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

Joinmelb

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

kmakm

I am so sorry @Joinmelb. This is an absolute prick of a disease. I'm not in any position to contribute, other than to say I'm thinking of you, and I hope you have good support around you at this time. I'm glad your onc sent you here. I hope you find it helpful and supportive. The BCNA helpline reopens on Monday. Perhaps give them a call. 1800 500 258. Biggest of hugs, K xox

SoldierCrab

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-cancer

Below 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-thread

Breast Care Nurses

https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

My Journey online tool and other resources. 

My Journey Online Tool resources
https://myjourney.org.au/hp/step5

https://www.bcna.org.au/resources/

BCNA Helpline 1800 500 258

If 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 reports

https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/breast-pathology/breast-cancer-pathology.html

Sister

Shit! I have no advice to offer but hopefully one of the ladies on the mets group can help.

As for your ex-husband, I'm sure you know you're well shot of him.  It doesn't help with 2 teenage kids, though.  Have you got a support network around you to help with stuff?

Zoffiel

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

Joinmelb

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

kmakm

Not at all helpful... And utterly pointless. Sounds as if you're better off without that negativity in your life.

If you're up nights you can always post in Night Howls. When we're wakeful in the wee small hours that's where we congregate. K xox

https://onlinenetwork.bcna.org.au/discussion/19269/night-howls#latest

Joinmelb

Thanks kmakm

Anne94

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 regards
Anne xo

wendy55

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

wendy55

arpie

Hi @Joinmelb  -  that's a real bugger of a diagnosis - you've already had a really hard slog one way & another.  I hope that your treatment plan is sorted soon & that it at least contains the mets 'as is' ...

Sending big hugs to you you & all the best with your ongoing treatment xxxx

SoldierCrab

hi Joinmelb - forgot this one in the middle of the night 

https://www.bcna.org.au/resource/kits/hope-hurdles/

Jenny_BCNA

Hi @Joinmelb sending you a private message

Angelo

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

arpie

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

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