Need help on metastasis options and process

For those wanting to share with others living with secondary or metastatic breast cancer.
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Janette
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Re: Need help on metastasis options and process

Postby Janette » Wed Oct 11, 2017 10:17 pm

You can let out how you are feeling here without the need to apologise. You are allowed to feel the emotions you feel. Mums are so special. :hugs:
Janette

Dx LCIS Dec 1997, Dx IDC, DCIS, bilateral LCIS Oct 2005 er+pr+her2-
Bilateral Mastectomies, expanders and silicone implants

ruth1
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Re: Need help on metastasis options and process

Postby ruth1 » Wed Oct 11, 2017 6:09 pm

well done you for taking that step and putting things into action. - call the cancer centre and get the number - I think its Palliative Care Victoria - just make sure its the community service and not some private costly service. The social worker at the hospital will help you with these things so might be good idea to make contact there as well. They can sort out home help and so on. Let us know how you go.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Re: Need help on metastasis options and process

Postby gnamismymum » Wed Oct 11, 2017 2:20 pm

Yes its very hard I thought I would handle it a bit better as I helped my nan when she was passing and was my mother inlaws carer when she was terminal but it was over 10yrs ago n it was very hard then as my daughter was only 12mths old and she lived with us till the end. I think i was expecting it too be not as much of a shock coz I had delt with the beas before but so different when its your mum. But on the upside had another chat to her about palcare and we will talk to the nurses or doctor to get it organised, not sure if i found the right place though as when i searched Google there was 1 place called palcare but that site just seem like it was just a program for communication purposes in patients information management but i found Palliative Care Australia which seems to be the correct 1 I think?

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Re: Need help on metastasis options and process

Postby ruth1 » Wed Oct 11, 2017 8:00 am

:hugs: You are in a very hard place at this time and I am so sorry to hear of the bad results. Did the GP give any kind of opinion as to what to do next at this point?
I think you need to ask your Mum what she wants to do from now - give her the choices - she has said no more chemo and I understand why - its terribly hard to go through such hard treatment and to then be told there has been no result is devastating. I understand you not wanting to push the issue but the near future needs to organized especially as it seems she has aggressive disease. Peter Mac will have psychological support for you both if needed to deal with the future and how to cope. Also, there needs to be a plan for control of pain etc - Palcare will need to be involved soon. I think you need to approach this by saying to your Mum - you want to find the best way to get through this for you both and you need guidance from the medicos so a plan has to be put in place which might mean a trip to Peter Mac to sort things out Our health resources are stretched so there may be a waiting period for assistance and you need to have your details listed.
As hard as this is it cant be avoided - things aren't normal anymore and the everyday stuff is turned upside down. The important thing now is how to manage everyday stuff for all concerned. Caring for a person with advanced illness is not easy at all - I cared for my Mother years ago when she had terminal disease and it is by far the hardest thing I've ever done. Thankfully nowadays there is help with Palcare etc - back then that didn't exist. Even if you don't need them now at least you can find out how it all works. You need to be prepared for the time your Mum cant cope on her own anymore and household help is required - home nursing etc.
I hope you can find the strength to do all this and make the best decisions for all. Sending hugs.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Re: Need help on metastasis options and process

Postby gnamismymum » Wed Oct 11, 2017 1:19 am

Hi ruth thanks for the heads up on neulasta, she went to the gp today and he gave her the results from the ct unfortunately not good news. The chemo has not done anything there is alot more node involment from what I can understand and her largest tumor in the shoulder has grown from 58mm to 69mm and the others have grown a few mm all within in around 3 months :crybaby: I was reading the biopsy report well trying to anyway and it states that they couldnt tell if it was HER2? It would need further investigation which never happened? Im not sure if it should have been done or not?
Mum looks terrible today prob there worst I have seen her so far shes so drained! she said shes not doing anymore chemo as shes gone through all this for nothing :( which I totally understand. She had a bit of a cry which was good for her I think coz she holds it all in most of the time, I've been cryiing my heart out for most of day so its been a hard day n I'm really not optimistic about anything atm. I dont know if I can get her to go to peter mac when I mentioned it again to get a second opinion she really didn't say anything? Maybe she doesn't want to try coz she knows the beast is going to win anyway? And its hard to find the right time to talk about it again? as I feel like thats all we talk about is doctors or treatment or how she feeling she must be so over talking about it all the time. It's also hard to try n talk about everyday stuff coz nothing is normal anymore? And I dont want her to feel like I'm hounding her or grasping at straws its a really fine line to try and keep it balanced in which I feel I'm failing at doing atm.im just feeling so lost atm I dont know what I can and should be doing to help :sad: sorry if I always seem a bit scatted my brain is just running like a popcorn machine lately :heart:

