New to the Club

Options
Lillymillie
Lillymillie Member Posts: 192
edited March 2016 in Stage IV/Metastatic Breast Cancer ONLY

Hi there, not sure where Im supposed to post really. Was originally diagnosed with stage 3, 4 nodes, IDC 4 years ago. Just found out it has spread to a small area my pelvis. There is also a tiny shadow on my liver with they are not sure about. Feel like a bomb has gone off, I have a wonderful husband who is devastated (he was so sure that was the end of it after inital treatment) and a 5 year old. Waiting for PET scan and will meet onc on Monday. can they cut the shadow out? it could be hormones for pelvis but chemo if in my liver. Could do with some reassurance with such a gloomy diagnosis. thanks in advance x

· Share on FacebookShare on Twitter

Comments

  • 50sgirl
    50sgirl Member Posts: 2,527
    edited March 2016

    Lillymillie, Welcome. I am sorry you have had to join us. I know it is scary when you hear that diagnosis and read what it means. All of us on the stage IV threads were frightened. We all read the statistics and assumed the worst. When I was diagnosed last June, I wondered if I would make it to Christmas. Well, guess what! I am still here, and I expect to enjoy many more Christmases, and summers, and vacations, and birthdays, you name it. First let me address those dreaded statistics. They are nothing but a bunch of numbers. Worst of all, they are outdated. We are not data points. We are individuals. There have been many advances in treatment over the past several years, but they are not reflected in stats. There are many people who have survived for many, many years with stage IV bc. Many people on these boards are stable with no progression. Some are now NED (no evidence of disease) and have been for several years. These are real possibilities for you. These first several weeks will be the most difficult for you. It is good that you and your DH are there to support each other. Remember that treatments are available, and your onc will find the one that will be effective for you. Once you have a plan in place, you will start to feel better. Hugs and prayers for you.

    Lynne

    · Share on FacebookShare on Twitter
  • 50sgirl
    50sgirl Member Posts: 2,527
    edited March 2016

    I almost forgot. There is a Bone Mets thread that has wonderful supportive women contributing. You can ask any questions you have there. There is also a thread for people with livers mets. I am not as familiar with it, but there are great people there to help you, too. We are all in this together, and we aLl help each other in any way possible.

    Lynne

    · Share on FacebookShare on Twitter
  • Moderators
    Moderators Member Posts: 25,912
    edited March 2016

    Lillymillie , we're sorry for the unwelcome news... and sending loads of hugs. Hope they put in place a good treatment plan that knocks the cancer back! Here is the Topic: Bone Mets Thread that Lynne mentions above in case you want to read/join.

    We're sending nothing but good thoughts.

    The Mods

    Edited to update with correct link.

    · Share on FacebookShare on Twitter
  • Lillymillie
    Lillymillie Member Posts: 192
    edited March 2016

    thanks 50s girl (lynne) it helps to know I'm not alone and very positive stories out there. You tend to only remember the sad and bad ones. I am doing my dr. google again which I remember I did a lot of first time around. Will read the bone thread so I have a few things formulated in my head before I see my onc, thanks

    · Share on FacebookShare on Twitter
  • steelrose
    steelrose Member Posts: 3,798
    edited March 2016

    Hi Lillymillie…

    I'm so sorry you have to join us here. But as Lynne said, there is real hope for years at stage iv now. I was diagnosed over six years ago with mets to spine/sternum/liver, and I'm still here!! There are many women who are doing very well at stage iv, thanks to the drugs that are now available. Once you get your plan in place, you will begin to feel more assured… these early days are the worst part of it all.

    Sending love to you!

    Rose.

    · Share on FacebookShare on Twitter
  • pajim
    pajim Member Posts: 2,785
    edited March 2016

    Lillymillie, welcome to Club Mets. Very exclusive, only the best people join. :-)

    You're posting in the right place. Please know that the first few weeks can be just awful. Once you know what you're dealing with and you have a treatment plan things will get better. I promise.

    Meantime (if you need it) ask for sleeping meds, anti-anxiety meds, anti-depressants, whatever helps you. Your husband too. We get all the attention but our spouses can need help too.

    I've been at this three years now. ER+ mets to the bone. There was a lung nodule but they decided to ignore it at the time and have turned out to be right. I've only just started my second med. I expect to be alive a good long time. Much depends on how you respond to the various treatments.

    Check out the thread on "Life does NOT end with a Stage IV diagnosis". . .

    https://community.breastcancer.org/forum/8/topics/818931?page=39#idx_1156

    Best of luck to you and many hugs to both you and your family.

    · Share on FacebookShare on Twitter
  • Lillymillie
    Lillymillie Member Posts: 192
    edited March 2016

    Thanks Pajim, thanks too for taking time to reply. Don't mind the sleeping, anxiety meds, I was thinking of a bucket of wine but in the circumstances probably not the wisest choice 😂. Great you are doing well. I'll check out that thread

    · Share on FacebookShare on Twitter
  • artistatheart
    artistatheart Member Posts: 2,176
    edited March 2016

    Lilly, I was Dx'd right out of the gate with liver mets. I have been doing AI's for 7 months and am doing pretty well so far. When this current Tx starts fizzling out there are others before chemo. So IF that shadow turns out positive there are a lot of options available and very tolerable. My point is hopefully it is not positive but if so don't panic. I would peruse this whole sight to find subjects that interest you. You will learn so much and gain a lot of confidence and comfort from all the amazing women here. It does get easier to cope as time goes on.

