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I’ve seen the oncologist

Julie2233 profile image
55 Replies

Thanks for all your lovely comments on my last post, they really helped me get through the weekend.

As expected it wasn’t good news. Largest mass in liver has gone from 2.8cm to 3.5cm and all the smaller ones have also increased in size but bones are still stable. He is now going to do a liver biopsy to check the status of the cancer. There are a few options he can offer but depends on status of cancer. Feeling a bit washed out.

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Julie2233
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MyMiracle13 profile image
MyMiracle13

What can I say? I can only offer you a virtual hug. I just hope and pray that your next treatment option will zap those liver tumors.

Julie2233 profile image
Julie2233 in reply toMyMiracle13

Thank you 🙂

Tam-56 profile image
Tam-56

Oh Julie I’m sorry you are going through a rough time. I know it’s the uncertainty and the waiting that is so unsettling. It sounds like you have a great medical team caring for you. There are many new treatments out there that I know will knock those liver Mets on their butt! I’m send you a virtual hug and healing thoughts.

Julie2233 profile image
Julie2233 in reply toTam-56

We don’t have as many options as you do but there are still options and I’ll be happier after the biopsy knowing they are giving me treatment relevant to my cancer. My oncologist has no bedside manner but I trust him and we had a good discussion about options this morning and I came out feeling brighter than I went in.

Rotagirl profile image
Rotagirl

Julie, so sorry you have another mountain to climb. Thank goodness you have a team around that seems to know how to knock this cancer b....r. Virtual hugs to you.Fayx

Julie2233 profile image
Julie2233 in reply toRotagirl

Thanks Fay, yes I’m now pleased I changed to this oncologist, he seems to know what he’s doing despite his lack of communication skills.

Incidentally do you know that the haven is continuing its mbc support group through zoom meetings? Just a thought 😊

Hi Julie,

I'm sorry to hear that you did not receive the news you were hoping for. It sounds like your oncologist is right on the ball with this and already has a treatment plan for you. I hope you can quickly get going with that, as I'm sure waiting to start any new treatment is stressful for you.

Take care,

Sophie

Julie2233 profile image
Julie2233 in reply to

Thanks Sophie, I feel a lot better now I’ve spoken to him. It wasn’t the news I was hoping for but I’m so relieved that he’s agreed to do a liver biopsy so we know what type of cancer we are treating. Onward and upwards 😊

Julie

in reply toJulie2233

You're welcome, Julie. I'm glad you are feeling better and that your oncologist has been able to reassure you. I hope the liver biopsy goes well for you. I've had four biopsies since 2018.

Sophie

Hi Julie: Sorry to hear of the progression. Have you ever tried the Joe Tippens protocol with your traditional treatment? It has worked for thousands of cancer patients. Including me. You may want to check out his story:

mycancerstory.rocks/single-...

❤️🙏❤️

Julie2233 profile image
Julie2233 in reply tohopenowandtomorrow

I haven’t but I have looked into it - my sister-in-law is a dog breeder so it wouldn’t be hard to get dog wormer. I spoke to my oncologist about it and his recommendation was that it could interfere with the chemo I’m on. But I am now seriously considering it.

nstonerocks profile image
nstonerocks

Julie

I was diagnosed with liver mets this year. Getting chemo every other week. They are too small to zap. I know you must feel like you were kicked in the gut. There are a lot of treatment options. Sending a big hug. Let us know what the plan is. Take a deep breath. You can do this ❤️

Julie2233 profile image
Julie2233 in reply tonstonerocks

Thank you 😊 yes a deep breath works wonders. I am relieved that it hasn’t spread beyond the liver and the oncologist doesn’t think it’s anywhere that it will cause too many problems, so that’s a relief 😊

Barbteeth profile image
Barbteeth

Julie...I’m in a similar situation and it’s bloody horrible...you’ve probably read my posts that I’m having faslodex injections and just keeping my fingers crossed they help

It’s the not knowing what the next treatment will do...the good part is that your bones are stable so concentrate on that...ladies on here have talked about how resilient the liver is and can recover...focus on that

All the best

Barb xx

Julie2233 profile image
Julie2233 in reply toBarbteeth

It is bloody horrible! I completely agree.

I did really well on faslodex, hope you do too. Are you having it with ibrance? Nhs will only allow one course of treatment with ibrance and once you come off it you can’t restart despite evidence that it becomes effective again after a break.

I’m just so happy to be offered a liver biopsy, I asked for one last September when the oncologist suggested that the cancer’s profile could have altered, but was refused.

