Was diagnosed with DCIS back at the end of august and had a WLE on sept 21st to remove the offending lump. Went back today for my follow-up and suprise, suprise, I have been upgraded to invasive ductal cancer, grade 3, ER+ - don’t know the HER status yet. The whole lump including DCIS is 18mm, and the invasive bit within that was 14mm. I don’t really know the significance of size vrs grade etc - but that is what I wrote down! Chemotherapy is a definate due to it being grade 3 though.
Am going back for a re-excision (margins for DCIS were not clear - but they said the invasive bit has all been removed) and sentinal lymph node biopsy in 3 weeks. Am also being referred to the fertility nurse. Am 33, been with my lovely partner 10 years, we don’t have any kids yet but I would have liked to.
My sister has stage 4 breast cancer that has spread to her bone. We have a strong family history of early onset breast cancer so may also end up at the genetic testing clinic. Even if kids may be a future option in a physical - I obviously have to think about the possibity of passing a gene mutation on… which no one would want to do. My dad also died of liver cancer last november and my sister have both been diagnosed with breast cancer since.
I really, really don’t like my life right now … but onwards and hopefully upwards I suppose.
Hi Brady
I am so sorry you feel all over the place with your diagnosis, and I am sure if you phone/book appt with your breast nurse you will get more information to help you understand what is actually going on. The clinics seem to give us as much info as we ask for, and wait for us to ask questions that indicate we want more specific information, rather than volunteering that info for us to think about at home. It took me 18 months to get the info I needed to understand the oncologist’s view about nip and tuck surgery after r/t, so you may have to be very very persistent about the ‘next step’. You are doing well if you write down everything they say at clinic appts - you can have a good think at home later, and that will bring up questions you need to ask next time at appts.
Perhaps you are ‘fortunate’ re: family history - this may reveal facts that will help you make a decision about babies and all that. As an adopted child, I have absolutely no idea of my family medical history, so in theory I could pass on all sorts of conditions to children.
Take care of yourself, and please believe that this is the worst time: new DX, new surgery, new treatment plan. Once it is all a bit more definate you may feel more in control.
all the best
grumpy
Thanks grumpy - the only thing I’m not really clear on is the significance of the size. It doesn’t really make any difference though - I am going to do whatever the surgeon / oncologist think is best. Maybe too much information is a bad thing.
I’m sorry it took you so long to get the answers you wanted. I do see what you are saying about the hereditary thing - it is better to know what you are dealing with. I am not sure if the fertilty referral is a bit futile though given my family history. Yes - it is good to know why I probably shouldn’t have children but that doesn’t make it any easier to swallow the facts.
I know it sounds really shallow but I really wish I had asked if I would get the option of cold cap with my chemotherapy. The thought of losing my hair is not a happy one.
Hi Brady
Sorry you find yourself here, you’re absolutely at the worst time at the moment in the waiting room, you will start to feel better once you have your treatment plan and things are moving forward. I had a 19 mm grade 2 tumour which was ER+, PR+ HER2-, I was told I was borderline for chemo but opted to throw everything at it and as much as chemo is not pleasant it’s certainly doable, the thought of it and the anxiety it creates is worse than the reality. As for using the cold cap, I decided I was definately going to use it, then completely swung the other way, it just wasn’t important anymore, also I wanted to ensure that the chemo worked everywhere and was paranoid that my brain might be left vulnerable if I used it. I’ve seen a few people use the cold cap, some with very good results, some with terrible results. The hair loss for me was traumatic but only for a couple of days, it’s surprising how quickly you adapt, I finished chemo in July and now have hair and it’s in lovely condition.
My oncologist didn’t really tell me too much which was fine with me, I prefer the head in the sand approach personally, but over time I found out more through my nurse who was lovely - not that my oncologist isn’t but who wants their own oncologist?
So sorry about your sister, take care and any questions, feel free to drop me a pm
x
Hi Brady-I can really relate to your worries. I’ve been given v inconsistent information about the nature of my tumour. I was initially told on ultrasound that it was 2.3 cm but my oncologist stated that it felt more like 6cm ( a 200 percent overestimate by ultrasound?!!) and she insisted that palpating lumps was the most accurate way of measuring the size. Other medics told me that I had scar tissue around the tumour-who knows eh?
I then had to have an MRI which found that at its widest estimate my tumour was 3cm . Even on my differing clinic letters there seems to be some lack of consistency.
I agree that information seems to come in dribs and drabs. Size is significant when it comes to staging but in total yours seems less than 2cm which is a positive thing.
In terms of chemo-its not too late to ask for cold cap. I have done one chemo with cold cap 4 weeks ago-I have a widening hairline but quite a lot of hair left. It may go on future cycles but its worth a go I think. Look at some of the chemo threads-they are so helpful and supportive. Ring your bcn or onc and ask if its possible
It sounds like you have had a really rough time recently-my way of dealing with this is just to try and put one foot in front of the other and carry on as normally as possible (even that can be hard).
