Trying to Manage Mets BC plus CC is a... - SHARE Metastatic ...

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Trying to Manage Mets BC plus CC is a very hard thing to do...

26 Replies

Hi, I am here to seek support for my serious Metastacized Breast and Colon Cancers and also to be of any help and compassionate support to other people too. I am dealing with waiting for treatment--months and months of repeating MRI+ CT Scans over and over Biopsies with Markers put into my body and yet still-No treatment only still more and more scans. Personally, I am VERY worried!!!that there are no plans to save my life only to study my cancer progression as I get sicker and sicker :( AND TRULY MAY NOT MAKE IT. My Life is Super Important to ME and to my dog. He Needs me. We are a Team and we both need to keep on living. Stage 4 of CC is such a scary thing. I literally have NO local support AT ALL. I feel like I am being pushed to the margins and suffering very badly. Any kindness and support is GREATLY APPRECIATED. Best wishes to everyone ~ you can call me Helen Thanks SO much for all the very kind replies. I try hard to be a Good person and never smoke, never drink alcohol and always eat well and worked out my whole life. This has been devastating.

26 Replies
DDIL1 profile image
DDIL1

Hi Helen,

None of us deserve this. You did everything right. I also didn’t smoke or drink and was very athletic. I have 4 dogs, 2 indoor cats and 3 outdoor cats. My hope like so many that they continue to produce meds to extend our lives. I’ve been MBC for 15 months and it’s been a roller coaster ride. I don’t know why I couldn’t have an easier ride. You’re not alone we just have to plug along and enjoy each day as it comes. I lost my kids dad in a work related accident and my daughter to a car accident that showed me no one is guaranteed a tomorrow. I have a wonderful husband and 2 kids and 4 grandkids that I adore and don’t want to leave. Yes we know what’s coming our way so we have the opportunity to live it our way, the best we can. ❤️💜

in reply to DDIL1

Hello and thank you for your important kind words! I am so sorry you have this also and a lot of other loss too. I am no stranger to loss. Yes, you are SO right this life becomes very almost impossiblly challenging at times in ways I never would imagine. Nice to know you are still with us as Lizzo sings. I do try to holdfast to these precious birdsong daily moments. Tried to take my dog for a walk this a.m. and got caught in "a spell" of great pain. So he was ready to go and we had to turn around and come back early so I could weather the storm so to speak. Wrestling with the Pain at times becomes a thing in and of itself. Then a small miracle- hoping-the very gentle caring Surgeon who did my Colon resection has called out of the blue and wants to see me. I can only Hope and Pray he wants to help me. Earlier I answered the phone and my Medicare ins. tells me they are denying the upcoming pt scan ordered by the Cancer Onc. Ludicrous! I think that was what brought on the pain spell. Stress has a way of grabbing my colon and squeezing me in terrible ways. Having a fluffy loving patient dog helps me a lot. You are so Blessed with yr Furry family. They help so much. Thankful for yr kindness and Sending you Warm gentle hug and Much love ~ Brave Onward! 💖🙋🐦🙏

Peter97 profile image
Peter97 in reply to DDIL1

Love to you! i don`t post much infact i am new here. Because i was searching forums and help for my dear mother. I have found so much information and spoke to so many people since. If you need help please message me and i can give you quality info. I was reading trough this forum for few months now...i wish you all the best and i wish you all cure! I love you all! I am here to help the most i can. Peter from Europe/Slovakia

You are Very Sweet. Wishing you find some helpful tips and hoping your Mom gets Well as soon as possible🙏💖. Take Great Care! She is Very Lucky to have a Wonderful Son such as you 💖🙏🌄.

Peter97 profile image
Peter97

❤️

Nocillo profile image
Nocillo

Have you confronted your oncologist as to why so many tests and no treatment? We must advocate for ourselves. It’s our body and our life. If you feel nothing is happening, perhaps it’s time for a second opinion? I hope someone takes some action soon! Good luck!

in reply to Nocillo

Hi and Thank you. Yes, I will be doing that this week. It is hard to keep getting 2nd opinions bc they all know each other. It takes additional time and lessons my life expectancy. I am alone and don't have support and have to figure everything out by myself. Just doing the best I can. All I can say is I have been "confused" by the nonaction and constant testing. I did go to 3 different Dr.s after the others just wanted more and more invasive T E S T S. Starting to feel more like a research body than one whose actual life matters.

Nocillo profile image
Nocillo in reply to

Many hospitals or care centers have social workers or patient advocates. Have you spoken to any of them? Or called those connected with a larger cancer center? I know it’s a LOT of work. Nothing is easy when you are ill.

seniorcitizen profile image
seniorcitizen

I agree that your oncologist needs to do more for you beyond just studying the progression of your cancers. Good luck with tackling that issue.

in reply to seniorcitizen

Thank you so much.

fancydog profile image
fancydog

Helen, Thank you for sharing with us during this very scary time for you. I will pray for you dear lady to have peace of mind in this storm. For me personally I can deal much better with knowing what the doctors are thinking, just tell me the "Truth" then I can decide how to move forward, even if its not what I wanted. Waiting in unknowns is so hard for me. Early in this MBC journey I changed Medical Centers and that has worked out very well. Do you know if they are looking for a clinical trial for you? Again I just prayed for you🙏

in reply to fancydog

Fancydog -Thank you so much for your Prayers. I do not know what the Dr. is planning. I told the Onc. Nurse-I Need A PLAN. And I did have a big stroke of luck hopefully-I rcvd a call from the surgeon who did my colon resect. I am going to see him this week plus the Onc. this week too. Yes, I am trying so hard to advocate for myself. It is very hard when I am alone. My life matters and I intend to keep voicing that and sayingThis Cancer needs immediate treatment!!!

