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Pre diagnosis

19 REPLIES 19
Mai7
Member

Re: Pre diagnosis

Hi Lotuslil,  Its amazing how we focus on something really simple like deodorant when faced with something big.  I used a roll on but waited a little while.  You can just use hygiene wipes until you're ready to use deodorant again.  I use Soft & Gentle 0% Aluminium.  Well done for breaking the news as its a big weight for you to carry alone.  It will get easier once the initial shock has sunk in.  Like Shi said, try and be a little bit selfish and put yourself first.  Everyone around you will find their own way of coping and you need to do the same.  It is sometimes quite difficult to let anyone in mentally when you are feeling completely lost yourself.  That's were this forum comes in handy!  Best wishes

Shi
Community Champion
Community Champion

Re: Pre diagnosis

Great you have a plan👍 Right shopping list for you ready for op is front opening pyjamas and a dressing gown with pockets and an inside tie bit, this will help with the bottle and drain if your surgeon gives you one. Also some sliders for the hospital too, hand cream and lip balm. M&S do those good front zip bras with the racer back, I’m a 36 but got a 40 because you will be a bit swollen after so buy a couple of sizes up, I kept on all the time after and slept in mine too. Also get a 2nd pair of surgical socks you will need to get them in while you wash the ones they will put in you at hospital. I’m glad you’ve been able to tell loved ones, it’s hard on them to, but you have to do everything your own way my darling, it’s your journey and do things for you, not to please people. 👭👭we are here with ❤️❤️❤️And keep 💪💪💪and 😁😁😁oh yes, get some alcohol wipes to sniff after you come round the anaesthetic could make you 🤮it did me then this wonderful nurse stuck one of those under my nose told me to sniff it and hey presto I wasn’t sick again. Also take some anosol in for botty too, the meds can block you up after op and you’ll have the famous backwards pine cone experience 🙄quite a few of us had that and the anosol was delightful. Hope some of this helps 💕💕Shi xx

Shi
Community Champion
Community Champion

Re: Pre diagnosis

Hi lotuslil

Lotuslil
Member

Re: Pre diagnosis

Hiya all

just an update on the latest appointment in that I am booked in for surgery on 29th March & then will know more. They are talking that radiotherapy is likely unless it has spread to my lymph nodes which they do not believe it has.

 

random questions keep popping into my head such as deodorant after lymph node samples & post surgery bras - bizarre!! 

 

Marks & Spencer do post surgery bras !! But what is the deal with deodorant?

 

parents now know which was really tough   It at least it is out in the open

Shi
Community Champion
Community Champion

Re: Pre diagnosis

lotuslil, hope you got a plan in place when you saw consultant 😘😘we are here if you need us as is the bcc option of someone like me that you can contact, see the main page. Sending you 💪💪💪❤️❤️❤️💕💕💕Shi xx

Lotuslil
Member

Re: Pre diagnosis

Thank you very much - am getting slightly nervous ahead of the appointment but it is more anticipation than anxiety, as it will be another bit of definite info.

 

since the diagnosis I have not had any tears, and then a song came on the radio at work which made me cry - bizarre!!

Anniej
Community Champion

Re: Pre diagnosis

Just sending good thoughts that you get the treatment plan in place and then you can get cracking. Waiting is the pits, but once you've started treatment you can focus all your energies on that. Good luck. 🍀👍💐

Lotuslil
Member

Re: Pre diagnosis

Oh bless you all - it means a lot.

 

I had my MRI on Tuesday last week so at the clinical team meeting today they will go through the cases including mine ‘ decide the best treatment options and then I go again on Wednesday to find out.

 

the thing I am dreading istellubg my parents as it is only 16 months since my mum lost her brother to pancreatic cancer & in the same week my dad’s sister passed away with age.

 

But my brother knows & he will be there with me as my hubby is on shift & we have a 14 year old diabetic cat who rips the vet to shreds !!

Shi
Community Champion
Community Champion

Re: Pre diagnosis

Lotuslil just sending you some ❤️❤️And we are here when you want 👭👭💕💕💕Shi xx

Lotuslil
Member

Re: Pre diagnosis

Thank you so much. They believe it to be ductal but need the results of the MRI before we decide on the treatment options.

 

Am relatively ok with it at the moment and we have started telling people at work & close friends but we want to tell family face to face xx

Shi
Community Champion
Community Champion

Re: Pre diagnosis

Hi lotuslil, 😘😘sorry it’s been confirmed now 👭👭we’re here for you. Get a note book and get any questions down ready to ask and you can write answers down too, it’s a bit information overload to start with. Let us know if you are surgery or chemo first and we can 👭👭also the someone like me option on here if you want to talk to anyone can help you. Have they been able to advise which type of bc yet? They can’t always tell at biopsy stage, if you know there are ladies who will be able to 👭👭you if you need it 😘😘💕💕Shi xx

Lotuslil
Member

Re: Pre diagnosis

Hiya - just to let you know it is ductal BC - also had the MRI & will get the results & treatment path next wednesday. Am slightly more relaxed having a bit more info & will just wait & see what next week brings xx

Shi
Community Champion
Community Champion

Re: Pre diagnosis

Lotuslil 😘😘👭👭we are here if you need us ❤️❤️💕💕Shi xx

Lotuslil
Member

Re: Pre diagnosis

Thank you - it’s getting a bit squeaky bum time now xx

Anniej
Community Champion

Re: Pre diagnosis

Hi Lotuslil, hoping all goes well today , and thinking of you. 💐🍀

NJS
Member

Re: Pre diagnosis

Hey Lotuslil,

 

Sorry to hear you are on the start of this journey. As someone recently diagnosed with Paget’s and high grade DCIS I can relate to how you are feeling.

