Hi all,I thought I was off this merry go round that is cancer. I've just been diagnosed with METS on 2 ribs(one each side), humeral head, scapula and a also in pelvic bone. I originally thought it was only in the 2 ribs which were discovered via a bone scan and then a follow up MRI. I elected to pay the exhorbitant fee for the PET scan and my breast surgeon has just called tonight to tell me it's in the places other than ribs. He has said they are only tiny spots. At my oncologist appt the week before xmas (when all i had was the 2 rib mets) the game plan was shit hot drugs as she called them - letrozole and ribociclib, then a massive single dose of radiation to the ribs.Now, I'm not sure what next step will be seeing as though its in different spots. She did tell me at my last appt not to google but to come in here so here I am.Sorry, this is really rambling.I am absolutely shit scared, I have 2 kids who are young teenagers and have recently divorced my partner, long story but he couldn't cope with my ongoing medical issues as cancer was 95% caused by me according to him and I couldn't live with the ongoing guilt. Now I'm in limbo land with everything.<My oncologist is away until mid Jan when I have my next review. Hoping for any words of wisdom, the letrozole is absolutely killing my joints in my feet particularly and I haven't even started the ribociclib and won't until the review with her.Thanks in advance xoxox

Thanks so much for answering my whirlwind post!I've requested to join the METs group and I've ordered the My journey kit also.The breast care nurse will apparently call me next week to discuss what's next. I think the night's are the worst as you think of all the "what if" questions, what if it's something I did wrong, what if it's something I ate blah blah blah and unfortunately that was what my ex focussed on a lot of the time so not helpful at all. xoxoxo

Hi joinmelb, sorry you are back again like kmakm I have no answers but some suggestions.....here is the link to join the living with mets group.... http://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancerBelow are a couple of links to help you find your way around the forum and also how to find a breast care nurse and how to order a MY journey Kit if you haven't got one yet. It can be a whirlwind when we first get a diagnosed.... Breathe and take it one step at a time. How to post on the main forum – use this link to get to the main forum and begin a new post. https://onlinenetwork.bcna.org.au/post/discussion Navigating the online community formerly the what and how thread.http://onlinenetwork.bcna.org.au/discussion/14879/navigating-the-online-community-formerly-the-what-and-how-threadBreast Care Nurseshttps://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx My Journey online tool and other resources. My Journey Online Tool resourceshttps://myjourney.org.au/hp/step5https://www.bcna.org.au/resources/BCNA Helpline 1800 500 258If you have any questions, concerns or require any further information or support please call 1800 500 258. BCNA’s helpline will now be open from 9am-6pm Monday to Thursday and 9am to 5pm Fridays. How to understand your pathology reportshttps://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/breast-pathology/breast-cancer-pathology.html

Hi @Joinmelb I'm sorry to hear the bloody thing is back. Some of the Mets ladies will be able to give you better advice about the next steps treatment wise, but you not alone in hating the AI treatment and it's miserable bastard side effects. Letrozole is a terrific drug for containing boney Mets, which is what it was originally designed to do, and mid January is just around the corner so stick with it for the next week or so.There is no point in digging around looking for possible misdeeds which we could have committed to put ourselves in this situation and we most certainly don't want to be hanging around with someone who relentlessly persues that task for us. Life will be easier without being constantly blamed for something that is not your fault. And it is not your fault, you've just won a particularly crappy lottery. Mxx

Hi @Joinmelb, I was on Letrozole for over 12months, this medication is great and but side effects are that it turns us into old women. I find once I get moving, the feet don't hurt so much. I also invested in a pair of birkenstocks which have helped the feet. I have numerous bone lesions and have had a couple of surgeries to stabilise the long bones (humerus and femur). For the lesions, it depends on what they are - whether they are sclerotic or lytic lesions. All mine are sclerotic (maybe 1 is a mixed lesion). I've had radiation to my really sore spots (lumbar, sacrum and humerus and shoulder). I also have teenage children, 19 & 14. I was diagnosed in Sept 2016 ( 2years ago). As written above, there are many links to information. Also, you are not to blame for your diagnosis. Cancer is indiscriminate and has no bias. Your husband is externalising his own guilt/issues onto you which isn't fair. I see occasionally, a psychologist that is part of the cancer clinic, they are very helpful especially when stress levels are high.Kind regardsAnne xo