I still feel well and hoping that the dose of radiation will get rid of the niggling pain in my hip and back. I also need to get more active, as I think that might be part of the problem. 😊

Julie xx

Barbteeth profile image
Barbteeth in reply toJulie2233

Hi julie

Yes just on faslodex as Ibrance stopped working

I think the liver biopsy is a good plan....I had one in March and I’m having the genome test done on it

I’m pleased you’re feeling well and I want you to get sorted soon so you can move upwards and onwards and live your life and be happy

Barb xx

MacroMom profile image
MacroMom

I'm sorry Julie, it's so hard to get news like this. I'm in the liver mets club too. I'd been on Xeloda but when my December scan showed that my individual liver mets had become "areas of metastatic disease" I thought that was it. I think my oncologist was stunned too. Luckily the Abraxane seems to be beating it back. I think you are wise to get a biopsy, just in case the cancer there is a different type that may offer more options. It helped me to actually see the CT scan too and see just how huge the liver is, and that along with the mets there were still large areas that looked healthy. And thank goodness your bone mets are stable.

Hope you can keep biking. Thanks so much for the update.

Julie2233 profile image
Julie2233 in reply toMacroMom

Thanks 😊 it’s good to know I’m not alone. Onc is doubtful that abraxane will work for me but has offered me an alternative if it is still hormone positive. I’m dreading the biopsy but hoping it will give useful information at the same time 😊

MacroMom profile image
MacroMom in reply toJulie2233

Did you see the recent post about liver biopsies? There was a lot of good info, it made me feel better if I ever need one.

Julie2233 profile image
Julie2233 in reply toMacroMom

I did 😊 I read it with interest because I knew I would ask again if one wasn’t offered

Julie2233 profile image
Julie2233

Thanks Sandra 😊 yes, I feel a lot happier now and trying to take the positives. It’s still just in the liver and bones. I wear a Fitbit and know I need more exercise so that’s the new plan to get my fitness back. Working at home is too much of an excuse not to leave the desk, but I’m going to start walking again at lunchtime with at least one of the dogs instead of leaving it to my daughter. And get out on the bike, I feel so much better after a decent ride. 😊 I have a plan and I’m going to move forward!

Julie x

Teddielottie profile image
Teddielottie in reply toJulie2233

I’m glad both you and your onc have a plan ...you can do this together ! Keep getting out and make the most of the good weather . Take care ! x

I too am sending my support. It’s distressing to hear such news. Please know we are here for you.

Julie2233 profile image
Julie2233 in reply to

Thank you, I don’t know what I’d do without this forum and it’s support 😊

Thinking of you Julie and just hope your options give you more positive thoughts. Best wishes

Cheryl

I wish I knew the proper words. I hope your oncologist comes back with numerous options for you. I understand how progression can make you feel. I’m here if you need to vent. Please let us know what treatment you will go with. ❤️

Arisgram profile image
Arisgram

Hey Julie. I'm traveling down the same road as you. My biopsy is tomorrow, and I'm a wreck. Quietly, of course. I wouldn't want anyone to know!

This has sent me into a downward spiral. I spent all last week working on a will and final instructions. I'm a ridiculous pessimist, and I need to do better.

I will post after the procedure and consult. Feel free to reach out if you have any specific questions. My fingers are crossed for you!!

Andi

MacroMom profile image
MacroMom in reply toArisgram

Sending you hugs and wishes for peace as you prepare, an easy procedure and helpful results. You are in good hands.

Julie2233 profile image
Julie2233 in reply toArisgram

Hi Andi, hope its all gone well / will go well for you. If it’s not too bad please tell me what to expect, if it’s not good please don’t 😁

I did my will a couple of years ago and it was quite a funny experience. I hadn’t recognised the solicitor but she knew me as I used to clerk the local planning committee and she had clients applications before it. She started talking about long term plans and I had to tell her that we also needed provision for just in case one of us departed this life in the next couple of years. She looked shocked and I explained about having mbc and she burst into tears! I had to find her a box of tissues!

I’ve lost 3 friends unexpectedly in the last couple of months, having your will sorted is something everyone should do, no one knows what is going to happen.

We have to live with a constant reminder of our mortality which our peers don’t get, but hopefully it’s going to be a long time for both of us before we actually have to come face to face with it.

Julie x

Arisgram profile image
Arisgram in reply toJulie2233

Hey Julie. I am writing this from recovery. The only bad part was from the blood draw/IV. For some reason my veins have retreated and my blood insists on hemolyzing. A sweet phlebotomist took pity on me and had the doctor give me some oral versed so i could tolerate multiple attempts. Admittedly, I almost left. After that, I felt nothing until it was over. I was told it was in an extremely challenging spot, so i was really worried. I know I'm still high from the drugs, but no pain and I can eat whatever I want tonight@

So glad it's over. Consult with the doctor tomorrow. If you have specific questions. Don't hesitate to reach out.

Andi

Julie2233 profile image
Julie2233 in reply toArisgram

Thank you! I really appreciate you writing this from the recovery room! I have dreadful veins and they always struggle to cannulate me. But having read what you’ve written I feel so much more confident about having the procedure 😊 thank you and hope you are recovering well today xx

Beryl71 profile image
Beryl71

I'm sorry to hear that and hope this can be followed through satisfactorily. Try to treat yourself, chat to good friends, lift your spirits. X

doomkiller profile image
doomkiller

Hi Julie

You are in my thoughts. Here's a great big hug , and some of my strength too. Know that you are not alone. While this common enemy is trying its best to take everything out of us, we stand together, strong in spirit, trying to fight it. This is what I try to hold onto every day.

