Recently Diagnosed and Frightened!

Hi Rachel,

It's terrifying to get the sort of news you've got. There are so many unanswered questions and the mind will often fill in the blanks with 'what ifs', as my wife and I came to call them. Try if you can to focus on what you do know and start to prepare yourself.

If it helps, my wife's tumour was a grade 3 (aggressive) stage 3 (spread to lymph nodes). She also had chemo before surgery. The chemo completely destroyed the cancer, leaving only the 'beds'. The tumour measured 49mm. She's 45, so relatively young, but a bit older than you.

At this point, lacking the crucial information, the most logical course of action is to stop yourself from trying to fill in the blanks as it will just wear you out, make you more afraid and not actually get you anywhere. Trust me on that - my wife and I were guilty of the same thought processes at the beginning. We've learned to keep things on an even keel through shear necessity.

We're now a year down the line, following chemo, surgery, radiotherapy and all the bells and whistles follow-up treatment. But as best we can tell the margins were all good so we're taking the next step in our lives.

In short, at the beginning my wife was certain she was handed a death sentence, yet here we are planning for the future....albeit in much smaller chunks.

What I'm trying to convey (quite badly, I suspect) is, if you can, try to put your mind in a neutral state. Saying 'it's all going to be fine' is just as factually incorrect as saying 'it's all going to be terrible'. You simply don't know, so there's little to be gained putting yourself through fear and misery. If it turns out to be fine, you've put yourself through the wringer for nothing. If it's not good news, you'll go through it twice.

You'll need to prepare yourself for chemo and surgery. Start to reach out to any support network you may have - particularly child care and transportation. If you don't have one, start to build one. For you *and* your munchin. Travel to and from the hospital is obviously essential. You'll need someone to drive you back - certainly on the first day of chemo. After that it will depend how you react to the treatment. I'd focus on the first treatment first - keep the mastectomy in the back of your mind as it's potentially months away. Certainly quite a few weeks.

I don't know if you've told your son yet, but as parents with two older sons, we decided (on the day of diagnosis) to discuss it with them both - with open honesty. We thought it best they hear it from us and ensure they knew they could ask any questions. If we didn't know the answers, we'd find out for them. Obviously how you deal with your son is entirely down to you but I figured it might help to hear of our approach. There are several resources online that provide guidance on that front. Jen and I did it together - well, I did most of the talking because Jen was in utter shock, so it might be worth doing it with a trusted friend or family member if communication is likely to be an issue for you.

What you have in front of you is a marathon. Like any marathon, you can prepare for it. That's not to say it will be easy, because it won't be, but it may not be as bad as you're currently thinking. If you can start on the practicalities and deal with each thing that's in front of you, step by step, you'll potentially find the journey more tolerable, and it'll help keep your mind from wandering into dark corners.

Sorry, I've tried to cram a lot into a small space. I hope some of it is of use to you.

Do you know when they'll find out the grade? Similarly, when the MRI results will be known?

Wishing you all the very best.

Hi

I have a book called 'mummy's lump' which I read to my then 6 and 8 year old which was very good. I am happy to send it to you if you pm your address.

Xx

Hi Onetoomanybiscuits,

Thank you so much for sharing your experience - it is really reassuring to hear that your wife responded so well to the chemo.

I was having a real panic when I posted yesterday, but I’m feeling much brighter and calmer today, and have put some steps in place to start some counselling to help me cope better with the anxiety.

I’m not yet sure of the grade of the tumor (I think I was at full capacity for information at my last appointment!) I’ll ask about that next time. I assume it’s fairly aggressive as it’s grown very quickly over the last few weeks.

I’ll have the MRI results from the check on my liver this Thursday, and I know the outcome of this could determine the type of chemo I have. I then meet with the Oncologist on the 2nd May to discuss the schedule.

I really appreciate your words of wisdom having gone through this with your wife - and I’ll do my best to stop filling in the blanks for myself.

I’m lucky in that I have a great support network for transport and childcare - so feeling confident about starting treatment.

Thank you again for your support - and best wishes to Jen also

That’s a really kind offer - thank you Haysie, if you’re sure you don’t mind I can send my details x

No problem at all x

Hi again, Rachel,

I'm glad you're in a better place mentally. You probably already know this, but you're going to experience lots of highs and lows through this journey. You also probably know it's completely normal. Counseling is a great idea and definitely worth trying.

I suspect you already have a multi disciplinary team by now, so it's probably worth giving your breast care nurse or key worker a call to see if you can gather some more information regarding the tumour characteristics.

I remember the first few consultations as massive waves of information crashing over us and I'm only able to really articulate what happened retrospectively, having had more time to digest the information and 'live the dream', so to speak.

One other practicality that occurs to me is that you should try to get copies of everything if at all possible as it will help you when you're scratching around for information.