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Re: Need help on metastasis options and process

Postby ruth1 » Wed Oct 04, 2017 7:02 pm

well good and not so good there - there is a drug given to prevent neutropenia - its called Neulasta - my white blood cells went to zero after first chemo and it was given to me and no further problems. Its very expensive (injectable) but can be given free to public patients - maybe you should ask why that wasn't used? I think a second opinion asap is definitely called for here - Peter Mac I think would be a lot better than regional.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Re: Need help on metastasis options and process

Postby gnamismymum » Wed Oct 04, 2017 5:39 pm

Thanks ruth it definitely helps talking to people that understand :D we went to the onc he was a bit better and mum got pretty firm with him today which was good all she wanted was the reason they wont operate she understood that its not curitive its just the pain its causes and cant sleep because of it. But he has told us that its to adhered and the adhesions are on to many different muscles and it would be a last resort as it would be a huge and very difficult operation she didn't quite understand but I explained it the best I could unfortunately we got more bad news she has another new lump near the large shouldet tumor onc is unsure on what it is and its growing more in her arm pit now :( the onc seems to think it might be because he had to lower the chemo dosage as it was hitting her to hard and put her in hospital her blood count was at 0.02 :( which sucks coz it was shrinking. She had her scan today to see whats changed so we will have to wait n see? He said the next option would be radiation and possibly another hormone treatment but these are limited due to her osteoporosis. but on the upside I think shes considering a second opinion and she not ready for palcare as yet but at least she knows about it. Thanks agian will keep you updated.
:hugs: gb

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Re: Need help on metastasis options and process

Postby ruth1 » Mon Oct 02, 2017 9:36 am

no need to apologise here - we have all had our meltdown moments. With the Onc tomorrow - speaking from experience - the mind is a strange thing - I find that I go in with a head full of questions and come out and cant remember what was said - I would suggest you take pad and pen and don't let them rush you. If you don't understand ask again until you do. Take a list of questions that you want answered and leave room for the answer to be written in point form as he speaks to you. That way you can remember it. I think its because of being emotional that the mind shuts off a bit. I think a second opinion from an Onc at Peter Mac might be a good thing to do. With this we have to advocate for ourselves quite often and make choices that are needed. I don't know the hospital you are at but PM is a cancer specialist hospital so might be better to go there.

See the social worker too if you can as they will give you an idea of what you can access even if its down the track you will be prepared. Same with Palcare - your Mum perhaps can be persuaded by just saying its to see whats around in case its needed later on. I think the thing of not letting people help is trying to hold on to that little bit of control over her own life - its hard to let go of that when you've always been independent and able bodied.I understand her not wanting to travel - Ive had days when cooking a meal seems like Mount Everest so 2 hours travel and the having to walk and deal with waiting rooms etc is daunting. If you don't get satisfactory answers you do need a second opinion but that will be a exhausting for her.

