. I do know what everyone means about having an oncologist that is a better fit. I was living in a rural area in south Carolina so there were only two oncologists in the hospital and both are males. No choice for a female oncologist for breast cancer.

[Aprilfoolz1 in reply to NPmary]

Dr Vinayak is wonderful ! She was my first mbc oncologist - she took family medical leave in 2021 and is back but only works at Fred Hutchinson Cancer Ctr as a research oncologist now .

[monkeygirl62 in reply to Aprilfoolz1]

Oh I wonder if my friend Lisa knows her. I will ask Lisa because she has friends that work at Fred Hutchinson. I am seeing an oncologist that is breast cancer only. Not general medical oncologist, it's where the intake person at Fred Hutchinson put me after reviewing my medical records.

[NPmary in reply to Aprilfoolz1]

Thank you for the update. I knew she wanted to do research but thought she would continue to see patients. She is a wonderful doc.

[1711JPD]

inam so sorry you are here, but this is a good place for information and support. I dont post very often. I well remember the shock I was in when I received the metastatic dx in January 2021. I cried a lot, and still so at tines.

I have tried to keep cancer in its place and not obsess over every little thing (which is much easier said than done). Get your support team in place, ask for help when you need it , check your onc’s/cancer center’s resources. I know I felt better once the plan was in place.

Breathe. Know that you have people rooting for you!

Best wishes now and always.

Joyce

[monkeygirl62 in reply to 1711JPD]

1712JPD, it's reassuring for me to know you still cry sometimes. I too obsess over details and it's hard not to, I know I will feel more assured about things when I finally have a treatment plan. I do have a lot of support, I just have to ask for what I need. I've only been here 3 weeks, I have always been so independent. I just realized I am learning a lesson about pride.

[1711JPD in reply to monkeygirl62]

Any time you need an ear, please know I will turn on my hearing aids for you! 😉😉😉

[Trissh]

I agree with the previous comments, you will find encouragement and helpful information here. Also, a little xanax in the first month or two really helped me with the anxiety. I also asked for low dose Lexapro which I still take two years later. But early on when I was planning my funeral in my head, a very wise doc on the Palliative team, who I trusted, told me I was going to be around for a long time with all the new meds coming. I decided to go with that and since the pipeline has only improved since then, I would impart the same sentiment to you. --Trish

[monkeygirl62 in reply to Trissh]

Thank you for your sentiment!! I must admit I am at times anxious about the future. I took Xanax before when my husband died 4 years ago of cardiac arrest. What is Lexapro? A new anxiety med? I am grateful for all the new research and better treatments since I had breast cancer 25 years ago.

[Trissh in reply to monkeygirl62]

Lexapro is anti-anxiety and anti-depressant but it takes a few weeks to work thus the Xanax for immediate relief! So sorry to hear about losing your husband so suddenly. I too started with this disease a long time ago, in 2002 with my first surgery and radiation for BC Stage 0. Then it came back in 2017, Stage 1. Bilateral Mastectomy and DEIP reconstruction. And found out about Stage 4 two years ago when I went to my orthopedic guy for pain in my leg. And yes, the meds do really take the edge off with respect to anxiety. I use Xanax when I am coming up on a scan too until I get the results and they are ok; or until there is a plan in place. I hope you get all your plans in place soon! --Trish

[CTGirl1962]

25 years! I’m so sorry you had to get this news. Truly! But…don’t you worry!! You’re going to be around a long, long, time!! This “chronic illness” is very manageable. Mind over matter. We are all here for you. I pray daily for all of us. 🙏🏻🙏🏻🙏🏻

Sending love and support.

[monkeygirl62 in reply to CTGirl1962]

Thank you CTGirl1962!! I so very much need to those words that I will be around a long time, I have been hoping to till at least 83 years old. My mom is 84 years old, she's on hospice since she has congestive heart failure now but she's really still going strong. My sister is her caregiver and she's doing a great job!

[love2golfwell]

I'm so sorry to read about your diagnosis, especially after you were a survivor for so many years. I understand the tears, I had them too when I was first diagnosed 3 years ago with MBC. I'm glad you found this site. It is a great resource for information, advice and support. Unlike many years ago, there are new treatments for MBC that can work. I have been on Ibrance and Letrozole for 3 years and am currently stable and have a good quality of life, living one day at a time. I pray that you will find a treatment that will clear the new areas of concern and give you hope. Please know that we send you hugs and prayers. Best wishes to you.

[monkeygirl62 in reply to love2golfwell]

I honestly believed with all my heart it would never return boy was I do naive. Thank you for your hugs 🤗 and prayers 🙏!! I do appreciate it very much. Prayers are the gift that reaches to heaven and then return to all of us with blessings and maybe a miracle or two.

[love2golfwell in reply to monkeygirl62]

I never thought the cancer would not return either as my Oncotype DX score was a 10 which meant a very low percentage of recurrence. My oncologist was stunned, too, and cried along with me at my diagnosis. Friends and family have sent up lots of prayers for me and I feel that they have helped me to still be here 3 years later and doing well. Hoping for many more years with the right treatments along with the healthy lifestyle changes I have made. Try to stay positive, learn as much as you can, get outside support and help if you need it and take care of yourself. Sending hugs and prayers.

