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New diagnosis

33 REPLIES 33
MarionEliz
Member

Re: New diagnosis

Hi Gilly,
My daughter works in the Nuclear Medicine dept in Ninewells (where I am going) so she has given me all the knowledge about Herceptin and what to expect. I finally got my date today - admitted next Thursday and Surgery Friday 12th. I'm expecting the worst then I will hopefully be pleasantly surprised. I have some projects I want doing as well as a 2 ply baby shawl I haven't finished. Bedroom curtains to be made .. List is endless.... Cupboards and drawers too!
I've gone through the cookery books, and some of the recipes are amazing, but to be honest I have no appetite at the moment and living on my nerves. I KNOW it's not healthy but I am having amazing mood swings from really positive to doom and gloom in the blink of an eye. I feel almost menopausal again so next week can't come soon enough. This MUST be the worst part of the whole process. How are you doing Gilly? You are really supportive to the ladies on here and I've read a lot of your tireless support and I thank you from us all.
Regards
Marion
Butterfly318
Member

Re: New diagnosis

Marion

 

Keeping my fingers crossed for a date soon.... as you say you will know more following surgery.   Following my surgery i did lots of soft furnishings and decorated the bedrooms............ just to keep busy really.....  also cleaned out cupboards and drawers.  House has never been so tidy.

 

Great news on the eating front.......It's funny how you do get used to eating that amount of veg.  The Nourish book had a great spicy cauliflower soup which is 2 veg.....also i make a shepherds pie (loads of onion and grated carrot in the meat and use sweet potato / swede / turnip for the topping or mashed cauliflower  (they are sometimes quite cheap on the organic farmers market).

 

I really struggle with but am trying to use more lentils / chick peas etc

 

Take Care Marion.  Hoping for a speedy appointment.  Great that you know in advance the level of routine monitoring with the Herceptin.   Take Care   Gilly x  

MarionEliz
Member

Re: New diagnosis

Hi Gilly,
Remembering my last call with the cancer nurse she said one of my hormone readings was an 8 and the other was nil. When she was speaking about the HER2 positive she said it was good that I was positive in the hormone dept ( perhaps for the anti hormone therapy?) been reading up on Herceptin and my daughter is a nuclear medicine technician has explained the heart scans every 3/4 applications. I still have no date for surgery and sit by the phone. It's only 2 weeks since my diagnosis and I can't believe it! Seems that was another life ago. In the meantime got those healthy eating plans book. Basically it's colours of the rainbow eating with all blue and red berries, fish and chicken. I was pretty lax at even managing my 5-a-day now I'm aiming for 7. Knowledge empowers you but sometimes too much becomes disheartening. Until my surgery and the Tumour removed, my lymph nodes explored I am in limbo only knowing half the story. Maybe get that call today - fingers crossed xxx
Butterfly318
Member

Re: New diagnosis

Afternoon Marion

 

Just catching up with how you are doing.  In terms of the trial it is likely that it would have been for Hormone receptive BC excluding Her2+ so you will still receive all the necessary treatment just not within a trial.  There are hundreds of trials ongoing at any one time.  (I am a Psychiatric Nurse so research is something i have a huge interest in). 

As everybody is saying you need to get your sugery done and then you can plan any further treatment. 

 

My BC was ER+8/8 and PR+8/8 (which just means the highest level of hormone receptors) but HER2neg.  The HER2 protein receptors are analysed in only a few units in the UK (not sure why) so the results for that tend to come independantly.  

 

Keep posting Marion and let us know when you go for your surgery.

 

Busyanne,  glad you are having an assessment at work.  When i returned to work after treatment Occupational Health recommended an assessment which was great, the guy altered my chair, computer set up / height etc and was really clear i must contact him as much as i need and he will keep coming back and doing the same, i work in a busy environment where people often invade your space / chair etc.  Just currently off work following reconstruction so no doubt i will call him back when i return. 

