Inflammatory breast cancer

A support group for people affected by inflammatory breast cancer to come together, share experiences and ask questions.

I googled and scared myself

Sha80
Posted by

Hi,

I have just joined the group and wanted to say hello I am 36 and from North-east England.  I was diagnosed in March this year but didn't realise the importance of the 'inflammatory' part of the diagnosis up until recently.  I just stupidly thought I had breast cancer and sadly lots of people get it and are fine once you get through treatment.

For some reason yesterday I googled inflammatory and have well and truly scared myself with what I read.

I was just wondering who was active in this group and how people are getting on.  I have just had fifth of six chemo cycles FEC-T and plan is for mastectomy and radiotherapy.

Thanks

S.

Dreamthief
Posted by

Morning  

Warm welcome to the Mac breast groups - Not a club anyone wanted to join :(

Place £5 in the 'swear box' for mentioning Dr Google :-/

As you have found it's just about the worst thing you could do. Most of the info out there is way out of date or worryingly misleading.

Hope you weren't messed around too much at the start as inflammatory can be easily mis-diagnosed by GP's. IBC is classed as aggressive and accounts for only 5% of breast cancers so is fairly uncommon but the treatment for it is very similar to other types of BC.

The main differences being it's always chemo before surgery - Surgery should happen within 4 weeks of finishing your chemo sessions and radiotherapy - which again should start within 4 weeks of your surgery.  The maximum of 4 weeks between is quite important to make sure you get continuity of treatment to help eliminate you getting any recurrence.

Have you been told anything else about your diagnosis, like if it was caught early or has spread a little ? or if you are ER+ or HER2+ positive as yet as this could mean extra meds after surgery ?

Hope you are coping with the chemo sessions OK, it can be tough going some days :(

Do click the Chemo Club link under this message to check out and chat with the other ladies having chemo at the moment. It's a regular monthly discussion in the main breast group.

You will find most of the activity here is either in the main breast group or the Under 50's Breast Group - Unfortunately because Inflammatory is uncommon this group is fairly quiet. However there are loads of us in the other breast groups so you have lots of friends here you haven't met yet :)

Hugs at a scary time, G n' J

Reluctantspider
Posted by

Welcome to this very special club, I wAs diagnosed 3 years ago, with mets in spine, DONT GOOGLE if you do remember all the stats on there are years old things haven moved on in an exciting way.  Discovered in December I had mets on my liver., after 6 monthsjof chemo etc I'm back on track picking up the pieces of my life and getting on with navigating my life with a compass in a magnetic box.  Sending you a big hug xxxxxx

Sha80
Posted by

I will deposit my £5 :) in the jar, I knew it was a mistake once I started and couldn't stop clicking.  I am naturally far too curious and everything happened so quickly.  

 I started chemo pretty much straight away and have had no further contact with BCN or Breast Clinic as currently under oncology, it was mentioned at last oncology appointment that they would liaise with surgeon now so it seems things must be going in right direction as the plan hasn't changed, but feel like I am waiting in a bit of a vacuum of info and not sure what to do, hence me turning up here .  I think I just haven't processed anything properly as I go day by day and I need to do something about that.


Thanks for responding, I will have a look in the other groups and see what's happening.


I have had a few blips in chemo the T is not great I have extra steroids this time to get through worst, which isn't helped by the injections as well on top.  I have also had issues with a burn on my hand from a leak on FEC, but one more cycle after this and then on to next step.


Hugs

S


Sha80
Posted by

Hi,

Glad you are getting back on track.  I hope it continues.  It's all just quite overwhelming I need to find a way to move forward without being silly and looking at things that will make it worse.  

I am my own worst enemy sometimes


X



Dreamthief
Posted by

Hi  

Getting through all this one day at a time is fine, don't overthink stuff or you'll fill your head with unwanted clutter :-)

Know exactly what you mean about it all being a surreal rush. You chug slowly up the waiting results roller coaster hill anticipating what will happen when you reach the top - You only hear the word cancer, the brakes come off and you hurtle round totally out of control getting bashed about :(

BTW - what are the injections for ? Increasing your bone marrow, protecting your ovaries during chemo, or something else ?

Sorry to see you got a FEC burn, but that can happen - if it aches one of those microwaveable lavender wheat wraps or a hot water bottle can help ease it, just make doubly sure it's not too hot as your finger nerves may be numbed a bit by the chemo.

G n' J

Sha80
Posted by

It is most definitely a roller coaster.

Injections are Filgastrim (sp?) for bone marrow, I have had them every cycle for 7 days starting on day 3 post chemo.


Thanks for advice on FEC burn :). It's not as bad as it was and plastics are happy to leave it as is, I have some numbness in fingers but that could be from T rather than the burn.