We are resilient women but only because we have no choice - it is what it is and we just have to deal with it all - I am so glad you are understanding about treatment choice - your Mum will be too. Keep doing what your doing - sneaky is good if that's how it has to be - I'm sure your Mum appreciates it a lot and you are being such a great support under these very difficult circumstances. Hugs back to you.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Re: Need help on metastasis options and process

Postby gnamismymum » Mon Oct 02, 2017 2:55 am

Hi ladies :wave:
Sorry had a few bad days emotionally I tend to cry for days lately :( we are of to the onc tomorrow so we will try once again to get some answers fingers crossed, if not I will try and talk to her n see if she will get a second opinion. We are in Gippsland so only a couple of hrs from melb but mums not much of a traveller she did get her tests done at st vincents which peter mac in Melbourne organized for her. As the onc actually thought it was sarcoma? And not her breast cancer in which he was supprised when it turned out to be the breast cancer, he said that it would be the same treatment here as at peter mac? I definitely agree that it is her choice on which way she wants to go with or without treatment and we have had that conversation to reassure her that she has to do whats best for her and not for us? and to do whatever makes her comfortable. Too be honest ladies I think you are all amazingly strong, I don't think I could go through it im not that strong maybe because already seen what cancer does and I know whats coming :( .I would like her to be fully informed of everything just do she can make an educated choice, we did speak to the cancer nurses at the start but they didn't have any answers either but did tell us that we need to be firmer with the onc. I will have a look into palcare not sure mum will go for that type of help yet, as I have to sneak up to her house when shes not home and clean for her lol but she still gets a little grumpy if she finds out so im getting better at being sneaky lol mum can be stubborn when it comes to letting people help. Thank you all so so much for help its truly appreciated :heart: sending u all big hugs.

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Re: Need help on metastasis options and process

Postby The new girl » Sun Oct 01, 2017 3:24 am

:wave: hi gb,I think getting a second opinion is the best advice your mums oncologist sounds very insesative
Wishing mum all the best,I hope you find some real options soon
Rosa

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Re: Need help on metastasis options and process

Postby jezza » Sat Sep 30, 2017 7:06 pm

Has your mum got a breast care nurse? They are usually great as a go between to help explain things. I have never heard of a specialist not sending all reports and results to a patient's GP. Also Palcare sounds scarey but they are invaluable in letting you know what you are entitled to and can help in so many ways. Some people have dealings with them for years and always speak highly of them. They will support you and you ...don't be hesitant to ask for help.

I agree....ask for a referral to another oncologist. I'm so sorry you were treated like that. It shouldn't happen.

Hugs

Jezza
Dx Jan. 1992 9mm Grade 3 IDC node neg. LB mast. Prophylactic RB mast. 6 months later. No chemo. No rads. Saline implants. 22 years NED. (No Evidence of Disease)

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Re: Need help on metastasis options and process

Postby schoolteacher » Sat Sep 30, 2017 5:05 pm

Hi GB
:hugs: to you and your mum. What a scary, awful time for you all. It sounds as if the disease is quite advanced, no ones fault, it's the nature of the beast. You do sound confused and I think it would be reasonable for you to seek a second opinion frommsomeone who can talk you through the results/scans. You both have a right to know where you stand.
A big centre like Peter Mac could be helpful as there are often trials of new therapies that can buy mum more time, though not a cure sadly.
Treatment is tough so it is mums choice in the end, but it needs to be an informed choice, do more explanation is needed.
Tough times ahead for you. We are here to support you as much as we can :hugs:
DX OCT 08, 9mm Her2+ grade 3 tumour and DCIS. Nodes clear, wide local incision, unclear margins so LB mastectomy, chemo Taxotere Carboplatin Herceptin Tram Flap Nov 2011

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Re: Need help on metastasis options and process

Postby Pamelamary » Fri Sep 29, 2017 7:17 pm

Hi Gb,
I am sorry you have found yourself in this situation and hope you will continue to support your mother. Surgery is not often used for advanced disease, especially when multiple sites are found. Sometimes radiation can be used, but chemo is the most common treatment. There are also the targeted therapies; while Tamoxifen may not have worked for your mother, there are many other hormone therapies.
All these treatments aim at controlling the cancer, not curing it. Pal Care is a great resource and can help people live more comfortably. Most importantly, you have a right to a second opinion and can ask your mother's GP to refer her to another oncologist. While oncologists are busy people, they have a duty to explain things like the pathology report and treatment options.
I hope you can help your mother make informed choices about the path ahead.
Best wishes..... Pam

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Re: Need help on metastasis options and process