 

Take Care   Gilly x

 

 

busyanne
Member

Re: New diagnosis

MarionEliz, Herceptin is the drug for Her2 and if necessary there are others which can be accessed.  I have just finished a full year of Herceptin and feel fine although I must admit I do get neck and shoulder stiffness.  I think this is probably more to do with my job as I use a computer most days and tend to sit in an uncomfortable position.  I am being assessed tomorrow by my emloyers.  BC is very scary but I have been told by my GP if there is a receptor ie hormone or her2 then there is effective treatments.  You will be okay and from my own experience well looked after.  Good luck and try not to worry too much you will get through it.

Regards Anne

mary32
Member

Re: New diagnosis

Hi Marion

 

It's true, there is a huge relief once surgery is done, I remember it well, although the morphine certainly helped! 

 

Hope you hear soon about your surgery date.

 

Mary

Angie55
Member

Re: New diagnosis

Hi Marion
Yes my surgery was January this year and it does seem a long time ago. I do still get wobbly days when my brain goes into overdrive but I think this is only natural. Just try and take a day at a time I know it's not easy. We all want to get all the treatment completed asap. It is the waiting that is the worse thing ever. I started chasing things up as this is the only way you get anything done. Hope your appointment comes soon for your surgery. Take Care
Angie. X
MarionEliz
Member

Re: New diagnosis

Hi Angie,
Thanks for your thoughts..
My appointment was cancelled today because it was for the drug trials which I can't take part because Of my HER2 positive diagnosis. Just waiting for my surgery date now - sure you remember that feeling. Surgery is the easy past isn't it?
Regards
Marion
Angie55
Member

Re: New diagnosis

Hi Marion

 

I will be thinking about you today lets hope that you get the news to start your treatment. Let us all know how you get on.

 

Take Care

Angie. X

MarionEliz
Member

Re: New diagnosis

I am keeping busy as I can, cutting out stuff in my diet not necessary and increased my water intake. Should be doing all this anyway. I've not got a date yet because I had my name down for drug trials for hormone drugs - but that's blown out the water now with HER2+ Have an appointment tomo so maybe have a better idea then.
Regards
Marion
mary32
Member

Re: New diagnosis

Hi Marion

 

I would recommend as much exercise as you can. I really feel that it helped me post op and during radiotherapy. I never got the post rads fatigue either that people talk about. Sure, I was tired but I wouldn't have described it as fatigue. 

 

When is your op?

 

Mary

MarionEliz
Member

Re: New diagnosis

Hi Gilly, it's this waiting around that's getting to me more than anything. Saw the plastic surgeon today and told a few weeks delay. Also got a call telling me it's HER2+ which is an aggressive cancer. Looked it up and it's something I have never heard of before. It's an intravenous treatment (herceptin) given every 3 weeks along with the other treatments they decide I have to have. Was disturbed to hear today that I will be put on the 'waiting list' for radiotherapy...
I have 2 cocker spaniels and also inherited my daughter's Dachshund so it's an odd mix. I live in a lovely village called Blairgowrie - moved here least year from the frozen North of Aberdeen. Not sure if I'd walk as much if I didn't have the dogs. Doing 2 hour (4 miles) when weather permits, which just now is daily. I just love swimming so going to go back to that after this is over.
Reading some posts doesn't made me feel so isolated and sometimes I feel blessed that I have no other ailments like some of the ladies on here. Feel quite humbled by it actually. Some are bringing up young children ..
Well done with the 12 lengths - you'll be surprised how quickly your swimming stamina increases. Right now I just was a duvet to hide under.
Regards
Marion
Butterfly318
Member

Re: New diagnosis

Afternoon Marion

 

Walking with the dogs is great. I don't have a dog but my Daughter in Law's family have two and taking them for walks when i was off work last year was really helpful.  We live very near a large country park which i really do appreciate.  I guess how soon you'll get back into that will depend on your treatment.

 

Hope the hospital wasn't too bad today and you're a bit nearer having a plan for treatment and a bit more information....

 

I managed 1/2 hr about 12 lengths swimming and 1/2hr in bubble tub which was great.  Will keep an eye on fluid / inflammation tho'.