    · Share on FacebookShare on Twitter
  • Lillymillie
    Lillymillie Member Posts: 192
    edited March 2016

    thanks artistatheart. that's good your treatment is working well for you. I have a PET scan booked in for saturday and will have results for meeting with onc on monday night. Should know where I stand then. Consultant said if it's a liver met we will do chemo and Bisphosphonates (is that even a treatment?) if it's just bone. Would rather avoid chemo for now if at all possible. I don't want my kid or family to see me look like that again, he was a baby first time around but it would really be difficult for him now. I will do it if I have to of course but last time onc wouldn't let me use cold cap (maybe none available at our hospital)

    I'm based in the UK and am not sure if there treatment paths are similar to US. I had asked if it was possible to remove shadow if it turns out to be a met by surgery and she told me it's a possiblity. have read about some surgeons in UK who just go straight for Liver met surgery first but a new approach. It's very difficult to know what's right especially as they originally seemed confident that after first treatment that was the end of it. They don't do tumour markers so follow up is really a question and answer session and hand examination. I was always told I'd feel mets. I had no pain and just asked for a reassurance scan. I had asked several times if I needed my ovaries shut down but I was told no that I needed the estrogen for bone health and tamoxifen would look after me...damn you tamoxifen, you took your eye off the job! Am reading through the thread so at least I can have a 'what about this list' and 'what does this mean' list.

    · Share on FacebookShare on Twitter
  • 50sgirl
    50sgirl Member Posts: 2,527
    edited March 2016

    Lillymillie, I realize this is getting way ahead of things, but if you find out that you do not have liver mets and have only one or two bone mets, you should ask your MO about treatment for oligometastatic breast cancer. Sometimes if there are only a few bone mets, a different approach can be taken. There was a thread about it a while back. I have not followed it since I have extensive bone mets. You can also google it. As I said, it is premature to think much about it right now, but I want you to be prepared to ask any questions that apply.

    Lynne

    · Share on FacebookShare on Twitter
  • Lillymillie
    Lillymillie Member Posts: 192
    edited March 2016

    Thanks Lynne, I will definitely ask onc about that and might get a second opinion from one of the bigger London hospitals. Thanks, this site is so good for gathering information and just what I need 😊

    · Share on FacebookShare on Twitter
  • Lillymillie
    Lillymillie Member Posts: 192
    edited March 2016

    Thanks Bonnie. Yeah at least I'll know what exactly we are dealing with. Definitely not looking forward to results of this one xx

    · Share on FacebookShare on Twitter
  • pajim
    pajim Member Posts: 2,785
    edited March 2016

    Lillymillie, I believe in wine. Lots of wine. Go right ahead. Good luck with the PET!

    · Share on FacebookShare on Twitter
  • Lillymillie
    Lillymillie Member Posts: 192
    edited March 2016

    Thanks pajim, I think I might award myself a cheeky glass on Saturday night after the pet. Apparently I have to stay away from babies at children for at least 6 hours as I'll be radioactive!!! I have a family birthday on sat night and I'm wondering if I'll be glowing in the dark 😂

    · Share on FacebookShare on Twitter
  • 50sgirl
    50sgirl Member Posts: 2,527
    edited March 2016

    Just think of all the advantages of glowing in the dark at night! You'll be the hit of that party

    · Share on FacebookShare on Twitter
  • Lillymillie
    Lillymillie Member Posts: 192
    edited March 2016

    Just an update, had meeting with oncologist early this evening. Liver shadow is not a met so dealing with pelvis met and some more investigation into tiny femur irregularity. He said they would shut down the ovaries, chemically or surgically and give me some else for the estrogen the rest of my body makes maybe femara . I have to get a bone biopsy first and a radiologist is going to cross ref my various scans so everything is accounted for. A good few areas of inflammation from previous surgeries etc. Treatment plan not in place yet until we get be biopsy and check femur. Radiation mentioned too but nothing confirmed.

    My oncologist is not very positive normally but today he was very positive about the 'many, many' treatments available now and how lots of his bone met patients are doing extremely well and several are 10years plus. This was good to hear.

    · Share on FacebookShare on Twitter
  • artistatheart
    artistatheart Member Posts: 2,176
    edited March 2016

    THAT IS SOME PRETTY POSITIVE NEWS ABOUT YOUR LIVER! WHOOP WHOOP!

    · Share on FacebookShare on Twitter
  • pajim
    pajim Member Posts: 2,785
    edited March 2016

    Excellent! (for the fact that you have mets). Welcome to the world of hot flashes, but with luck treatment will [otherwise] be easy.

    · Share on FacebookShare on Twitter
  • 50sgirl
    50sgirl Member Posts: 2,527
    edited March 2016

    Lillymillie, WOOHOO! I am happy you do not have liver mets. I am also glad to hear that your onc has such a positive attitude. That is important. Once you begin your treatment, things will settle down for you.

    Lynne

    · Share on FacebookShare on Twitter
  • Lillymillie
    Lillymillie Member Posts: 192
    edited March 2016

    Hey Bon,

    Oncologist had originally said he would chemically shut down as my ovaries as I had 9 or 10 operations already due to bc and recon and he didn't want to put me through any more. I'm fit and able so don't mind them yanking it all out. Will mention that next week thanks.

    · Share on FacebookShare on Twitter
  • Lillymillie
    Lillymillie Member Posts: 192
    edited March 2016

    Just missed a thank you to steelrose. 6 years is just brilliant and so encouraging. This forum has been great for information. I mentioned Ibrance to him as a lot of ladies are taking it. It has not yet been rolled out in UK yet but will be by end of year. He is looking into it that too

    · Share on FacebookShare on Twitter
  • Lillymillie
    Lillymillie Member Posts: 192
    edited March 2016

    Actually bon, oncologist mentioned that my ovaries were slighly enlarged...no cancer showed there but what the hell could that be?

    Also some enlarged nodes in my chest. Think I am only starting to digest report now. and wondering what this all might mean!! delayed panic perhaps

    · Share on FacebookShare on Twitter

Categories