Mum with two teenagers

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I was diagnosed with triple negative, stage 2, cancer yesterday. Just finding my way through all the online info here and trying to stop crying! I am trying hard to push negative thoughts away, but it’s such a shock. I have two children a 17 year old girl and an 11 year old boy. They took the news much better than I thought. Have also told my parents and in-laws, but still need to tell so many other people - I thought I would rather get this lousy news out there, but it’s actually really hard. I am meeting my breat cancer team next week and starting all the preliminary tests. Will then have to decide on whether to have chemo or surgery first - anyone out there who was given this choice?

 

To make things just a little bit more complex, at least in the short term, we have a holiday boooked for the 12th Aug. My consultant thinks it might be a good idea to cancel this, not so much due to any medical concerns but because of the psychological impact this delay might have on me. I’m not sure. My son would be so disappointed and I feel that a bit of time away might be a good thing. So many choices and decisions to make.

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Hi GabyF,

 

It’s Dee from Breast Cancer Care. Sorry to hear about your diagnosis, it must be such a shock. I’m hoping you get some responses on here, but in the meantime if you would like to speak to a telephone volunteer who has had a triple negative diagnosis, we’d be happy to put you in touch. You can contact the Someone Like Me team on 0345 0771893.

 

Wishing you all the best,

Dee at Breast Cancer Care

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Hello GabyF,

Sorry to hear about your diagnosis. Glad that you have found your way to this site. Well if you have to be part of this club then this is a very good place to be. If you need to speak directly with someone, then you can ring the freephone helpline.

Yes - too right it is a shock. You have a good cry if it helps to release the stress and tension. It is up to you when and who you tell. You are just digesting things yourself. There is plenty of time for all that. We are all different. I only told people initially if I really had to. Didn’t even tell most of my family for nearly a year (the advantage of long distances!).

You have time to decide about the chemo first or not. Discuss it with the Oncologist and ask them what they consider to be the advantages and disadvantages for YOU personally.

I did not have triple negative breast cancer. Mine was triple positive with the lovely “aggressive” Her2. I was offered chemo first which I undertook. Chemo may be a crap ride but it can ve very effective on triple neg and Her2 tumours.

It was a bit of a roller coaster and at the end of chemo, I was tearing my hair out (not that there was tons there at the time!!) as surgery was delayed. So one thing to consider is how you will feel about the tumour being there for months whilst you have chemo. Also the exact size of the original tumour may never be truely ascertained with chemo first. Scans give a good indication but they can vary quite a bit.

A major advantage to having chemo first, in my opinion, is that you can ascertain whether the chemo is effective, e.g. by change in tumour size as they will do scans at intervals. Not sonething one can be sure of if chemo is afterwards. I had a complete pathological response, i. e. no active cancer found after chemo.

They may also be offering you chemo first to so that less extensive surgery will be required if the tumour shrinks i.e a lumpectomy rather than mastectomy. However, this can not always be guaranteed.

Regarding your holiday - I am sure it will be a disappointment for all if you cancel. But this is where you need to put yourself and your health first, whether emotional or physical, so allow yourself to be the first consideration.

I suppose it also depends how long the holiday is for. Eg. If it is for a week will it delay anything? Will it be good for you to get away before things start? Can you shorten the holiday? Will essential tests and appointments be delayed?

Take care Gaby. Wishing you all the best and try and take things one step at a time. I know it is easier said than done but it can feel so overwhelming at tge beginning. X ?

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Hello GabyF,
Yes, you don’t know how some aspects of your life will be affected and you may also change your perspective on other aspects. Don’t let this bleeping disease affect you making plans and goals. You can still have these. We all need things to look towards. Of course major plan at the moment is to look after number 1 so that you can be in the best place for you and your family.

Take things in your stride. Some days during treatment you may feel like doing zilch and during others you may feel just plain normal! Just see how things go. I am sure as a busy mum you have a list of tasks that you never have time for due to work or hobbies and skills you would like to try/learn. Just imagine Gaby F, the artist, unleashed!?

If it was me, I would not be making a major decision about my career at this stage. There is plenty of time for such things later. You are still digesting things and you do not know how you may feel or be affected. Remember also that you will be covered by the Disability Act. Personally, I would rather be looking into long term sickness policies of my employer if I didn’t know these already so I am clear about my rights and entitlements.

By the way, I am not sure what Support Services you have around you but you may have something like a Maggies Centre or similar nearby. It may be worth looking into when you have time or ask your BCN.

Best wishes to you and your family
x ?

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Dear GabyF,

 

Sorry to have to welcome you to the club but glad to see some sage forum advice is helping you out. 

 

I too am in a similar position to you. I was diagnosed with TNBC at the end of Nov last year after finding a lump at the beginning of the month. I have 2 sons, now 13 and just turned 11. I have tried to keep my boys in the loop as it were because I think trying to keep this from them would have roused their suspicions and possibly have them thinking things were worse than they really are.