 

Take Care   Gilly x

MarionEliz
Member

Re: New diagnosis

Hi Gilly,
You're an inspiration! I walk my dogs 4 miles a day (weather permitting) at the moment and I was wondering how soon I could get back into a normal routine. I used to be a member of a gym and swam 3 times weekly, but moved out to the sticks and the nearest gym is a 40 mile round trip. (Hate the gym - just used the pool) There is a municipal pool I could be using so there is no reason I can't go back. I saw the Maggie Centre on my way to Ninewells (Dundee) For my tests. It was my first visit to the hospital and I wondered what it was. Will certainly go have a look tomo if I can. Parking at hospitals here are the worst. Shockingly bad. Barriers with one in and one out system which at mid afternoon is all but impossible for out-patients and visitors alike. Not sure if it's the same all over.
Hope your inflammation isn't too bad today but not sure if swimming on Tuesday a good idea. You are very upbeat and positive and it's great. Going to start a daily diary as some suggested and think about my diet and exercise pre/post ops. Because we have very little control over the actual cancer we DO have control over how we handle it.
Regards
Marion
Whitfield
Member

Re: New diagnosis

I'm 55 and like you are new to BC and have more scan next week. I'm grade 3, triple negative with node involvement. I have found the ladies on this web site so encouraging and full of good advice. Unfortunately you are in the waiting game like me but all I would say is keep posting asking questions as this helps.

Good luck with your treatment.
Butterfly318
Member

Re: New diagnosis

Evening Marion

 

I am four weeks on Monday from my surgery and healing seems to be doing ok.  Have small area on implant side that is red, inflammed rather than infected, but i am going to try swimming maybe just 20mins or so on Tuesday this week.  I continued my walking from being discharged 1/2 - 3/4 hr but have built back up to 1.1/2 - 2hrs each day now.

 

The main thing will be the risk of infection from the water but i have got Octenisan (skin wash used in MRSA treatment) so will make sure i clean the skin carefully and stop swimming if i have any concerns.

 

I think up in Scotland you have Maggie's Centres, not sure if there is one near you.  I believe they are very supportive.

 

Keep posting Marion and let us know how your treatment is going.  Take Care   Gilly x

MarionEliz
Member

Re: New diagnosis

You sound as if you have really taken it all on board and taking decisive action. I will have a look for that book on Amazon. I live in Perthshire so not sure if there are cooking classes as such are around here, but definitely something I want to do. I am in good health too and never been over weight, but coming though the seventies the only slimming diet I learned was 'starvation diet' until my weight dropped. Basically the caffeine, saccharin and nicotine diet. Not good recipe for bone density. Luckily I kicked the smoking habit but also know I need to eat properly instead of skipping meals and think more of what I need to eat. Gives me something to focus on. How soon after your reconstruction will you be able to go swimming and walking?. Looking at nutrition and working out a fitness route certain focuses you firmly in the future and I'm following your lead
Regards
Marion
Butterfly318
Member

Re: New diagnosis

Hi there Marion.

 

On the diet and nutrition front my OH and I went to Penny Brohn for an introductory course.  He really is a  roast dinner and fish and chips guy, healthy but traditional so i was amazed when he said he would come with me.  It really was three days where he was also looked after and we had the opportunity to take stock and discuss things that we might not have done at home on our own.....as well as look at changes to diet.

 

I bought their Nourish book which i have also since purchased on Amazon for other people (who have asked for a copy) and this gives some really helpful advice that seems to make a lot of sense plus recipes.

 

I'm not sure if i would have had the energy for this during my treatment but have since found it gives me a real focus and some control.  Also doing much more walking / swimming. 

 

OH will eat anything i cook except lentils and chick peas but he has a good understanding of my food choices and rationale behind them.  I am going back later in September for a four day Approach course which i am realy looking forward to.

