Hi there,
Went to doctor with a small lump. Instantly refered to breast clinick at not too far hospital (NHS has wonderful recources despite the lack of money)…doctor, mammograph (clear), ultrasound where something small and odd showed up and biopsies taken. Consultant seen next week and the news of lobular, small, gought early so “just” op and month of radio aterwards, but we need to have MRI as well.
Today the results, now multifocal and treatment has chanced to blood tests, chest x-rays, seminal node removal, heart checks,bone scan, chemo before and after op, and then good knows what.
Many of you must have been in the same situation, any advice/comfort? Feel v.scared at the moment, especially because my aunt (0n mother’s side) is at the moment dying after inital diagnosis, and sucselful treatment 15 years ago and now it has “invaded” every part despite of regular checks??
Any advice ( flax seeds?) or any personal experiances would be so welcome.
PS sorry for any spelling etc. mistakes. Not a native English speaker
Sorry to hear about your news. I too have invasive lobular carcinoma and have had to have all the tests that you mention. All sounds very daunting at first but once you have your treatment plan set out you will feel easier. Every one’s cancer and treatment is different, we all react differently not only to the news but also to the treatment. I am sorry to hear about your aunt. My son’s best friend’s mother died last week of pancreatic cancer. But this isn’t going to necessarily happen to us. Many many people fight, and beat cancer and go on to live long, happy and healthy lives!
Feel free to ask any questions - either in the open forum or via a private message. Any time! and there is no such thing as a silly question.
Another ILC person here, I’m so sorry you’ve had such daunting news. I’ve also had all the tests and had mx/anc/chemo/rads earlier this year plus I have an aunt currently dying of BC. It is tough going BUT it is doable! We will give you lots of support, so ask all those questions that are running though your mind right now. Remember that there’s never such a thing as a stupid question, so if it’s something that worries you - ask about it.
I’m also extremely lucky to have excellent NHS care, it really does make the difference when you know that your team are doing their best for you.
PM me if there’s anything you want to ask privately and remember you are not alone.
Hi there - please change your user name. As Supertrouper and Nymeria say, there aren’t any silly questions when it comes to BC and treatment.
I was diagnosed with invasive lobular cancer 2.5 years ago. My tumour was very, very large and had come up suddenly (it had been there lurking and then I was given some HRT and it was like petrol on a fire). The cancer had affected 9/17 lymph nodes. It was also multi-focal as I understand is so very often the case with lobular.
I had a double mastectomy, axillary node clearance, 8 x chemo sessions and then radiotherapy. All that finish 20 months ago and I’m now on tamoxifen.
I’d be lying if I said going through all that wasn’t tough, it was. The thing is though we do get through it and knowing that other women had before me was a real comfort. People around us and close to us get ill and some do die and while we are always upset by this, it suddenly takes on a whole different meaning when we’re diagnosed with cancer. Remember there are thousands and thousands and thousands of success stories too.
I did make a lot of changes to my diet. If you decide to take any supplement (and I include flaxseed in that) it’s important that you clear that with your Oncologist. Personally I would steer clear of anything like that while I was having chemo. You may have seen recently that they found that taking fish oil can interfere with chemo.
I did find it helpful though to completely overhaul my diet. There’s quite a lot of debate about diet but one thing that is generally agreed is to have loads of fresh vegetables. It’s coming up to soup time so you could do lots of lovely soups like carrot, or pumpkin (soon). There is a research and diet thread if you want to look at things in more detail. Some people do comfort eat when they’re diagnosed but I wanted to have control of the one thing I could do something about and give myself the healthiest food I could.
If you’ve got any questions now or when you start treatment, don’t hesitate to ask either on here or via a PM.
Thanks for all of you.
Elinda45, the user name is because this is not a high security/risk site so for my password I used one of the pets name and because the lovable beast is always refered as Silly … i thought that in my current muddled mental state it would be a combination I might just remember.
It has been the unbeliavably rapid change in the state of diagnosis and treatment that has left me wobbly. From the early “it is small and has been cought at early stages so things are going to be quite ok” (especially as I considered my self so lucky 'cause the lump I went to the doctors was just a cyst and this did not even show in the mammograph, the latest of which I had 4 months ago) and now into this, all tests a-go,which really is scary. At the moment every little niggle and twinge is…omg the cancer has spread there as well.