Courage...keep soldiering on. We are with you.

Cherie

Red1246 profile image
Red1246

Dear Julie,

So sorry to read about the progression but it’s encouraging bones are still stable. Pleased also to read your oncologist has treatment plans in mind and hope so much these will be successful.

Thinking of you and sending a big hug.

Kathleen

hdhonda profile image
hdhonda

Julie, I am so sorry you didn't get the news we were hoping for. Your plan to start exercising and biking more sounds good. It will be a relief to you to get the biopsy and results so that you can start treatment. You have a whole team with you. Blessings Hannah

Julie2233 profile image
Julie2233 in reply tohdhonda

The support from this site helps so much.

BangorBelle56 profile image
BangorBelle56

When I started this second cancer journey my big problem was my spine with tiny liver and tiny lung tumours. Unfortunately

Now my biggest worry is my liver as lung and spine are really doing well. However taxol really reduced My liver mets and at my last Scan in July the liver mets had really shrunk. Having another scan next week so hope for good news. Good treatments out there for liver mets so try not to worry x

Julie2233 profile image
Julie2233 in reply toBangorBelle56

Oncologist thinks because I had progression on cabaziltaxel the other taxels probably won’t work either which was a bit of a blow. He has said there are other options depending on the outcome of the biopsy.

Hope you get good news with your scan! 😊 xx

Rhwright12 profile image
Rhwright12

Praying for the perfect new treatment for your liver mets...🙏🏻💕

Totheriver profile image
Totheriver

So sorry to hear this Julie.....hope the biopsy goes well and they will find the best treatment for you. You are in my thoughts and prayers and have an amazing support group here to support you💕

Theresa

brake4country profile image
brake4country

Have you tried turkey tail mushroom? Researcher Paul Stamets' mother was stage 4 bc with 3 mo. prognosis with tumors in her liver. She took 8 grams of turkey tail capsules during her treatment and is now cancer free. His research is extensive. The supplement is safe with most chemos. Host Defense brand is on Amazon. Give it a try. Hugs and kisses! Conventional medicine needs to change.

Julie2233 profile image
Julie2233 in reply tobrake4country

I haven’t but will look into it, thanks 😊 x

mariootsi profile image
mariootsi

Julie,

So sorry to hear your news, but it sounds like your onc has a plan. Let us know as you go through this challenge.

Love and hugs,

Marianne

Julie2233 profile image
Julie2233 in reply tomariootsi

Thank you 😊 xx

Hi Julie

Dammit. Oh well you know you will pick yourself up and start the next phase with a positive attitude.

I will be getting my bike out tomorrow after work, and will think of you on yours

Clare x

Julie2233 profile image
Julie2233 in reply to

I will, I always do, that’s just me. I rang a friend with the news, he knew I was expecting bad news. At the end of the conversation, he commented that he didn’t know how I did it as I’d given him bad news but left him feeling completely reassured that everything was ok 😊

I wore heels to the hospital yesterday, I love my heels and have always refused to give them up but I’d forgotten about the side effects of xeloda and now have huge blisters on the soles of my feet so don’t think I will be doing much exercise for the next few days! But I’m still not giving up my heels!!

Xx

in reply toJulie2233

You are amazing.

I think you need to buy yourself a new pair of heels for when your blisters have healed. Get some of those gel soles while you are at it!!

Clare x

Julie2233 profile image
Julie2233 in reply to

Definitely! Gel insoles here I come! 😁

Francesca10 profile image
Francesca10

So sorry Julie for what you are going through right now. Hopefully next treatment will kick cancers butt

Red71 profile image
Red71

I’m sorry Julie, sending you hugs. Bad news, waiting, and a new treatment is always such a dark and wavery sort of time period. I don’t have a better way to describe it. Until we get on that new regime and know that we are working in a constructive direction it’s so hard to be positive. You are up, you are down, you talk yourself into be positive, you shed a few tears in the shower and then come out and put on a positive face. I wish we could all reach through the screen and hold hands! Elaine

Julie2233 profile image
Julie2233 in reply toRed71

That is such a good description of how waiting feels. It would be wonderful to hold hands but the understanding on this group is definitely a huge support and almost as good as a hug 🙂 xx

I wish it had been better news and it’s ok to feel down right now. Your oncologist will find a new treatment plan and then you will back fighting this crappy disease. ❤️ -Sarah

Julie2233 profile image
Julie2233 in reply to

Thanks Sarah 🙂

I’ve moved my head to it could have been worse mode. I’m concentrating on it being stable in the bones and no spread elsewhere yet 😊 I’ve got my fingers crossed that the biopsy will put us on the right track 😊

Dawn53094 profile image
Dawn53094

I’m sorry. I hope your biopsy shows news of options.

BluHydrangea profile image
BluHydrangea

So sorry for the new progression. Try to take it easy and take one day at a time. Sending positive wishes.

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