That it is all in my spleen- around my liver, kidneys and mets to my breast all are just not good outlooks. I am feeling devastated and wiped out from such a long battle. Just trying to stay strong and be with my dog. He is my Light and keeps me going.

These are very difficult times for me. Thank you so much I need support very badly. So grateful for your and everybodys compassion! God Bless you 💖🙏 ~

mariootsi profile image
mariootsi

My God! I'm so sorry. I hope they figure out treatment very soon! The scans and waiting are torture!

mariootsi profile image
mariootsi

You may want a second opinion

in reply to mariootsi

Yes- Thank you so much

mariootsi profile image
mariootsi in reply to

Please keep us posted!

Aquadog profile image
Aquadog

Hi Helen. What a horrible situation you're in and my heart goes out to you. Would it be possible to travel one time to a large cancer center for a second opinion? You could then be treated locally. It's not always easy to arrange that, but it sure sounds like something you should consider so you can have some answers! I can't believe all those tests and no treatments. That almost sounds like malpractice. Another idea - there are online patient advocates who may be able to help you sort all this out.

In my experience, it doesn't seem to matter if you've done all the right things health-wise. My 93 y.o. mom smoked, drank, and never exercised in her life and besides early stage dementia, mild COPD, and arthritis putting her in a wheelchair, she has no serious illnesses. I honestly think it's genetics for some of us. I got my dad's genes - his side of the family is full of cancer - lucky me.

Anyway, I sure hope you get the answers you need right away.

Sending hugs

Susan

Thank you Susan for yr kind words. You may be right that it is time to try to get to a Cancer Center for immediate treatment. I would have to figure out what to do for my elderly dog.I do feel that for many years I have experienced a sort of malpractice bc I have been trying to convince many doctors that I had a serious tumor in 2016. They all ignored me until it was nearly kiling me. The local doctors ALL refused to treat me. I have Medcare/Medicaid. This new Colon Cancer they all ignored once again until it was stage 3 now again I am in dire straits.

TammyCross profile image
TammyCross

Where are you in the world? If travel is hard because of elderly dog (I get that!), maybe you can get a virtual second opinion from one of the top cancer centers, like MD Anderson or Dana Farber or...There is a Living Beyond Breast Cancer conference next week. If you can attend virtually, you might be able to find an oncologist, get ideas from other mbc participants, ask questions. Stage 4 colon cancer is a rough one, I think harder symptoms than mbc.

Chris

Hi Chris and thank you for yr compassion. I have never tried to ask for a virtual I emailed MD several x bc I had a rare Angiomyxoma in 2016- noone here in the midwest would remove it. I finally got it out. MD emails me and says I have to physically travel there. Ugh! UHC has been the problem i think. Yesterday they robocalled to tell me they denied my PETScan. I will try to call Farber Cancer to ask if they might help. Thank you!!! This Cancer support community is so kind and Helping my Spirits a lot. Thank you so much 💖🙏🙋

TammyCross profile image
TammyCross in reply to

Mayo if you are in the Midwest? I don't know about them and cancers, but good on other diseases...🐕Someone put info about the LBBC conference in Philly. It is also virtual.

RLN-overcomer profile image
RLN-overcomer

Greetings: Sister Helen I know it is hard as you fight for your life. Try to be strong💪. I do hope/pray you will get your Dr.s acknowledgement, and a plan on the best treatment to fight/beat this cancer. I believe in GOD'S miracles back in biblical days, and that those miracles continue to exist today.👍 Like other readers have said, please look into finding a good 😇patient Advocate, or a compassionate 😇social worker who can fight on your behalf. I know they can also give you referrals, or work on who can foster, or care for your dog if needed. Helen I don't check my e-mails, except every 5-10 days, but I will pray GOD will work everything out to help you, and your fur baby XOXO. I send you many, many virtual hugs. Keep the faith🙏😇.

in reply to RLN-overcomer

Oh my Goodness Thank You SO very much! How kind of you. I desperately need the Prayers and a Miracle. They say it is in much of my spleen, all around my kidney and liver also in my stomach now. The Oncologist knows I want to fight the Cancer and that it is my mission to fight it and I have a strong will to live. I had a Real Blessing a very kind lady who took great care of my dog says she will do so again if needed. I really just need to get busy on the Chemo. I guess there is still an important biopsy that HAS to be done before they can treat it bc if it's a different kind of Cancer than the Colon or Breast that I also have that changes the type of Chemo. I Believe these Drs. And Nurses want me to live and I am VERY grateful for their Compassion.I too am Praying and Praying and Thank you again. God Bless You! 💝🙋💫😇

RLN-overcomer profile image
RLN-overcomer in reply to

XOXO

RLN-overcomer profile image
RLN-overcomer in reply to RLN-overcomer

Greetings Sister. and yesssss Warrior. I continue to lift you up prayer😇.

in reply to RLN-overcomer

Good morning RLN and I am so very Thankful for your Prayers 🙏🌺💖I hope you are doing well?

Things have gotten a lot better treatment wise. It's a bit daunting but I am ready to move forward with my prescribed treatment. Some loving and comforting people have reached out to help me.

Lots to take in and prepare for. Again, really appreciate you Praying for me.

Me and my dog are doing well. One Day at a time. Stay Blessed & Stay Well 💖🙏🌺 Thank you again

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