 

Take Care.  Gilly x

 

MarionEliz
Member

Re: New diagnosis

Hi Mary,
I was just flabbergasted to read your partner go misdiagnosed with lung cancer...bloody hell... On the plus side it was wrong - but - a whole lot of unnecessary stress and then you get diagnosed with BC. There are a lot of positives going on there. My friend said to me yesterday that I have been so luckily in life lately, and should take this as another 'lucky' that it was found early and I am in good hands. The power of positive thinking huh? She's right and I'm using that mind set from now on. You too are 'lucky' - there was no lung cancer, your getting married to the man of your dreams and you caught your BC in time
Marion x
MarionEliz
Member

Re: New diagnosis

Hi there butterfly318 - love to hear when people actually get marriage right - congrats on 30 years! Think this whole cancer thing is harder on them than us. We are IN it, begin to understand it, deal with it. While they feel on the side lines helpless. If roles were reversed and he had cancer I would be a mess. Cancer nurse called me yesterday and very helpful. Interesting to hear you got reconstructive later - I am seeing both surgeons (plastic surgeon and cancer surgeon) for them to liaison and do surgery and reconstruction at the same time - probably 2 weeks. I've decided I need to change my life style and improve my diet into my winter years. I am not over weight, just a faddy eater with very little nutrients taken on board. Any one recommend literature on this? Suddenly being brought up short like this has made me re evaluate my whole life and what I want from it.
Marion x
Butterfly318
Member

Re: New diagnosis

Morning to you lovely ladies, i reckon you need to start a 'New Man in our lives Club'.

 

Really pleased you all have these lovely partners,  it certainly helps.  In terms of the guilt you feel, i've been married for almost 30 years to a lovely man who has been great over the last two years, an absolute rock, but i have also experienced a dreadful guilt at him having to support me, we had to cancel two lovely holidays and still can't really plan anything as i've just had my reconstruction.  I've always been the strong one (or so i thought) and fortunately neither of us has suffered any significant health problems prior to this.

 

i was diagnosed in October 2012 had Chemo, surgery Radiotherapy and recently reconstruction.  

 

Wishing you ladies all the best for your treatment and especially celebrations / nuptuals.

 

Please keep posting to let us know how your treatment is going.

 

Take Care  Gilly  x   

Angie55
Member

Re: New diagnosis

Hi Mary

 

I had planned my wedding for Sept 2014 before my diagnosis. This was due to the Gp thinking my partner had lung cancer in October 2013, but they had got it wrong as he was clear. I think have the Wedding to look forward kept me going. I now believe life is to short and we do not know what is round the corner so for me live every moment.

 

Hope all goes well for your Wedding plans next year.

 

Take Care

Angie. X

MarionEliz
Member

Re: New diagnosis

Hi Mary,
Thanks for that. Think I have gone through every emotion as you probably have. The word 'cancer' rings the doom bell doesn't it? I expect the recovery period must bring its own trials and tribulations. I knew not a single thing about cancer but it's a quick study and no two people are the same I am learning. I was given a consent form to try a new experimental drug to be taken 2 weeks before surgery and I'm not really sure about that either. I know it's aimed at helping future cases but at the moment I feel over loaded with information. Sure it will become clearer when I get to grips with it and used to the idea. Just don't like the waiver I have to sign - it actually says ' ... If you are harmed by taking part in the study you may have grounds for legal action, but pay for it yourself' 'ain't that a shocker! Reel people in with that line! Lol ( some one out there knows more on this P13K along with anastrozole 2 weeks before surgery?)
Regards
Marion
mary32
Member

Re: New diagnosis

Hi Marion and Angus

 

I just wanted to say hi and snap as I also have a new partner and am in my fifties. I also experienced great guilt when I was dx with cancer as felt it was terribly unfair for him to have to deal with. But of course, he has dealt with it brilliantly and I wouldn't have coped half so well without him. We haven't yet got married, hoping to sort that one out next year! 

 

I hope your surgery is rescheduled soon Marion.

 

Take care

 

Mary

Angie55
Member

Re: New diagnosis

Hi Marion
Sorry to hear your op has been cancelled. I didn't find my lump it came up on my routine mammogram. The surgeon couldn't feel it so what chance have we got. Yes it is lovely getting a second chance at marriage. Please keep posting I will be very interested in how you are doing.
Take Care
Angie. X
MarionEliz
Member

Re: New diagnosis

Just got word that my operation for next week is cancelled - my doctor is off and has to liaison with plastic surgeon so probably a week or so delay. Not liking that in the least .. Just want it over with. Taken the whole 'light duties' on board and it's some forward planning to keep my mind occupied.
Marion x
MarionEliz
Member

