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Help!

17 REPLIES 17
delly
Member

Re: Help!

Hi again New 11,

Glad things have now moved on with your Mums diagnosis. Sounds as though she's a lot of other tests to go through yet to have appropriate plan.
I didn't require chemo or radiotherapy 9 yrs ago, so I can't be of much help there, sorry. But I'm sure someone else can and will be.

If not on this particular thread, you would probably find it very helpful to post on another section under "Going through treatment" and post on the "Chemotherapy" thread. Chat with some of the lovely supportive ladies who are having or have had chemo.

Sending love and a hug to your Mum and you

Delly xxx 

 

New11
Member

Re: Help!

A big thanks to everyone that has replied!! Sorry I haven't been on for a while as everything has been hectic! My mum has went on to have more scans ant it turns out it's a 5cm tumour triple neg!!! Was really hoping for better news but the thing keeping me going is so far there's no sign of anything in the lymph nodes...she's had a biopsy and there not able to stage or grade at the moment but can't understand why as I thought that's what the biopsy is for?? All we know is it's now 5cm with 5 "moons' and triple neg!! She's been for a ct scan still waiting on results...still got another 2 scans for bones and heart! And a week today she's going for a minor op to check lymph nodes is this normal?? We have been told she will be going receiving 'standard" chemo for 6 month then op followed by radiopherepy... Now I understand triple neg doesn't respond to other treatments but isn't there a specific chemo as opposed to the "standard" chemo? Have also read there are some other treatments for triple neg such as carboplatin and bevacizumab is this correct? Going thru hell at the moment trying to collect as much info as I can...I know she may be in safe hands but just want to be sure she's getting the best treatment possible!! Thanks again for all the replies will be on here more often!
delly
Member

Re: Help!

Hi again New11

I'm hoping your Mum may have moved forwards with appointments,tests and results by now. Has she?? And more has been revealed from.

Pleeease keep us informed as to what's going on, and if poss, have your Mum contact us on this thread of the forum, or another. Can't tell you or her, how much it's helps to be in touch with others who've also been through it.

Please take care of yourself in all of this, as she's likely to need you to be as strong as possible to be able to lean on, however much she may not wish to admit it. Given a choice, most Mothers want to be there for their children, not visa versa. My Mum wished SHE was the one given the cancer diagnosis, not me. Bless her. Was scared stiff she would lose me before her, as it isn't such a natural "order" of events. I survived, which she was soooo glad about. However, she died a couple of years later. Awwww - do look after each other.

Loadsa love

Dellywelly xxx 

Bibi44
Member

Re: Help!

Hi New11 very sorry to hear your mum's news.  I was told thinks like your age, grade, size, lymph node involvement & the actual type of cells are just used to create a general picture of risk, depending on how that comes out, the type of treatment that would give your mum the best possible chance is decided.   Please remember that many women go on to live long & healthy lives after BC treatment, but we don't focus on them of course, we tend to dwell on the ones who don't.  Yes the treatment is not nice & we would all prefer not to be in this position, but we are & have to dig deep & find a way to get through it as well as we can.  A week or two either way really won't affect her outcome.  I would think you might find it useful to call the helpline & talk things through with one of the nurses there.  They are really wonderful.  We all understand the dreaded awfulness of waiting for results...it's so hard that it's just not in your control to speed it up at all.  Try & stay calm for your mum.  If you feel it really getting on top of you/you both, try to go for a walk & take some deep breaths.  It is perfectly normal to be very worried, find it hard to sleep & burst into tears the whole time to start with.  It's a huge shock & nothing can prepare you for it.  Sending you both huge cyber hugs & lots of love & luck.  xx

Moijan
Member

Re: Help!

duplicate!

Moijan
Member

Re: Help!

Hello New 11,

 

so sorry you have had such a lot of worry over recent months. I know that 'when will the other shoe drop' sensation.

 

I just want to add, I agree with all the advice below. Words/terminology like 'staging' can be so scary and make us so much more anxious. Once the treatment plan is in place, things will feel more manageable. I investigated the private route as my partner has bupa which covered me...I decided to stay with the NHS, so glad I did. The consultants are often working in both anyway. My initial prognosis wasnt ideal, but seems to have evened out now. I was diagnosed in 2001.

 

So glad you feel able to share with us....i always find theres a lot of support and good advice to be found amongst us all here on the forum.

hugs

 

Moijanxx

 

delly
Member

Re: Help!

Hi New 11

A warm and supportive Hello from me too.

Yes, by "moons", they mean small satellite tumours. With reference to these satellites, don't be frightened by the word "tumour". Not ALL tumours are cancerous, it's just the medical term for ANY kind of lump/growth whether they are benign (harmless non cancerous) or malignant (cancerous). Can't always tell which from the appearance and surface feel, or from scans. Biopsy samples are required for minute examination to give a definite or negative cancer diagnosis. All of which takes time. They may not be connected to the suspected main tumour/growth, but they could well be.

