Recently Diagnosed and Frightened!

Hi Rachel.

Having being diagnosed with stage 4 from the initial diagnosis, my advice would be to take each day as it comes.  There will be waves of emotion from feeling good to bad, it's a rollercoaster but regardless of numbers and stages having cancer is serious enough.  You only have one life and no one (cancer or not) knows when their time is up so make the most of every day, find something to smile about every day, do all those things you want to do and spend time with the people you want to.  Life can be short but make it sweet!! And just take it one day at a time.

My journey has been a tricky one, the cancer is being a bit of an a##e and not responding too well to most things that have been thrown at it but it's been a year and I'm still here. I'm still fighting and not planning on going anywhere for a while, regardless on what the cancer thinks!  We just need to find the right drug!!!!

Whatever your journey brings, try not to let it define you.  The medical people will do their best but it's still your journey.  Unfortunately it is what it is, we can't change any of it and give it back so just have to make the best of it.

Hi

I understand how you feel. I was diagnosed with grade 3 breast and lymph nodes cancer on 7 March the biopsies confirmed it had gone into my lymph nodes..I had surgery 5 April they found 4 breast tumours 18 mm, 6 mm, 5 mms , 1 mm and 4 lymph nodes had cancer they removed 20!!  I now have to have a CT scan on 4 may I'm petrified it could have spread ..I also have hormone positive and her2 positive...so been told I need 4 months chemo then another operation, radio therapy followed by a further 8 months targeted chemo...it's all so much to take in but I'm actually ok facing all treatment...it's the scan results that I am most scared of so I truly know how you feel. I have not come across anybody else with her2 yet! I have to say the care and support at my hospital is outstanding. I'm getting married 4 July in the middle of the 4 months chemo like you I had the fear what if it ??? But I'm determined to beat this and try and work odd days to keep me focused  I have a daughter at uni...your son is young but try and stay focused and on your good days ( that's what I'm calling mine) have adventures with your little boy ..I'm lucky to have a wedding to focus on...please be strong lots of hugs xxx

Hi all

Thank you for the replies

Flamingo - I found out today that I am HER2 positive (as was my Mum interestingly) - so we can potentially swap stories on this ... will you be having Herceptin?

The “Scanxiety” is the worst isn’t it! I’ve found the advice here really useful - to try not to focus on the “what ifs” and take one day at a time.

DaisyDoo - while I’m still waiting for the biopsy to confirm whether it is for certain cancer in my liver - I am starting to come to terms with the fact that this could indeed be the case, as my team have referred to the scans as “very suspicious”. I’ve started to find more peace with the possibility of being stage 4, and have read some very inspiring posts from others with secondaries / mets that give me hope and confidence that there is life still to look forward to, even if I am living with cancer.

The plan now is to have the liver biopsy to confirm / rule out the secondary cancer, a PET scan to check for any (further) spread, then the ECHO before starting chemo / antibodies.

I’ll be having 6 rounds of Docetaxel and Carboplatin plus simultaneous Herceptin and Perjeta which I’ll continue to take longer term post-chemo.

Can anyone share any experiences of similar treatment?

I’ll be assessed again for surgery / potential radiotherapy following the chemo.

The support and kindness from everyone has been overwhelming - thanks to all who have replied here - I’m wishing you all the very best of luck on your journeys, and will update again when I have further news.

Hi Rachel'S

Yes I will have herceptin. The plan at the moment ( as we know it changes all the time!) Is 4 months chemo with an odd name chemo and herceptin then another surgery as they didn't get clear margins , then radio therapy followed by a further 8 months of herceptin. I will then have 10 years of tablets ...that gave me hope!! Are you having a picc line? I'm not getting a choice due to risk of lymphoma in right arm my breast nurse said the picc line is kinder as they can also take blood from it!! I didn't realise the implications of having most of lymph nodes in arm removed...the support and kindness of all the staff at hospital is amazing, I am really pleased I joined this site ( one night when feeling sad) just heading another person having her2 positive names me feel less alone - thank you ! The worry of waiting results is so hard. I have told myself whatever the chemo throws at me deal with it..I have been asked if I want to bring wedding forward but this has taken away my hen weekend, our honeymoon it's not taking away our wedding! I seemed to loose weight before surgery I know some was fear and stress but I'm 3 weeks post surgery and gained 4 pounds I feel amazing ( apart from being petrified - that never goes away) I have done 2 days at work and it has helped me so much... I know the scan could show things that I have no idea how to deal with and that will also change the plans..it's the waiting I just want to start chemo...have you seen side effects of herceptin? Mixed with the other chemo side effects of i get any my wedding weddings day could be interesting.. I have had a private consultation for a long real hair wig so I hopefully will look ok. This thing we have brings us all so many challenges and roller coaster of emotions ...but knowing we have some one to chat to really helps- thank you !!...my work buddied me with a lady that had grade 2 breast cancer in another region - she is amazing we text through the day and she tells me things that I need to know she is 2 years on ....well the scanxiety  truly is the worse but for me are minute 3 sleeps then it's CT scan day for me ...I hope we can all stay in touch to support each other and compare notes !! Big hugs xx

Sorry for spelling your name incorrect ...rachelIDM 

Hi Rachel,

I'm so sorry for not responding sooner - I did mean to but I hesitated because I don't have any experience with secondary breast cancer and didn't want to just wade in. Then life got in the way and I've only this morning had a chance to get caught up electronically.