S

Reluctantspider
Posted by

That's exactly how my Daughter discribes this whole experience like a continuing roller coaster and when I had a blip in December her words to me were buckle up mum were going round again, she's my rock

carolineD45
Posted by

Hi S, 

Well done for completing 5 of your chemo sessions, just one more to go! Out are doing very well! Hopefully side effects have been bearable for you. Most people found radiotherapy a walk in the park compared to the chemo (very tiring though), and I hope you will find that is true for you as well.

As for the inflammatory bit, and what is out there on Google, best avoid reading any more. Lots of that stuff is so out of date, very unhelpful, scary and no longer true. Treatment has improved massively over the past ten years for this cancer. It appears lost of the stuff written about inflammatory breast cancer regurgitates the same standard brief description, which makes your hair stand on edge. It is time that someone wrote something slightly more upbeat to reflect the current facts and how current treatment is so much better to deal with this type of breast cancer. Avoid dr Google is my advice too.  I wish I could erase from your mind the things you wish you had not read. Stick to Macmillan and breast cancer care and NHS websites and take advice from your medical team. Focus on the positive! 

I was diagnosed with inflammatory breast cancer in 2010. Had EC and then mastectomy with reconstruction, and then radiotherapy. I had my mastectomy three weeks after finishing chemo, and radiotherapy started about six weeks after surgery. To start radiotherapy I was told mastectomy area needed to be healed first, but a delay in starting radiotherapy was no problem. 

Not many people are on this inflammatory discussion group, as there are not many of us. We are a bit rare. I occasionally pick up messages here. Still worth posting though, you are not alone. Happy to answer questions.

Wishing you the very best - hope all goes smoothly for you with the rest of your treatment. 

Warmest wishes, 






Sha80
Posted by

Thank you for the positive emails it's nice to hear something a bit more upbeat given what I have read recently :)  I think you completely correct and more positive things need to be written about it.

You have all helped me more than you can imagine today as this morning I couldn't see me getting a smile on my face and here I am feeling a little bit calmer about it all


X

krissie
Posted by

Hello lovely ... Yep it is a scary place when you google our illness . There are a few of us about especially on our Facebook page where there is over 110 ladies with this illness in all stages of treatment . We are all here to help with any questions that you need to ask as we are a rare group of ladies . I hope you get the answers that your looking for just remember your not going through this alone xx

wendoxford
Posted by

Hi Sharon

I think I have "virtually" met you on FB....we must stop meeting like this...I was diagnosed in 2013 IBC and mets (lymphs & bones) and I am still going strong...if that helps...I blogged my way through the whole process and beyond...largely because it helped me to communicate what I was feeling openly and partly so I didn't have to keep talking about it...The early stages of the blog are about chemo if that's helpful in any way...

I know it's a bad idea but my fingers just seem to take themselves to the google page....:(

www.wendoxford.wordpress.com


Wendy

JakeB
Posted by

Hi Sha80

Welcome to our select little band...not that any of us wanted to be here of course... But welcome anyway!!

DON"T Google.  But you're perfectly normal if you did because I think we all do. `it is true what everyone else has said, the stats are out of date, misleading and, actually, only stats. They don't reflect the uniqueness  of us all as individuals.

I was dx in July 2015, had FEC-T (completed end of Nov),(and found the T bit especially hard)  non-skin sparing mastectomy and full axillary node clearance 3 weeks later and started rads 6 weeks after that.  Surgery and rads definitely far easier than chemo.   I also had ovaries and Fallopian tubes removed in May as I'm strongly ER+, Now just on tamoxifen.

You can most definitely do this. You are almost through the worst bit, ie. the chemo.  You will gradually start to feel more human again. Be kind and gentle with yourself. It was only after I stopped active treatment that I realised what I'd actually been through...many find this can be a tricky time, but definitely recommend joining the FB page for Inflammatory Breast Cancer - there's only about 100 or so of us but it's an active group and very supportive. Good luck and stay strong! Xx

Sha80
Posted by

Hi Wendy,

Good to know you are going strong.  I will have a read of your blog, I do write things down as an outlet of some of my feelings, but haven't done it lately, it might be about time

X

mandyp
Posted by

I googled before/after and even now and continually scare the pants off myself. However since diagnosis I've been feeling ok. Finished 3 rounds of Fec and start T and Herceptin on Friday. Pretty nervous about the T as Fec Has been ok so am due a bit of nastiness! Hopefully not.

I have decided i am going to be fine after this as i have found people that are and I will be one of them


I try to be positive (in between the odd tear and anger, why me type of thing). Everything is shrinking for me so thats good news and surgeon has said surgery around start of September. Even mentioned reconstruction in one to two years depending on how I am.