 

Having said that, when I told my eldest he just replied with “I knew it was cancer” and seemed relatively matter of fact but he does tend to play his cards close to his chest anyway. My youngest just replied with “are you going to die?” to which I replied “ultimately, yes, but hopefully not from this cancer” which seemed to put things into perspective for him. Unfortunately at the same time we were affected by the terminal cancer dignosis of a friend and neighbour who sadly passed away in Jan only 3 months after diagnosis. This definitely made them more concerned but I managed (I think) to try and explain cancer as being on a “scale” and I was on the opposite end to our friend. 

 

Simultaneously we we were having some major building work done on the house. We had started to extend the kitchen the month before my diagnosis which ultimately led to us having no functioning kitchen for a while during the winter so I had to resort to coooking in the integral garage on plug-in appliances (cue mental note to self to only undertake building work during summer…). It also meant that knocking through into the extension took place 3 days after my 2nd chemo. 

 

Due to the time of year I did find myself stuck in limbo whilst I had further tests - breast MRI due to dense breasts and CT scan to check for secondaries. I didn’t know what was going to happen when and what kind of condition I would be in over Christmas.  Due to my age (42) and familial history of ovarian cancer, I was also referred to the genetic counselling service. At my first oncology appointment my oncologist discussed how to approach the cancer ie surgery first then chemo or vice versa. As per Chick1 she recommended neoadjuvant chemo to reduce the lump size, allow for monitoring of response to treatment by being able to measure tumour “shrinkage” and to allow time for the genetic counselling referral apppointment. I could see the sense in this approach and the oncologist told me she had several patients who had responded well to the regime of docetaxel and carboplatin every 3 weeks. This was the second week of December so we opted to start chemo after Christmas on 6th Jan because the oncologist didn’t think a slight delay in starting would matter and this did mean we could enjoy a relatively normal family Christmas. 

 

A repeat MRI after chemo number 3 showed the tumour to have shrunk by a third which was encouraging. My last chemo was 4th May and we then chose to delay surgery a little for a camping weekend at the end of May but the surgeon wasn’t concerned by this delay. 

 

Apologies, I’m starting to write a novel now! Anyway, long story short I had a wide local excision (or “lumpectomy”) and sentinel lymph node biopsy on 6th June. Fortunately the tumour had responded completely to the chemo and there was no sign of spread to the lymph nodes so I was stage 1. Unfortunately the gene test results returned 2 days after surgery and showed I have a brca2 gene mutation so higher chance of cancer recurrence and new cancers.  I opted to have a double mastectomy so am currently recovering from this surgery and starting to see some light at the end of the tunnel! 

 

I have to say that my employers have been really good and I have been on sick leave since January. I am a vet by trade so in a similar situation re infection risk etc as you. I also think this has helped me get my head around things a bit better, maybe because I think about how I would have investigated/myself as if I were a patient!

 

After all that rambling, I did feel better once I had a plan and knew what should be happening when. The strangest thing is that it all still seems really surreal, I was perfectly fit and well initially I just had a lump and it wasn’t until treatment started that I became unwell. 

 

Best of luck with your treatment and make the most of your breast care nurse, mine is lovely ? 

 

Please feel free to pick (what remains) of my brains if you have any questions you think I might be able to help with.

 

Take care of yourself xx

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Hello GabyF,

So glad that mcgee has shared her story with you as you have a number of things in common and as she says “pick her brains” if you need to.

If sharing your thoughts and worries here is helping you, then you “go on” as much as you want.

You come across as a really together person - even if you don’t feel like it at the moment. Hardly surprising that you are forgetting bits and bobs this week as your brain activity will be focussing on other matters! Anxiety and stress can express as chest pains. Pain is not usually an initial breast cancer symptom. But if it is really bothering you then I hope you will get it checked out to be on the safe side.

Your daughter sounds like a right star ?. Open, honest and age apt conversation can only be a good thing. It would be sad to think of your son and daughter worrying about you and not being able to express it.

I know Breast Cancer Care have a booklet you can download for free calked “Mummy’s Lump”. I have not seen it so not sure if it would be apt for your son. Support Centres like Maggies can also help/have resources available.

That is great if you find writing things down helps to declutter headspace, reduce anxiety and create some order. Me too - even if it is just a bleeding list.

I was fortunate to have 2 different Support Centres near me. I favoured Maggies as I found it less bureaucratic in that I could just walk in without having to sign in or give a reason for coming, did not have to register etc.

They organised lots of different classes and courses, had a library of imformation and support and a listening ear on tap when needed.

However, I used it more for coffee and reflection before or after some appointments as it was near the hospital. However, I really enjoyed going to the “Look Good Feel Better” event that was held there - what a goody bag ? and excellent make up tips.

By the way, it is very admirable that you are protective of your employer. But don’t sell yourself short due to feelings of loyalty. I am sure you have given them loyal service too. Employers have to plan for such events as sickness, and employees have to think about possible reduced income etc. and plan for that.