Best of luck brady
Thankyou Chascat & Sukiem - am feeling so tearful today… and when I say tearful I mean sobbing into a pillow :o/
I don’t want to be pathetic about this but it has all just got too much. Didn’t get a lot of sleep last night which I don’t think is helping. It just seems so hopeless at the moment - I know younger girls than me get breast cancer but being 32 at diagnosis and it being grade 3 don’t seem like good signs to me. Add how quickly my sisters has spread and I just feel doomed.
Even if I do come through this ok the life I had hoped for seems so unatainable now. My partner and I were just starting to look at buying a house. I had this ridiculous idea that we could buy a house and then in a year or two try for a family. What I’ve got instead is surgery, chemotherapy, probably hormone therapy for five years, maybe radiotherapy… genetic testing and maybe some fertility treatment. Futile fetility treatment as I am sure there is a genetic link and I would be at least 39 by the time I finished with hormone therapy anyway.
I am struggling so much to find something positive to hold onto today.
I am sorry to read that you are feeling so low, please do call our helpline for a talk with one of our team who are here to support you and help you through this
Lines are open 9-5 weekdays and 10-2 Sat on 0808 800 6000
Hang on in their girl. You must have a fighting spirit to get through this. We all know it is a horrible time but just look for the simple pleasures in life and concentrate on the positive to help you and your loved ones cope.
I did the cold cap treatment and I never lost my hair so I would certainly recommend that you ring the nurse and ask if you can do this on your first session of chemo. Also I was very scared about the chemo and being sick but I was never ill once as the anti sickness tablets are so good. I did put on weight during Chemo with the steroids, when I thoight I may lose a bit !
Today is a beautiful sunny day , so get out in the fresh air for a walk. Try and walk every day during your chemo and drink lots of water. Keep strong my friend you can do it !!
Sending you a big hug. Tracy xxx
Thankyou Lucy - not sure if talking to someone on the helpline would be useful, maybe I will give it a try this afternoon.
Tracy - thank you so much for the hug, I definately need a few today! Think I may have run out of tears for the timebeing - has probably done me a bit of good to have a bit of a meltdown. Don’t really feel able to do it in front of family (other than my OH - and don’t want to dump everything on him) what with everything else that is happening. Really encouraging to hear that your cold cap worked. I won’t be starting chemo for a while yet and have an appointment with the BCN next friday so will ask about it then. Or maybe I will get impatient and call her - I feel a bit silly jumping ahead to the ‘vain’ stuff before we have properly talked about the medical side though!
I would love to concentrate on the positives - I’m just struggling to find any! I started a journal just before my original WLE and before yesterdays appointment I had listed my positives as -
Only DCIS
Only WLE needed - not masectomy
No chemotherapy
No hormone therapy
Radiotherapy shouldn’t affect fertility
No one has told me I am a gene mutation carrier for definate
…and was also trying to use my Shawshank mantra that ‘Hope can set you free’.
So out of those I’ve still got no mastectomy (yet - consultant mentions bilateral MX for future consideration A LOT though)
and no one has told me I am a gene carrier for sure yet - but they seem fairly confident that I am!!
I listed three pages of fears last night - did help to put them down on paper, hopefully I will be able to look back and find I have overcome a lot of them at some point. Also tried to list some ‘new’ positives. Came up with:
Grade three is bad - but I am currently ‘stage 1’ until told otherwise after SNL biopsy.
Being referred to fertility nurse - some vague hope for a family in the future? (bit tenuous that one!)
Consultant says all of the invasive area was removed in the first WLE - it is the DCIS that did not have clear margins. Although he seems very confident for someone who didn’t know the invasive bit was there in the first place - I mean, how does he know he got it all :o/ The point is - assuming he is right, that has got to be a good thing?
My partner is lovely and I am massively lucky to have him!
Oh my dear, we all feel your pain and fear. You will get sick of everyone saying this, but it does get much, much easier. All the uncertainty is just terrifying, and wants to swamp the positives. But I can hear that you know your list of positives is really important and looks good. Deep breaths, and here’s another BIG hug, you will get through this.
Quail
Thanks Quail - have been a bit more productive this afternoon. Made some dinner ready for when the OH gets home, walked to the shops to buy my sister a birthday gift (going to see her tomorrow) and done a bit of cleaning in the bathroom. Not glamourous - but betting than sitting here crying!
Walking to the shops and back was really tiring actually - I was much slower on the way back! Hopefully doing a bit of physical exercise will help me sleep a bit better tonight though. Being knackered has definately not enhanced my mood any today.
You are right about the uncertainty being the worst bit. I’m not scared of surgery - and my worst fear about chemo is losing my hair and being an ‘obvious’ cancer patient. If I could crack on with it tomorrow - even with all the other side effects - that would be fine by me. October 24th seems like quite a while to wait for my re-excision and SLN biopsy but I am sure it will come around quickly. Am back at work on monday so less time to sit a mull things over - hopefully will make the time go a bit qicker.
How long after WLE / SLN biopsy would people normally start chemo? I assume it would be longer for ladies who had a MX due to the recovery time - or does it not make any difference?
Thank you all for taking the time to reply to me today - I know I am being whiny and pathetic but I don’t feel I can say any of this stuff to my family and it helps to ‘get it out’ if you see what I mean.