 

Its important to realise that when you hear the words cancer, there are lots of different levels to this. Just because you have it does not mean necessarily you have the worst type. Most likely you will come through this and be able to live a very long and happy life once you’ve kicked the crap out of it.

 

I’d advise you to only speak to the experts that know so the people at the breast clinic, by speaking to the GPs before my proper diagnosis it only made my fear and anxiety worse as they kept telling me they didn’t know. Biopsy results (pleasant test isn’t it?!) usually take a week and then from when you have your MRI it’s another week. You should then be given a treatment plan. Be prepared this could change as they understand more about what is going on, the results from any tissue pathology results are more accurate than any MRI/Ultra Sound and Mammograms. I’m now onto my 4th surgery (which I had yesterday and apart from the dressing would be none the wiser this had happened as I’m in no pain), honestly having breast conserving surgery really isn’t as bad as you think. For me it’s no worse than the biopsies. I’ve been home within 4hrs each time and hardly had any pain and no healing complications thankfully so far. 

 

Writing all your questions down, no matter how daft you think they are really helps. Being informed gives me confidence I’m in control of what’s happening. This might be something you aren’t ready for yet but I found listing all the things I was most scared of helped me as I could address them with my treatment team. Being confident in your treatment team is also important. My Consultant gets me and has exactly the right approach I need. If you aren’t happy, ask for someone else.

 

Telling people is tough, I liken it a bit to the politics of a wedding guest list only there is nothing to celebrate! This is personal to you and depends on what you think you need. Your parents will only want to support and love you. I probably have around 20 friends and family that know but as each surgery has failed so far, I have found it a little suffocating at times with people asking about the results and what’s happening. I felt like once I let people in on my not so happy news that I had a duty of care to keep them informed as they are lovely people who worry. I’ve only told my Husband and my best friend about my 4th surgery and to be honest am loving the silence it’s giving me as it’s what I need for now. Let the people know who can lift and support you up right now, no mood hovers or need to tell cousin Bob who lives in Australia who you only see every 10 years! Some of my family couldn’t understand I didn’t want to broadcast this so I had to be firm and coined the phrase, “My Tits, My Terms!” 

 

Be kind to yourself, know that what you feel or need will change one day to the next, there will be tears but also there will be smiles and laughter. Wear your clothes you save for best, burn those expensive candles on a Tuesday, eat that cake and drink that wine. It’s tough but you are tougher. You got this.

 

NJS x

Anniej
Community Champion

Re: Pre diagnosis

I will be thinking of you, and will look for your update Tuesday. Best of luck. 🍀💐👍

Lotuslil
Member

Re: Pre diagnosis

Thank you so much for the advice & info. Will update you when I have finished at the hospital on Tuesday.

 

i already have a folder with all my paperwork so far & have been & bought a note book to jot down anything I need to ask & remember.

 

thanks again xx

Anniej
Community Champion

Re: Pre diagnosis

LHi Lotuslil, I'm so sorry that you find yourself here, but really pleased you have found us early on. This is the place for informed, non judgmental advice. Everyone here has walked the walk, and so can talk the talk to help you along. My experience is not like yours, but perhaps you can relate it it. I was 70. when I found a lump in late January 2017. I saw my GP 20 minutes later (!) and was urgently referred to the one-stop- shop type clinic at my local hospital which I attended eight days later. After a series of tests just like yours I was told I had breast cancer. This happened in a space of three hours. I then revisited with my triage nurse and was introduced to my BC Macmillan nurse. She gave me a booklet with dates for my operation, and the names of both my consultant and surgeon. I was also given a couple of Macmillan publications to help understand what I was being told. Fortunately I had my hubby with me as four ears and two brains proved better than one. I downloaded the pamphlet from this site called 'Understanding your Pathology'. This helped me get questions ready to ask my consultant when I saw him. I understood about stage and grade, and had a better handle on all the different types of BC. In my case I was encouraged to keep my holiday plans, and although worried sick about it all I was distracted by sea and sunshine. Test results from biopsies need to go to whoever is now part of your Multi disciplinary team, and a plan of action is determined specifically for you. These MDT only meet weekly, so there is always a waiting game to play. I was advised to start a journal as a way to vent my feelings of anger and disbelief, but also questions needing to be answered. Once your plan is in place you will be very busy getting ready for whatever is planned. I would recommend you NOT to google , but instead download informative pamphlets from this site, and tap into the top tips thread. Don't get too far ahead until you know type, stage, grade and treatment - you'll just scare yourself! At the meeting with my consultant I was included in the final discussion re surgery. TMI for me! I took the decision to ask what he would suggest if I was his mum, and then went for that.  There was loads of paperwork to be read and signed, and my BC nurse was present throughout, and went over it again to make sure I understood the processes. I had a lumpectomy performed by a plastic surgeon and am extremely happy with the result. 

Phew...feels like a marathon, but hope this has helped. All the very best, and I hope your team is as supportive, respectful and professional as mine. A really great bunch of people who have made this hard journey as easy as possible for me. X

Lotuslil
Member

Pre diagnosis

Hi everyone 

 

I realised about 3 weeks ago that something was wrong as my left nipple was becoming inverted. Went to doctors same week & a week later (last Monday 28th Jan) I saw the consultant who arranged an early mammogram (I am currently 47), an ultrasound and a biopsy. I was told by the consultant that it is more likely to be breast  cancer than not, so I have an appointment on Tuesday 5th to get biopsy results, followed by an MRI to determine the extent.

 

i don’t think it has hit me yet as I have had few tears, and no “why me” moments. My biggest worry is how do I tell my parents who have recently lost a sibling through pancreatic cancer.

 

can anyone offer general advice & insight as to what will happen next & what timescales you have experienced 

 

thanking you all in advance