Ct scan is on 3/10, seminal node removal on 4/10 and the oncologist on 5/10. I suppose that when one knows for sure the true nature of the beast and how to battle with it, it all becomes easier.
Changes in diet have been made, green tea and berries coming out of my ears. Shall definetly check on the flax seeds with the oncologist and thank you Elinda mentioning the fish oil. Have been taking codliver oil with calcium for my osteoarthritis but stopped after the biobsy as was bleeding so badly (cl oil thins blood)…the bruise afterwards was truly spectactular!
Now just to start worrying about practicalites ahead. I know the advice is to take a day at the time but I live in semi rural location and the trip to hospittal, although not overall too long, includes a half an hour ferry trip (expensive with a car…and ah how I look forward to the winter and bouncing on the waives after my chemo…)so forward planning how to get there, who can (afford) to collect, when it is necessary to book the dog into kennels etc. is a must.
Practical advice as for how long the chemo sessions last etc would be very much appreciated.
All the best, and continuing progress for you brave ladies who have already been through this. many thanks for the replies again x
Hi there,
Just being nosey and spotted your comment about being 1.5 hours ferry ride plus driving to hospital. Not knowing where in UK you are, can’t comment precisely, but just to note that where I am in central Scotland, people travelling in from the islands are usually given overnight accomodation (at least for rads; I expect also for chemo) and many are able to reclaim some of their travel costs from their local health boards. Is it possible (it may not be) to get volunteer transport from ferry to hospital to keep costs down? I am aware of someone who lives near a ferry port who is a volunteer driver for my local hosp which is about an hour from the coast. It would be worth speaking to someone sooner rather than later to find out what help you can get. Also *may* be worth contacting MacMillan to see if they can offer any pracitcal/financial help. If oyu happen to have critical illness insurance, then now is the time to dig out that policy!
Apologies Silly about username - I thought you were just being mean to yourself.
I do understand your concerns. For some of my treatment I had an hour’s travel each way as I also live in a semi-rural location. It’s very difficult to say how long the chemo sessions will be. I went to somewhere busy and shortstaffed for half my treatment and had very long waits there - I think a 6 hour stint was the longest. Other times I had much shorter waits but frequently had to wait two hours. The actual chemo took about 45 minutes to administer as I recall (I had that nearly two years ago now so it’s hard to be precise).
It’s also hard to know how you’ll react to chemo. Some people even continue to work, others of us had strong reactions. If it’s possible I would suggest that you have someone go with you the first time that can drive you there and back and give you moral support.
With regard to the dog, again it depends on how you are after chemo and also how much support you have. You could book the dog into the kennels for the first three nights after chemo and then get a neighbour to collect him/her for you. You’ll probably love having the dog for company so if neighbours and friends are willing to walk the dog for you that would be good until you feel up to it.
After each chemo session I didn’t really pick up that well until day 10 or 11 but others pick up after a day or two.
The effects of chemo can be cumulative too, so you may need to adjust your arrangements as treatment goes on.
I think RevCat’s suggestion of Macmillan is a great one. Hopefully they’ll be one in the hospital where you’re going for chemo, if not there should be one in the area. You could also ask your BCN if there is any help to be had.
Re flaxseed - that can also has the effect of thinning the blood too.
Thanks RevCat and Elinda.
Well spotted, west of scotland it is. The advice about the accommodation and travel costs was great, as well the reminder about flax seeds also thinning the blood (of course, plant omega 3).
Elinda, have come across the excellent chain about nutrition to which you are contributing so well. Have not managed to have the strength to read through all it but may join in there later as stil slightly confused about soya in small quantities.
Dog advice great, unfortunately a slight “problem” dog. 8 years old when adopted from rspca. has spent all previous life in a flat never going out nor meeting any other animals. Most gentle of things but outside so scared of any animals ( even the sheep and animals on telly!!) that encounter with other dogs becomes out as agression, so not too many takers for walking. We’ll manage though in one way or other.
chemo probably schedluded to start on the 12/10 so keep fingers crossed for me…and pray for mild winter…house is half a mile up hillside and this winter snowchains were needed for five weeks. not good if needing to get to doctors/hospital in a hurry.
Will certainly keep everything crossed for you - hope the treatment goes well and that the winter isn’t too bad. Please let us know how you are getting on.
take care, Elinda x