Hope your appointment goes well on Monday.
Take care Gaby x ?

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Dear Chick1 and Mcgee,

 

Thank you both so much for all the wise words and for taking the time to share your experiences with me. 

 

I usually love lists, Chick1, but somehow right now I can’t make any. I feel I’m in a bit of a vacuum. My life until now suddenly feels so far away and the future is completely unknown - I’m somewhere stuck in the middle.Hopefully my appoitnment with my BCN (getting the hang of the abbreviations!) will help. 

 

I was wondering, Mcgee, what effect your treatment had on your two boys: did they talk to their friends about it? Did their teachers notice anything? I will be informing both our schools, as I think it’s very important they know. My daughter is keen to tell her tutor herself and I will go with that for now. But my son is too young and will, I am sure, not tell anyone about this. He looks pensive and is not surprisingly struggling to put his thoughts and feelings in to words. It would be really useful to hear how your boys coped, if you’re happy to share this with me of course.

 

Funny you mentioned the kitchen extension - we had a loft conversion done just a couple of months ago and are still clearing up and moving stuff around. The kids’ bedrooms are a compete mess. At least some things don’t change! We also very sadly lost our family cat to kidney failure on Tuesday, the day before I was diagnosed. That really didn’t help! It’s been a truly terrible week.

 

I don’t think I’m very “together” at all at the moment, but I am trying. It’s so good to hear though, that both of you have come through this and that life does go on and can return to normal (more or less).

 

Thank you both.

 

Gx

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Dear Mcgee,

 

Thank you for sharing your thoughts on your boys with me. I suppose children are more resilliant than we sometimes give them credit for.

 

I have a lovely, supportive husband, who is just as shell-shocked as I am but is determined to be with me all the way. He’s coming to my first BCN appointment tomorrow and has told his employer that he will need to take additional days off at short notice. He is my rock and has had to put up with a lot of tears this week. I am very lucky to have him.

 

Like you, I am the one who has until now dealt with most of the daily routines around school, household etc. I think I am also the “emotional hub” of the family, which is why I am even more worried about the effect this b…dy illness will have on everyone here. However, I also know that my husband and children will give me the strength and support to get through this. I am very lucky also to have my parents fairly close by, as well as my aunt - they have all been so kind and have offered to help with hospital visits, cooking, washing, you name it. 

 

As you have done, I am trying to take my cue for discussions with the children from them. And like yours, I think mine are dealing with and processing all this very differently. My son is only just entering into the teenage years and I will need to make sure that I don’t attribute any mood-swings, outbursts or other problems to my cancer. Sometimes, this will I am sure just be a “teenage thing”. I am keen to be open about my treatment with both my children. They need to know what is happening and need to be able to ask questions; I cannot make this in to a secret - that would be unfair on them and put far too much additional pressure on me. Anyway, we have always tried to be honest with our children and the cancer must not change that. Of course, somethings will have to be explained in a age-appropriate way, and I will look in to the comic you mentioned. Maybe that will help.

 

Anyway, duty calls right now - have to put my son to bed! Tomorrow we’re off to the BCN and I hope to get a bit more info and lots of support from her.

 

Gx

 

 

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Dear Mcgee and Chick1,

 

I had my first meeting with my BCN yesterday. She was fantastic: kind, calm and very informative. She somehow managed to take the edge off my and my husband’s terror and we now both feel that we can deal with this. When she told me that my cancer is at an early stage and that they can treat it, I just burst into tears - it’s the best news I’ve had for some time! It was such a simple sentence, but it contained everything that I can at this point hope for. Of course I am well aware that other problems may show up in tests and that the treatment will be difficult, but for the first time in two weeks I feel I can breathe and think about my future.

 

Having an MRI and CT scan this week (these are given as standard here) and will also be referred for genetic testing. Will be having chemo, then surgery and radiotherapy - nice cocktail! But this will ensure that not only do I get rid of this cancer, but that it hopefully doesn’t come back. All in all I will have to have a year off work. In some ways that is the most challenging thing for me right now. I am so used to juggling kids, work, home, and am feeling slightly lost at the thought of not having all that lovely stress! I gues it will be replaced by others!

 

We’ve decided to go on our holiday as planned and have the go-ahead from my BCN. So I will probably log off from here for now and return to another part of this forum when I get back. A very big thank you to both of you for all your encouragement and support over the last week. It really has meant a lot to me. I hope that you both get through the remainder of your treatment successfully and are able to enjoy this lovely (hot) summer.

 

Gx

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Hello GabyF,
Just a quick reply before you “log off” so to speak. Absolutely brill that you had such a positive meeting and that you both felt reassurred. Also very glad that you and your family are going on your hols. Have the most wonderful time together. Will keep an eye out for any of your future posts and progress. Wishing you all the best with your treatment Gaby. X ?