Re: New diagnosis

Hi June - I have ordered a copy of that publication and thanks for being there. Sure in the next wee while questions will keep cropping up. The consultations do go past in a blur and 'deer in headlights' springs to mind.
Marion
MarionEliz
Member

Re: New diagnosis

I found my lump my accident. Never once have I ever examined myself..shame on me...I spent 4 years in total breast feeding 3 babies and truly believed I was immuned. (Think that was the hype back in the day) My tumour is 14mm and like yours Angie - grade3. Seems I'm lucky to be a 'dd' for reconstructive surgery including a reduction in the other breast. It's great getting a second chance at marriage at our age and probably like me you have had feelings of guilt foisting this on a new husband. One of the many emotions I have gone through recently. As for googling - you're right! Scariest thing ever! I wish you absolute happiness and a great wedding day and I'm excited for you. Thanks for reaching out to me - not such a lonely place any more
Marion x
nicole-c
Member

Re: New diagnosis

Hi June
Thanks for the welcome, that's noted, and thanks for the invaluable work you do. It's great to have such an amazing amount of support around, in these testing times. Thank You for everything
air hugs nicole
June_BCC
Member

Re: New diagnosis

Hello Nicole-c

 

Welcome to the forums.

As well as the forums we also have a helpline where the staff can offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

 

With best wishes

June, moderator

nicole-c
Member

Re: New diagnosis

Hi marionEliz
Take one day at a time, You are in the hands of professionals, do the things you want to do now, keep the next few weeks clear after the operation, you will be on very light duties, so anything you do now is useful like shopping, housework, ironing because you are not meant to do much after the operation, as you have restricted movement after too. After the operation the surgeon and breast care nurse will be able to give you more detailed information about how it went. When you see the oncologist about 4 weeks later they will give you details on further treatment that may be beneficial to you. Take someone with you, as that chat can be a blur as well. One day at a time! All the best and air hugs nicole
Angie55
Member

Re: New diagnosis

Hi MarionEliz

 

I have just read your post and it seems similar to me. I am getting married next month in Gibraltar to a man who is my world. I am also 58 but getting married on my 59th birthday I was diagnosed in January 2014. I had a lumpectomy, mine was an agressive Grade 3, no spread to lymph nodes. It was 6mm but when they removed it after clear margins it was 13mm. I had 15 sessions of Radiotherapy and put on Anastrozole for 5 years. I think everyone is different and we all handle BC differently. I am sure you will be ok please let me know how it is all going. I will be thinking about you. Please keep using the forum and dont be tempted to google as it can be quite scary reading some of the articles out there. Just think I am going to fight this and you will find the strength. We all get the strength from somewhere.

 

Any question just ask someone will have the answer.

 

Take Care

Angie

June_BCC
Member

Re: New diagnosis

Hello MarionEliz

 

Welcome to the forums. I'm sorry to hear of your diagnosis, the first few weeks are always difficult when coming to terms with your diagnosis and treatment.
As well as the support you will receive on the forums you might find it helpful to order the BCC resources pack. It has been specifically designed for those newly diagnosed and contains information to help you understand your diagnosis, test results and the various treatments available. If you would like to order a copy just follow the link bellow:-
http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/resource-pack-primary-early...

 

You may also like to talk things through with one of the helpline staff, they are there to offer emotional support as well as provide information. The free phone number is 0808 800 6000 and lines are open 9-5 Monday to Friday and 10-2 Saturday.

 

Best wishes

June, moderator

MarionEliz
Member

New diagnosis

I feel like I am in a blur - last week got told I have breast cancer, core biopsies, results yesterday, surgeon to see on Monday (she's off this week) and in hospital Wednesday to have tumour removed. I don't have any knowledge, or know anyone that has had breast cancer ( looking online that seems amazing!) I really don't know how to react! Right now It as if I have a giant tarantula sitting on my chest and I'm not sure if it's bitten me badly or not. Only information I have is that it's a small tumour, appeared on the ultra sound but not on the core biopsy but it's the aggressive type. My family are all grown up (that's a laugh!) and I remarried last year at 58 to the type of man I always dreamed of ....