[Hopeful4Cure]

We have all been in your shoes. All the others that have already responded have responded just as I would. We are here for you. Stay strong and positive. Blessings

[monkeygirl62 in reply to Hopeful4Cure]

Thank you Hopeful4Cure! I hope there's a vaccine soon for all cancers.

[fancydog]

Its very scary in the beginning of the Metastatic Dx, you will find wise counsel and support here on this site, we are living with MBC not dying!🙏❤️

[monkeygirl62 in reply to fancydog]

Thank you fancydog!! I am hoping to also meet in person someone living with metastatic Cancer. It'll give me even more hope.

[Onedayatatime60]

I hope you are ok. The initial diagnosis is always a shock and takes time to get your head around. I immediately went down the Dr Google road which was not helpful. Often stats you read are outdated and not relevant to your particular case. This site gives me so much hope, when I see people who have been in treatment for many years I realize there are options and yes hope. I know I will have cancer forever and stable scans are my goals, but I also feel I am not living with cancer, I am living my life, I am very happy and cancer is just hitching a ride (a passenger I do not want, but I have no choice)

It will be 4 years for me in Feb. After chemo finished in 2020, I am on immunotherapy and will remain so until another line of treatment is needed. But I feel good on most days and deal with side effects of treatment as they come. Once travel was back post pandemic, I have been on four awesome vacations in the Caribbean . You would not know if you looked at me that I have stage 4 cancer

Take care. Take it one step at a time. Reach out here if you need support or have side effects others may have had and who may have helpful things they did.

[monkeygirl62 in reply to Onedayatatime60]

Thank you for your story! Especially about travel! I love traveling and I don't want cancer to stop me from doing what I love best visiting other countries and cultures. I do want to feel better and not be in cancer pain and on opiates but until treatment starts it's the best I can do for myself. I am taking supplements to help me.

[Kakoburr]

I add to the hope and confidence, Monkeygirl62: Decades after treatment for stage 1 and over 10 years into the all clear zone, I was diagnosed with stage IV. Like many, the find was fortuitous, seen on images while searching for something else. There are so many solid treatments now, and I for one have been doing pretty well for seven years since this "upgrade." On the same therapy, with other options if I need to change. While we don't have a cure yet, we have treatments that allow a happy life.

[monkeygirl62 in reply to Kakoburr]

Thank you for your upbeat report!!

[WhippetX2]

I'm sorry you had to join this club, but this site is awesome. Truly, I don't know know if I would have made it this far (diagnosed 2.5 years ago) without them. Their knowledge, compassion and positivity is incredible. I'm sure you feel as though you are in the middle of a tornado (think Dorothy in Wizard of Oz) but I promise you this will settle and you will find that your life will go on. Keep in touch with us .

[monkeygirl62 in reply to WhippetX2]

Yes you're right about feeling like I am in the land of OZ looking for a miracle. I will most definitely keep in touch.

[Cowgirl1951]

Monkey girl, I am wrapping my arms around you. Sending you a big warm hug. My breast cancer metastasis after 12 years. I am still here after 10 more years. I hope this gives you encouragement. Exemestane and zometa gave me 7 years until I went on Ibrance (could not tolerate fatigue) and now Kisqali. Best wishes on this journey! Kay

[monkeygirl62 in reply to Cowgirl1951]

Thank you Kay for the hug 🤗. I wish hugs would cure cancer. I love hearing long term survival from real live survivors and not just data from clinical trials. Bless you 💗.

[mkrienke55]

I can empathize with you as I was diagnosed with metastatic breast cancer in May after 22 years I was shocked and am still trying to get my life organized around all the appointments and uncertainty. I started Anastrozole and Ibrance in June and a recent CT scan showed progression of disease. I had a PET scan today and am awaiting a blood Test for DNA analysis of my cancer. Not sure what is next but I am trying to stay positive and take life one day at a time. I feel good so am hoping there is a drug that helps me as thus far it is only confirmed in my bones. I have learned a lot on this site and am encouraged by the stories of long term survivors.

[monkeygirl62 in reply to mkrienke55]

Mkrienke55, I am sorry to hear about progression, I am aware that there are so many new combo of drugs and options that we didn't have over 20 years ago. So there's hope for all of us. I have not started any treatment yet, still two more tests and then I will see my oncologist next month.

[POT2018ery]

10 years after my initial diagnosis of stage 1 I went for my annual mammogram. There was a slight discomfort in my left armpit. After tests and scans I was diagnosed with stage 4 which had metastasized to my spine and ribs. Other lymph nodes were also involved to a much lesser degree. It’s been 5 years since I started treatment. I take faslodex shots monthly along with xgeva for bone support. I also take ibrance 21 days on and 7 days off. I’ve had minor side effects. My hair has thinned but not noticeably. My eyelashes fell out. All in all I feel good. The recrrance was hard to deal with but mbc is treatable and I am grateful for 5 wonderful years.

[monkeygirl62 in reply to POT2018ery]

Wow it's awesome you are 5 years out from MBC. It gives me hope. I would love to feel normal again.