The lymph nodes, small lump like nodules, are situated in the underarm area - not the breast itself. But are connected to the breast tissue by small lymph vessels, similar to veins. We have them in various different parts of the body - throat, abdomen, chest, underarms, top of the thighs. The nodes are like filters, part of our bodies defence mechanism, full of disease attacking cells with the purpose of preventing disease spreading further around the body, and can become swollen when dealing with an attack. They are why, with colds, flu, sore throats etc.we can get sore swollen "glands" (larger forms of lymph nodes) in our neck. In the case of breast cancer, any cells that escape from a cancerous breast tumour, can travel along the lymph vessels and become lodged in these nodes.

There are different "types" of breast cancer cells and the type also comes into the grading. I don't know where you got the "grade two" from, but it sounds like someone's incorrectly jumping the gun, without specific diagnosis and you've "fixed" on it. But, as everyone else on here's said, it really IS too early, without biopsy results, for ANYone to speculate or KNOW what type it is.

I'm a ten year survivor following losing both my boobs at 45 and 46.

 

Your Mum's very lucky in having such a caring daughter, but don't to let your head runaway before you obtain more accurate results.

Truely sorry for the loss of your brother. A double whammy for you all to deal with. Hope results for your Mum are better than expected. They will be dealt with promptly.

My thoughts are with your Mum, you and your family lovey.

Delly xxx

 

Ps. Jobey - you're obviously a Gerard Butler fan. Made me chuckle x 

 

Bottyboo
Member

Re: Help!

Hi New11 I can also hear the panic in your messages but as the others have said it is impossible to predict grade/stage etc without removal. If the lymph nodes were seen to be clear on ultrasound the moons are likely to be smaller satellite tumours. None of us can know and neither can the experts. Just be sure if it is bc everything moves very quickly and efficiently.
I am so sorry to hear about your brother and understand it makes things doubly hard but we are all with you and have all felt this helplessness you are feeling. I know you won't believe it, none of us did, but it does get easier when treatment starts xx
PeggyCat
Community Champion

Re: Help!

Hi New11,

 

Possibly by "moons" the speciaists are referring to what was explained to me as "satellite" tumors. I had an invasive lobular of just under 4cm which had a couple of tiny satelite tumours next to it. This was not connected to lymph nodes so I think you should ignore the whole issue of staging based on what you know at this time. As everyone says, you won't get a full diagnosis until you have had a full biopsy of the tissue taken. 

 

I realise it's hard to feel any kind of positivity at the moment but if it helps, one year one from my diagnosis ( with a tumour and satellites), I am doing really well and feeling pretty damn good. Hang on in there and keep in touch with people here who will give you lots of support. 

 

xx

Jobey68
Member

Re: Help!

Absolutely Charys, I was told the same, there is no immediate hurry and a few weeks will make no difference, mine was tiny and they suspect only there a matter of months and could have been years before it became an issue And picked up either by me or a routine mammogram, that will hopefully give you some concept of how BC can develop xx 

Charys
Community Champion

Re: Help!

Just to add...the thing about BC in the earlier stages....is that it is very contained within the breast structure. It could be that those tumours in your Mum's breast have been there a long time, I know some women have been told that theirs could have been there for years until they were found. I said to my surgeon 'how long should I wait before surgery' and she said 'it won't make much difference if you leave it a month or so'. I can sense that you are very anxious about time-frames, and of course you want it sorted quickly, but don't panic too much about a few days here and there, a test taking a few days longer, though psychologically and emotionally painful Smiley Sadwon't make the outcome worse for your Mum. Well, that's what I was told anyway.

 

Charys x

 

 

Charys
Community Champion

Re: Help!

Hiyer,

 

I can almost 'hear' the fear and panic in your writing, and it is understandable as this is your beloved Mum who you just want the best for.

I think what Jobey says is spot on, we all get a bit hung up on trying to know grade, stage, etc. in advance.The trouble is that you simply can't know without further tests, thats the problem, they will know roughly the size of anomalies in the breast (but not entirely accurately until removal), they may have a general indication of changes in the lymph nodes from ultrasound too, and clearly in your Mum's case the radiographer is skilled enough and there is enough evidence to support it looking like a type of breast cancer. It sounds very encouraging if they can't find anything wrong with her lymph node area. The thing to hang on to, strongly, is the fact that whatever stage/grade there will be a treatment plan put in place, specific to your Mum's individual needs and for the majority of women nowadays that will be a very successful treatment plan. (I have heard the phrase 'moons' before and I was led to believe that this was smaller tumours in satellite position around the main one. I'm not medical though - disclaimer LOL.)

The grade of a tumour can even change from the time of first biopsy to the time of final removal and biopsy, as mine did, I went up from a grade 2 to grade 3. That isn't that the grade changed inside me, as such, but that the final removal and biopsy gives more full and accurate facts than the needle biopsy. So, you can see that trying to work out what it is now before the tests will just take you round in circles of worry.