I'm a project manager, so I treated Jen's treatment a bit like a project - at least, on the administrative side. From the outset, following the first consult, I bought a ring binder and 50-odd polythene sleeves so we could collate and separate all the forms, leaflets, test results and contact details. That way, whenever we started going down the 'what if' rabbit hole, we could refer to the documents or call someone and get back on track. It's particularly useful for keeping on top of the treatment consent forms and myriad other pieces of paper that will be thrown at you throughout the journey.

Try to gather as much information as possible from the consultants, oncologists, nurses, specialists - everyone involved in your care and treatment basically - as it will be the information most pertinent to you and your treatment path/plan.

When everything seems to be chaotic and out of your control, there may be some comfort to be found in the facts and knowing you have a handle on your treatment because it's all filed neatly and easy to access. At least, there was for us. Jen takes the folder to every appointment - almost as a totem at this point because we know so much of it by rote. But I guess that's because it's always been there to refer to, as a foundation to the knowledge we needed to get through this.

I'm trying to put myself back to the beginning of the process in the hopes it's reasonably close to how other people are experiencing things, so I hope this doesn't come across as too preachy. 

I also sincerely hope the test results are in your favour and the above is of some use to you.

Dom.

Hi Rachel.

Sorry to find you here but here is a great place for knowledge, friendship, somewhere to vent or ask questions.

Your description of your journey so far sounds like it could have been written by me! My lump also appeared quickly and big, followed by scans and suspect lesions.  My advice would be to try to put it away until you have all the information.  I have learnt over the past year that I have had to adapt and plans change as things develop.  

I was told initially it would be chemo, mastectomy and then RT, but at my meeting once they had my full diagnosis that changed and a year down the line surgery is not something they are discussing.  Sorry I'm losing my thread... What I'm trying to say in a long winded way is there are lots of different types of treatment and journeys this could take you so if you remain open to options and change it makes it a lot easier to deal with.

They need to get the whole picture to be able to work out the best plan for you  xxx but whatever happens, make the most of every day.  Find something every day that makes you smile, fill your time with fun and laughter and create many amazing memories with your son.  Not because you have cancer but because you can.

Hi Rachel, 

Firstly, so sorry for your diagnosis, however we are all here to help and there is usually someone who will have or will have been in a similar position, when you find out more about your type of cancer.

My lump was large too,  6cms + 1.8cms + 1.5cms according to Drs letter. Hormone driven Her 2 negative Er and Pr Positive.  I had mastectomy first as my surgeon had a slot 5 days after my appointment so we decided to just do it then instead of waiting. Have sentinel nodes removed as cancer had spread, decided on lymph nodes clearance so had that done 3 weeks later in total 7/21 were affected.

I too was really worried about my Liver, as have family history of this. The waiting was the worse, my  house had never been as clean, lo. I had chest and abdominal ct scans as well as bone and heart, I was lucky all were clear. 

Ive just finished my last chemo yesterday, so any info about that ask me it’s no problem. 

Im keeping anything crossed for you, if you want to chat you can send me a private message by sending me a friends request.

Gentle Hugs Tina x

Hi all

Thank you so much for the responses - it is really comforting to know that there are others going through or having gone through a similar experience, and while I wish that this wasn't happening to any of us, I am really grateful for the support of this community.

An update on my diagnosis: So far the facts that I know are that I have a 5 x 6 cm malignant tumor in my breast, and that the cancer has spread to multiple lymph nodes in my underarm. CT and MRI scans have shown something suspicious on my liver and I am currently awaiting a biopsy to confirm whether or not this is a secondary cancer.
The tumor in my breast is Grade 3, and my consultant has shared that this "could be" an inflammatory breast cancer due to the changes seen in my skin / nipple (a darker patch has appeared on the areaola which is blistered / inflamed, the skin around the nipple is puckered like orange peel, and the nipple is flattened). The cancer is Er / Pr negative, and I am awaiting HER2 results.
My consultant feels that due to my age, and that the breast tumor has grown quite rapidly, I should respond well to chemo, which is encouraging. Should there be a secondary cancer in the liver, surgery could be an option here following the chemo. The plan remains to have a mastectomy after chemo - my consultant says this will be necessary as the breast cannot be saved due to the inflammation.

While I'm feeling calm and prepared in regards to both chemo and surgery, I'm pretty anxious at the prospect of having a secondary / stage 4 cancer and what this means for my outlook - do any of you have any experience of this or any words of wisdom to share?

I'm learning to take one step at a time, and I'm trying really hard to not focus too much on the "what ifs" as advised by Onetoomanybiscuits I'm having a real mix of good days and bad days,as I try my best to come to terms with this.

Thank you again for your support!

Rachel x

Hi Rachel,

I’m sorry I don’t have any advice or experience of this and I know it’s so easy to say but I would wait for the results first, you have enough to think about anyway.

Worse thing I did was worry about this myself, it didn’t do me any good at all and you can drive yourself crazy! 

Wishing you all the very best, we are all here for you.

Hugs Tina x