While I can't speak with any experience of stage 4 (yet), I can say the fact it's grade 3 means your treatment will start quickly.

With regards to treatment regimen - Jen's was HER2+ and her first rounds of chemo consisted of PTD (Pertuzumab (Perjeta), Trastuzumab (Herceptin®) and Docetaxel ) - our oncologist insisted on using the generic terms which made for confusing conversations in the early days. Jen didn't have Carboplatin.

I'll not lie - it was rough. Jen would have a round of chemo once every three weeks, be laid up for the best part of the first two weeks, then up and about the third week in time for the next round.

Of course, you may react differently but I think it's worth planning for the worst just in case.

The best practical advice I can give:

Get a good thermometer because you'll need to be taking your temperature periodically through the day and whenever you take paracetamol - this is to pick up any infections - but the oncologist and onco nurses will explain this all to you along with any dos and don't particular to your treatment.

Make sure you keep your fluids up - I found it best to buy a 2 litre 'gym' bottle and dispense it from the fridge so we could keep an eye on intake.

Don't suffer any side effects in silence - keep a list of any niggles to discuss with your oncologist but do speak to your breast care nurse or key worker (they should have given you a priority phone number to call during treatment) if you have any distressing side effects like vomiting, diarrhea, rashes or anything else that's not right. For the vast majority of side effects they can provide you with relief. If the first attempt doesn't work, let them know. For example, Jen tried three different anti emetics until the forth one worked.

I'd also say eat what you want when you want (others may disagree) within reason. Particularly if you lose your appetite. Try to aim for nutritionally-rich foods. Failing that, foods with high calorific content.

With nutrition in mind, you may well not lose your appetite but you're likely to be tired, so for the first round of treatment it might make sense to cook up some batches of spag bol, lasagna (or whatever) and chuck them in the freezer. Essentially, food that's quick and easy to prepare for you and your trooper. That way you don't have to expend too much energy doing the essentials.

Make sure you keep your electrolytes up - particularly if you're not eating, have loose bowels or are vomiting. This is also true if you're drinking a lot of water because that can flush electrolytes out too. Breakfast drinks and lucozade-type drinks are particularly good for this, I found. Though do speak to your primary care people if you're having gastro issues because they should be able to help.

Hair loss is a strong possibility. Jen pre-empted this with a pixie cut (get me, knowing ladies' hairstyle names - I've added it to my lexicon and now know three types, including 'bob' and 'perm') and while her hair didn't entirely fall out, it thinned so noticeably that we shaved it.

On the subject of appearance - Macmillan do an excellent 'Look Good, Feel Good' session, along with a Headstrong session - I don't know if it's nationwide, but I thoroughly recommend you book up for them if they're available. That is, of course, if you even care what others think. I don't, but Jen did/does.

You can also get AMAZING wigs. I'm not exaggerating. When Jen wore hers, it looked entirely natural. I believe these are subsidised by the NHS. I think we paid a nominal fee of around £75, plus 20 or so for the stand, sprays and whatnot. Obviously this may differ depending where you are.

I hope the above doesn't freak you out. As I say, you may not react in the same way at all, but forewarned is forearmed.

For what it's worth, Jen's (grade 3) tumour had spread to the lymph nodes but was completely destroyed by the chemotherapy. Completely. The chemo regimen is used to kill any errant cancer cells that may have snuck elsewhere but also stop growth (prevent cell division) and reduce size, so it's reasonable to think that a liver tumour (if indeed it *is* a tumour) would respond similarly. It's worth checking with the oncologist what their expectations are in this regard because I could be talking rubbish.

That said, based on the research I've done, I do know it's rare for surgery to be performed with secondary breast cancer so if they are saying it's a distinct possibility then I'd say that's definitely a positive. Also bear in mind the liver is particularly good at regenerating so that's a definite plus.

I hope somewhere in my inane ramblings you find something of use.

Jen and I are thinking of you.

Dom.

Thank you for the continued replies  it really helps to have this ongoing dialogue with others who are / have been in a similar position.

Flamingo - I’ve certainly been reading about the side effects of Herceptin, but as I haven’t started yet, will have to see what happens and adapt as I go. My oncologist seemed to feel that the main impact of my chemo / antibodies would be fatigue and the possibility of early menopause - the fatigue I’ll just have to deal with as best I can (great tips above from Onetoomanybiscuits) and I’ve opted not to have the additional injections that could prevent the early menopause - I’m confident in the fact that I don’t want to have any more children, and don’t feel that strongly about having the preventative treatment. 