Brady-you are not whiny or pathetic. Like all of us here you have had to deal with a horrible curve ball that life has thrown you out of the blue. Its safe to vent here and I think most of us have had v similar feelings.
In terms of when chemo starts after surgery. I had my SNB on 5/10/12 and chemo started the day after!. Thats probably not typical but the hospital I go to tends to arrange things quickly. Theres an October chemo thread where everyone who’s at about the same stage in their treatment can support each other.
If you are concerned about the physical impact of treatment google Look Good Feel Better courses as there may be one near you. You also get a free goodies bag of top end products. I did it 2 weeks ago and it was great to meet other women-we actually had such a laugh.
Sending you a cyber hug x
Well done you went for that walk and I know the fresh air made you tired but it will have done you good and your partner will be proud of you for making his dinner. He will love you no matter what happens to your body or your hair , they will always think we are beautiful. Bless them. x Remember be mindful of each job or task you do , dont let your mind wander. I found being in the shower in the morning my worst time as my mind was all over the place, but concentrate on the shower gel, the shampoo, how lovely your skin feels and maybe get a book on Mindfulness , which I found very useful. Keep in touch and we will all give you the support you need. Big hugs xxx Tracy xxx
Wow Sukiem - that was quick!! I have a feeling my hospital won’t be quite so fast. I havn’t even seen an oncologist yet and don’t think I will until after the re-WLE and SLN biopsy. In fact, I suppose I will have to wait for them to check on the pathology of the lump from the second attempt of the WLE won’t I.
Did you know it was going to be that quick - I imagine it was a lot to take in within 48 hours! Do you mean 05/10/12 though - unless I am really confused that is in the future :o/ Or am I being thick and you mean May 10th?
Well done you for dealing with it all happening so quick though - hope you didn’t have too many bad side effects.
I did have a look at the LGFB site yesterday and they do one session a month at the Berkshire Cancer Centre which is where I will be having treatment - so that is handy. I think I will definately go - like you say, the goodie bag sounds great and I will defo need someone to show me how to do fake eyebrows (assuming they will fall out?). Make up application is not exactly my forte! If I could meet some other younger ladies going through the same sort of thing that would be helpful. Not to say talking to ladies of other ages isn’t helpful - but I am very concious of being the youngest in the waiting room at all of my appointments so far. By quite a margin too - makes me feel ‘unique’ - and not in a good way!
Tracy - thank you for all your lovely posts today. The walk was definately a good idea and OH has scoffed the dinner down so it must have been ok. He really is fantastic and I know he will stick by me no matter what. I do feel for him though - we met when I was 22 and actually had quite a good figure and a pretty positive outlook. Ten years later and he is going to end up with a bald, fat (apparently you gain weight on chemo?), cranky person who is angry at the world and unable to give him a family.
Poor man did not deserve this
Must keep reminding myself to look after him too.
Being mindful of tasks is a good point. Am off out with my mum to visit my sister tomorrow so that should keep me busy. Am home alone on friday though - dangerous territory for overthinking and googling things. I might attempt to make a cake or something else to keep me busy. I am not a skilled baker so it could be quite entertaining!!
Hi brady-I meant 5/9/12. I’m not so sharp these days! I’ve only had one chemo and the worst side effects were acid reflux and fatigue-so far!
The LGFB is really worthwhile-the products are great (lancome eye cream/eye brow pencil and clinique moisture cream for example) and the lovely volunteers spent a lot of time on eye brows.
You might also want to consider going to the Younger Womens Forum in Brighton on 23/24 November (I think)-the details are on this site. And you are right-step away from the google! x
Sorry to hear your troubles. No wonder you feel so anxious after all that’s happened with your family.
I just wanted to say that it may be worth contacting LGFB asap as they can be so booked up that you might not get on one until the end of treatment.
Also, the helpline are amazing and definitely worth calling. They’re so reassuring and can help to allay a lot of fears. I felt so much better on the occasions when I called them.
Morning Brady,
Do you have a breast care nurse? Mine wasn’t/isn’t a kindred spirit at all. When I make little jokes she tries to smile in a pained way, and I make little jokes all the time–so you can imagine what a laugh-riot our get togethers are. Nevertheless, she was still a mountain of helpfulness and support, especially during those early days. If you have one–give her a call. There’s no time like the present to start building a relationship with her.
Also–We are here for you, and thinking about you–let that give you strength. Hie thee to Benchland or the Standing Alone in the Deep Dark Woods threads on these boards, where it turns out that even the most dire news is managed with a sympathetic ear and a wry laugh. Trouble shared is trouble halved! Finally, I was just a lurker, but the “Starting chemo in December” group that I followed was absolutely amazing at letting me feel that I wasn’t alone, and that I could get through it all.
Get busy!!! It is possible to look on these early days as a shopping experience: new pajamas–check, new slippers–check, new makeup–check, new wig–check. It’s possible to really take your mind off the ridiculous (IT IS, you know) google news by researching SUUQU eyeliner pens; I swear by mine!
Take good care–here’s a BIG hug. x