Postby ruth1 » Fri Sep 29, 2017 4:40 pm

Hi GB and welcome to the forum but I'm so sorry it has to be because of such terrible circumstances.
First question is - are you in a country area or close to a large city hospital? None of us here on the forum are medicos so cant give you any medical advice and it sounds like you need to go somewhere and get a full consultation with someone who will be patient and explain everything to you. You mention going to Melbourne so can you get referred to Peter Mac Cancer Hospital?
If the Onc has said its time for palliative care then you should contact Palcare services asap and see who you can talk to and what services are in your area.
It sounds like the Onc is of the opinion that your poor Mum has advanced disease and is possibly beyond surgery being able to do anything for her. I lost my Mum from breast cancer many years ago now but it was the hardest time so my heart goes out to you. In order to make sense of where things are at you do need to get it straight in your own mind how extensive the disease is and if there are or aren't treatment options.
Please do keep in mind the chemo is a horrible experience and it has to be a choice whether to continue it or not. I can see why you are scared, angry and confused by all this and all you want is your Mum to fight on. I can honestly say that the health system is overwhelmed with this disease so maybe the Onc is trying to deal with a terrible situation the best he can - I've been a public patient and found the care I have been given to be great under the circumstances but I know the Oncs can seem a bit hasty at times.
Take a deep breath and start a plan yourself - go to the Cancer Centre where your Mum is being treated and calmy but strongly ask to see someone who can explain properly to you what the heck is happening here. Contact Palcare in your area and tell them the Onc has said they need to get involved and see how all that works. See the social worker at the hospital you go to because they can set up all kinds of assistance. Keep in touch here and we will all help you as best we can. Sending you and your Mum a huge hug!!! :hugs:
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Need help on metastasis options and process

Postby gnamismymum » Fri Sep 29, 2017 2:18 pm

Hi everyone this is my very first time on a forum to be honest im at a loss on where to start but im hoping someone can clarify or help in anyway. My mum was recently diagnosed with matastic breast cancer, which was a huge shock as we were not informed that her original cancer was aggressive? I just happened to find this out by reading a referral? She had a lumpectomy to remove cancer and her lymph nodes where clear and had radiation treatment also n was given the all clear to which we where estatic about. But little did we know 12 mths later she found a very large and fast growing lump on her opposite shoulder it took a number of months to get a ct pet and biopsy done as I had to follow up lost referrals from her oncologists.We had to go to melb to get these done as our local cancer center does not have pet scans available.
She has a 7.3 x8.8cm tumor in her left posterior shoulder between the latissimus, dorsi and triceps with left axillary, hillar left lower paratracheal and upper retroperitoneal intensely fdg avld lymphadenopathy whatever that means? also both adrenal glands 2.6cm on left and 4.5cm necrotic mass on the right whith a 4mm left lower lobe superior segment nodule is below PET resolution so I have no idea where that mass is lungs? or liver? I have been stuggling tryin to find information on what her treatment options are., her oncologists is terrible he doesn't answer questions or explian things throughly? He did say that all he can do is offer palative care? We asked about surgery twice n both times he has just said no? When asked why he said they just dont do it? Shouldn't she be given a choice on her treatment?
Arrrgh :mad: so angry with his attitude and now my mum said shes not gunna bother with any more chemo coz shes just gunna die anway? I just need some help or direction my mum has always been a strong and a fighter but this oncologist gives her no options or even a plan of attack, so she figures it just a waste of time.
Its like he doesn't give too hoots so why should she? there is a chance she may be able to live a little longer. I know its not curable but I thought an oncologist would actually care a little but not him maybe its just because she is a public patient. she is on her 4th session of chemo and her gp has no info at all from the oncologists I think its just not acceptable in my view. Sorry I know this is long n a bit scattered but I really need help on what I can do to help my mum im going to miss her immensely :bawl: . All we know is that it is er and pr positive with no indication of HER2, her chemo is anti cycle invasive chemo as she has not responded to the hormone therapy tamoxifen that she has been taking since first diagnosed.
Thanks
Gb


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