Hi @Joinmelb, I have sent you a private message,wendy55

new bone lesions....help whats next for me

22 Replies

Sister
Member
7 years ago
@joinmelb So glad things are going in the right direction. Take care.
kmakm
Member
7 years ago
Thank you for popping in and updating us. I'm so pleased to hear you're doing so well! K xox
iserbrown
Member
7 years ago
@Joinmelb

Sounds like you're kicking goals!
Be proud and give yourself a well deserved pat on the back
Take care
Joinmelb
Member
7 years ago
Hi all,
Just thought I should pop in and give an update to you all.
My tumour markers on bloods are dropping still or remaining stable so the combo of letrozole and ribociclib is definitely working!! I've had repeat bone scans which showed my shoulder tumour which didn't show up on original bone scan (but did on PET scan). I thought this was shit news as I figured it meant it had progressed but nope oncologist assures me that's the way a healing bone will show up on a bone scan. I trust her implicitly and have a deal with her that she's not to sugar coat anything! Despite weight gain, which i can live with, I've only really noticed considerable tiredness but as a single mum who is still working she assures me most people would be bloody tired with what I deal with every day!! I'm still managing to work part time and have actually increased my hours this last few months as cancer isn't exactly a cheap thing to have! I'm surrounded by amazing family and friends who have my back at all times! I cried recently when my breast surgeon made a review appt for June next year and I said that 6 months ago I didn't think I'd be here to be making appts in mid 2020! I'm trying to take each day as it comes and be grateful for the amazing advances in treatment every day
Much love to all xoxoxoxoox
MeganM
Member
7 years ago
@Joinmelb I’m in the same boat and on the suggested treatment plan. Hope by now you’ve been able to meet again with your Oncology Team and they have provided answers and some reassurance too
Finch
Member
7 years ago
@Joinmelb , sorry to hear about your mets. Don't ever think you're to blame for your breast cancer. Nothing you've done has caused it. You are well rid of your husband and as someone else said, he probably caused it from the stress he gave you. I too believe internal stress has a lot to blame . Wishing you the best.
@Angelo thinking of you also, take care. Hugs xx
Lisa1407
Member
7 years ago
Hi @Joinmelb
Sorry to hear that you have more bone mets than originally expected. Your treatment probably won't change as you just have more mets all of which are bone. They may hold off on radiation. I have lots of bone mets in and around my right hip and I have chosen to leave radiation until I am in more pain as radiation (for me at least) is not about controlling the cancer but is about controlling pain.

You can still have lots of success on the drug combination even though you have more bone mets, so don't get too worried.

Sorry also to hear about your husband - I think your cancer is more likely to be caused by him! Although there is no data to support, I am a firm believer in stress causing cancer. Also, many of us were diagnosed with cancer not long after stressful divorces!!

Look after yourself
Lisa xx
Angelo
Member
7 years ago
Yes, joined the group and everyone has been wonderful. I hope I’m going to be as fortunate as your buddy....the caravan is ready to go x
arpie
Member
7 years ago
That's a real bugger, @Angelo .... Have you joined the 'Mets Group'? It is a private group (not accessible by the public) where you can ask away any questions ......

All the best for your ongoing treatment.

A buddy who had BC 15 years ago developed cancer in her lung 18 months ago & underwent successful surgery. It was caught early (found by mistake when they were checking her Thyroid) and altho she has emphysema, has had a good recovery. She thought it may have been caused by her Rads, which was immediately above 'the lesion'! She is now out on the road in her caravan, going wherever she wants to, fishing her way around Australia!!

Take care xx
Angelo
Member
7 years ago
Totally get the “shit scared” and all the “what ifs” ....... I’ve just recently been diagnosed with Mets in the lung and have commenced treatment over the Christmas and New Year period. I’ve had some real crap days but what got me through was this group of wonderful, supportive and loving ladies. Keep positive and take one day at a time xxx