Have you thought about whether to try the cold cap? I was pretty sure I wasn’t going to bother - but my BC nurse feels I should give it a try.

I really hope that you are well for your wedding day - have you spoken to your team about dates and is there any possibility of flexibility with your chemo schedule to try to give you the best chances of a “good” day? I know it’s impossible to predict how we will react to treatment though!

With regards to your scan - I know it’s a worry - and be prepared for not having all of the answers right away - I’ve had both a CT and an MRI scan, but my team still can’t say for sure whether the area of suspicion on my liver is secondary cancer - I need the biopsy and PET scan to confirm.

IF (and it’s a big IF) something does show up - then try to take some comfort in the fact that many people are now living for many years with secondary breast cancer ... there are a whole host of treatments that can keep these cancers under control, and new ones are being developed all the time. I’ve been reading a lot on another forum specifically for those with secondary breast cancer, and there are a wealth of positive and inspiring stories! But let’s not get too far ahead of ourselves - neither of us have been diagnosed with secondaries!

Onetoomanybiscuits - thank you so much for your ongoing words of advice and encouragement - it’s clear that you have become very knowledgeable in the subject, and it’s really useful to hear your perspective! 

Yes my treatment will be starting in the next 2-3 weeks once PET scan and liver biopsy results are back.

I’ve been reading a lot about the potential side effects of my treatments and getting myself prepared - your advice is really useful. I’m really hoping to feel as well as possible between cycles as I have a lot of activities / events planned over the summer - but I know I need to remain flexible and take each day as it comes.

I understand that for them to consider liver resection surgery for a secondary cancer, it would need to meet strict criteria - only one tumour / easily accessible / no spread elsewhere in the body / patient in good health etc. So you’re right - the fact that this has been mentioned by both my surgeon and oncologist can only be positive! They did also say that it may not be a necessity at all, as with a bit of luck - the chemo / Herceptin will completely eradicate the tumour anyway, so I’m crossing everything for this outcome!

Thank you again for all the support on here - I’m finding it truly invaluable.

My thoughts are with you all on your journeys 

Rachel 

Flamingo - I forgot to answer your picc line question. I’m actually having a portacath fitted in my chest which sounds slightly different. This needs to be done under general anaesthetic but I feel it’s a good alternative to then having to find a good vein every time!

Do you have any idea of when you will get your CT scan results?

Will you be able to do something nice in the days after your wedding in place of a honeymoon? Do you have any plans to reschedule the honeymoon after treatment? (I’m learning myself that I need to reconsider the way that I make “plans”! My sister and I have a holiday booked for late September - my team have said that as long as my chemo does not need to be delayed for any reason (adverse reactions etc.) then the trip could be doable - so I’ve made this a personal goal, and am keeping it as something to look forward to!

All the best - Rachel x

Hi Rachel 

Thank you for your lovely reply, I have CT scan 4 may and the results with breast care surgeon on 9 may. It has helped me so much knowing there is someone else with HEr2 positive as it is hard to get your head around 12 months of chemo! I do not want more children so if the chemo brings early menapause so be it. I am really hoping the oncologist will be nice and allow the chemo to fall week 3 for the wedding I have best chance of being at my best. We hope to get a day in Cornwall day of the honeymoon which is better than nothing. I asked if I could have a holiday in November if well enough in Spain and was told possibly yes but when they said I'm having a picc line for pretty much 12 months that idea went out the window ...I will be happy with fun days out with my partner ( on the good days lol) I am determined to work during this as I know that will keep me distracted. Oh wow definitely aim for the holiday...have you had lymph nodes out yet? I had 20 removed and it's meant I my arm now comes with an instruction manual ( no sun, no hot water, no cuts or grazes, no lifting....it's endless) but small price to pay knowing at the moment the 4 diseased lymph nodes are gone. The worse part is the waiting.  I never thought I would wish my chemo would start soon but I feel the quicker I start the quicker I blitz this thing. Like onetoomany biscuits said one day at a time and his wife Jen is one year on now ....my friend at work ( he is doing my wedding wig hair) said after my second chemo he will shave my hair so I don't have to endure the trauma of it coming out. I don't think it would have effected me that much if I hadn't been getting married but a girl wants to look her best ln her wedding day.. I'm glad I have such an amazing thing to focus on...you must do the same with your holiday. I could not get my head around I could be so unlucky as to get HEr2 positive and grade 3 tumours and I feel so well.. I'm 4 weeks post surgery tomorrow and apart from a VERY swollen breast and very bad nerve damage I look and feel well....let's keep our fingers crossed I just hope the CT scan shows what it needs to show and I can just move to chemo but I guess it's never that easy 

Good luck thinking of you flamingo xxx

Hi Rachel, would you recommend the book? I’ll share it with friends who might benefit if so.

thanks 

amy x