 

It is a very painful, difficult and uncertain time, it is THE hardest time waiting for tests and results.....but it will get easier for you and your family once you know the facts and what the treatments are to be. I know you have experience of someone in the family being diagnosed and given weeks to live, but in my opinion it isn't really like that with bc. I had my mammogram and ultrasound 2 weeks after seeing the GP, then my biopsy results took another week to be returned.....then it was 3 weeks until surgery....you get the idea...

 

Charys x

Jobey68
Member

Re: Help!

I know its awful not knowing love but honestly you are not going to have the answers you want until your mum is actually diagnosed by a biopsy , this will give some idea of the type and grade it is, the stage cant be determined until after the lump is removed and nodes are checked, your mum may also have other scans to determine the size as a Mammogram and Ultrasound are not 100% accurate , just try and keep as calm as you can as your mum needs your support, get through these next few weeks and find out exactly what your dealing with, dont get too hung up on grade and stage as there will be great treatment no matter what Xx

New11
Member

Re: Help!

How long could it take to be diagnosed in which I mean stage grate etc? Simply by going with the size of tumour they found by scans =3.6cm that means is stage 2...and if they mean lymph nodes by there term "moons" then that takes it to stage 3? I'm just wondering how long it would take to find this information out as its killing me...she is breaking out in cold sores and is very run down...we also went to my aunts funeral today who died of cancer...was only diagnosed 6 weeks before she died...tried to talk my mum out of going but she was determined to go...no other family members know only close friends...they checked arm pit and found nothing. All they told us was there was a tumour at 3.6 cm with 5 surrounding "moons" was to shocked to ask anything else and now I'm trying to find out what this term means to no avail?? Can't find any info on it at all. Thanks again for your response x
Jobey68
Member

Re: Help!

Hiya, I went down the private route initially but could actually be treated sooner via NHS so stuck with them and have been very well looked after, biopsy results will take roughly the same amount of time regardless of which was you go, I know it's awful having all this uncertainty and you just want answers now but unfortunately things take time at this stage, a few weeks really will make no difference , does your mum have her clinic referal date yet? Getting a firm diagnosis is what you need right now so try not to let your mind run away with you too much as your can only speculate on what may or may not happen and it will drive you nuts!! Get some facts first then you will find things so much easier to deal with.

i don't know what they mean by moons but I'm sure when they did an ultrasound on your mum they would have checked under her armpit which is where they would be looking for swollen lymph nodes, did they mention this? I'm so sorry this has come after you have had such an awful time already with losing your brother, life can be very cruel but if mum is diagnosed then she will be well looked after and highly likely to go on and be well for many many years, treatment is good and I for one hope to be around for a long while yet! Xx Jo 

New11
Member

Re: Help!

Thanks so much for the reply! Any information at all is a great help! Until a few days days ago we knew nothing about cancer except it's a horrible horrible thing to have! But at this stage all we know it's cancer going by the opinion of the Doctor/nurse that done the scan but after reading about the size of tumour and the 5 surrounding "moons" I'm lead to believe this is stage 2b breast cancer. Now what is the 5 surrounding moons??(does this mean or could mean it's affected 5 lymph nodes?) hence the reason given the size of tumour and guessing the term "moons" refers to it affecting 5 lymph nodes? I know I'm asking a lot of questions and there has been no biopsy but I'm hoping someone in the "know" will pop along and maybe she'd some light as its horrible not knowing where we stand! Also would getting the biopsy done private speed up the whole process as now we know it's cancer by the scans it can still take upto 2 weeks on nhs for the biopsy then I'm guessing more time to stage and grade? Then more time for treatment? I'm doing everything I can as I know time is of the essence. Also I'm looking at diets, herbal remedies etc etc... We have had a terrible time lately after loosing my brother who was only 25 at the start of the year and couldn't bear anything else happening... Any tips/advice would be greatly appreciated. Thanks
Jobey68
Member

Re: Help!

Hi New, 

Im sorry you and your mum are having to face this, it's as you rightly say impossible to be certain what it is and what stage and grade without a biopsy, the grade refers to how abnormal the Cancer cells look and are 1, ,2 or 3 and staging depends on a few things like size of tumour and if there is any spread to nearby lymph nodes, none of this can be known for sure until the lump is removed and nodes are tested so it takes a few weeks to get a definite diagnosis, until your mum knows for sure she has breast cancer you are just speculating and scaring yourselves silly so try and keep as calm as possible and deal with things as they happen, there is plenty of support here for both you and your mum so please keep in touch Xx Jo 

New11
Member

Help!

Hello not sure if this is the right section but here goes.... My mother found a lump 4 days ago from writing this and went to her local gp the following day to which he is trying to fast track a scan and biopsy that will take upto 2 weeks. We decided to get a monogram and another scan ultrasound I think? That showed a 3.6 cm lump almost star like and 5 surrounding "moons" there words... Now I know we can't know fore "sure" without having a biopsy but there opinion was it was cancer. I have been reading a lot on grading and stages as such...I know no one can say for sure without proper testing but would I be right in thinking this is stage 2b breast cancer? Really hope to hear back soon as we are all absolutely shattered with this. Thanks