Hi there ...

Well I can really understand your mum ... l did the same as her for my reasons ... two years l was pretty sure my lump was cancer , although I'd had 4 previous call back over the years that were benign ... 

The only reason it came up was a chest x ray from a chest infection ... l was adamant too on no treatment ... but I was told it would soon come through the skin and would not heal ... my surgeon gave me all the facts... then time to weigh them up ... and for ME to decide ...

With all support and no pressure .. I agreed to a total right masectomy ... mine was a grade 3 ... the operation itself was quite painless ... l was offered radiotherapy,  which due to my many bone problems declined ... but I did agree to tamoxifen for the next 5 or so years ... 

So your mum, faces those decisions now ... and whatever she decides must be her choice ... give her all the facts about any treatment ... I know if any pressure would have been put on me, I'd have done nothing ... so if l were you I'd be so proud of your mum .. and you know 8 years is amazing .. after her seeing what your dad went through, she knows all to well what may lie ahead of her ... 

I know everyone wants their parents here forever ... but no mater anyone's age ... it's the only control we have on this journey ...  l hope you can find the courage to hold your mum's hand whatever path she chooses ...  Chrissie x

Thank you Chrissie,

I know my mom will do this her way, and I understand and appreciate that.  

I guess I’m just trying to establish what she’s up against and the prognosis given it’s clearly very advanced. 

I did read that such ulcerations of the tumour /skin do not heal.

I’m off to the hospital shortly and hopefully someone else can tell us more.

Any idea how long CT results take when you have them as an inpatient?

thanks again and wishing you well

Hi ...

Sorry I've no idea how long , but I recon it should be pretty quick if done while an inpatient.. 

I don't want to sway her one way or another ... but if you just pass on, the masectomy was the easiest part for me ... lots on here have had it done as a day patient ... home in the evening with a cupper ... and all have said it was a lot less painful then they thought ...

One option is, have the masectomy but no chemo if she's still sure ... l just know for me , it was a no brainer , l wouldn't have had chemo either ... but just give her all the info ... mine was a grade 3 ... and I'm still here nearly two years on, and doing well ... but good luck ... I'm sure your mum will be really pleased to get a bit of control back ..

 I believe everyone should have options ... and a bit of time with all the info ... let me know how it goes ..

Chrissie xx

Thank you.just back from visiting. The Dr hasn’t been to see her at all today! The nurse did say the CT scan results are always readily available for when the doc has time to look!

one thing mom did say is that she was going to ask what the prognosis was with the different options, so that is slight progress with regards to considering treatment I guess.

hopefully my siblings will get an update later x

Hi Nitnatc,

Welcome to our community, although I'm sorry for the reason you've joined. I cannot say that I blame your mom for not wanting further treatment, after experiencing what your step-dad went through in 1991-1994 with chemo.

I watched my own mum have a mastectomy and then suffer treatment  before dying from secondary breast cancer. That was 21 years ago. It was a horrific way to go and when I was diagnosed with breast cancer 9 years ago. I had a lumpectomy, but refused radiotherapy or chemo treatment. I did however take Tamoxifen for 1 year.

Unfortunately, I had a second cancer in the same breast the following year, so I had a double mastectomy followed by Letrozole for 6 years. As Chrissie has said, the mastectomy was easier than the lumpectomy for me. I stopped taking Letrozole in July 2017 and I haven't looked back since. The decision has to come from your mom and, whatever she decides, she will need the support of all the family once she has reached the right decision for her. Many people choose quality of life over length of life for purely practical reasons.

If your mom's breast has already ulcerated and come through her skin, chances are that you are correct and it is pretty advanced. Can you and/or your sister make an appointment to discuss your mom's cancer with her consultant? S/he should be able to give you her prognosis, treatment plan, etc.

I have usually found that the results of any CT scans done as an inpatient are back almost immediately. You may find it useful to draw up a list of questions for her consultant prior to having any discussion. This way you are less likely to forget important questions.

I do hope that you find out more about what you are all up against shortly.

Do please let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Thank you so much for reply it makes so much sense.

she’s definitely up for quality of life over quantity and I understand that at 72. She’s seen us all grow up, have our families and lead our own lives.

i think for us looking in we imagine a long and painful draw out passing with metastatic secondaries (which she very likely already has, given how long she’s had the lump)

ive spent another day at the hospital and still no dr. They thought she’d been discharged and would be arranging a date to be seen in clinic! The nurses chased again, but still no sign of him when I had to leave.

looks like it will be her appointment in clinic before we can get more answers.

I’m so sorry to hear about your mom, and now yourself, so how do you feel health wise ? Are you not taking any medication at all? My currently feels absolutely fine.

Finally an update on my mom - sat there all day yesterday and today and no dr came to see her. I got fed up of chasing so phoned his secretary when I got home. She rang him in theatre () and they’ve finally been to see her. She can come home in morning with anti b’s and district nurse going out to do the dressing on the ulceration. She’s being discussed next Wednesday with radiologist and oncologists etc - there’s talk of double mastectomy and removal of part of sternum (makes me think it’s spread to bones) which I think she would have, but still adamant in no chemo or radiotherapy. 
She’s got an appointment coming out to be seen in clinic about 16th April so that’s when we will know the full picture xx

Hi Nitnatc,

I am glad to hear that you phoned your mom's consultant's secretary and that he has finally gone to see her. Having had a double mastectomy myself 8 years ago, I can honestly say that it was much easier to get through than I expected.

If things are pretty advanced the doctors sometimes prescribe chemo to 'hold' things for a while. This can give the patient a little longer time, but it can be a case of extending life with little or no quality. This can be heartbreaking to experience and, I wouldn't wish it on myown worst enemy!

It does sound as if it may have spread to her bones, when there is talk of removing part of her sternum. Are you or someone in the family going to attend her appointment on 16th April? You will have a better chance to ask further questions if you do. It is a well accepted fact that you only remember a small percentage of the conversation with the consultant, so it is always helpful for the patient to have somebody with them at all appointmnts.

You will find it helpful to write down any questions you may have in advance. This ensures that you don't forget to ask pertinent questions. I do sincerely hope that you get some answers soon.

Please let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Thank you both for taking the time to reply and to share your own experiences. Either myself or my sister (but hopefully both of us) will be going along to the appointment, as she’s not been the best relating any of this information back to us and naturally she needs someone there to support her and to ask questions and digest what they’re saying. Obviously myself and my sister will have questions too about our own risks and needs for maybe more regular screening. Luckily my sister had a mammogram last year as had turned 50 and I had one just a week ago for a lump I found (which luckily was just normal breast tissue) so that’s reassuring for us both right now.

i think the thing we can’t grasp and it’s a good thing, but she has and still feels so normal and well. Am I right to understand that you don’t generally feel unwell with this?

thanks again so much and I will keep you posted XX