Hi Delly where are you at with your journey as you were posting when I first found this site. What is the problem you've been having with your eyes if you don't mind me asking. I lost touch with things for a while as everyone seemed to go to Facebook and it went really quite on here. Xx
Hi Annie A so pleased you feel a bit better about your diagnosis now. Thanks for the guardian angel compliment too. My friend Bev who I met during chemo bought me a lovely guardian angel keyring for my birthday last year and she hangs on my bedroom door handle and I touch her every night before I get into bed and ask that she keeps us all well. Might seem a bit daft but it's just me being me. Do you have your treatment plan in place yet?. Xx
AnnieA and AnnDaw - I'm soooo glad you've found each other. Brings it all to the fore, as to why this Forum is so incredibly valuable.
Much love to you both
Hi I have joined a Facebook closed group called Triple Negative Warriors UK. There are other ladies on there who have had or are going through treatment for triple neg like us. Ask to join, there is a lot of helpful ladies and info for this.
I was diagnosed 13 Feb, treatment plan 6 March and mx 17 March, starting chemo in next few weeks.
Hey Maria, you're welcome. I just hope, want and wish you to be well.
I apologise. You were not being ignored, just that Vicki's history is so bloomin tragically awful and beyond belief, don't you think.
I said about hoping you return to work soon, because of your reference to it being "isolating" - and can so appreciate what you feel in that respect. Hope you get through it all soon, and regain strength. Plus get back to work soon, to bring you back to some kind of "normality" and camaraderie, hopefully give you a lift out of the s - - t.
Much love to you and all others on here,
Jeeez Vicki. I'm actually lost for words to give and say to you, as to what you've been through and unnecessarily put through. Am no way surprised your trust is "non existent. That must have been such a huge massive shock and a huge massive set back to you and your life, at such a young age too at 19. And you're now only a young 44.
Yes, we hear, or read of occasional misdiagnoses. You, unfortunately, are giving us direct experience of such. And your attitude is mine exactly, "preferring to know the worst case scenario, then anything better is a bonus"!
You, my dear woman, make me feel very, very lucky. But more importantly, very HUMBLE and sympathetic to you.
I so very hope and wish you to be well. I'm sending you a long, warm, tight, loving hug with my wishes for a very speedy recovery. I shall now read your blog.
Please do keep us in touch with how you're doing, will you.
Maria - I hope you also recover quickly and that you're back to work soon.
Much love to everyone
Delly xxxxxxxxxxxx & xxxxxxxxxxxx
Mornin lovely ladies
O and U - Eye's doing okay so far thanks. Only threw it in as a comparison. Didn't help that the pre-op notes stated that they were an eye hospital that didn't use sharp needle anaesthetic, and then the medics didn't inform me that that was they were doing. That was the phrase I was looking for 1852 "forewarned is forearmed". Thanks for that. Glad to hear you're coping sweetie.
O and U - really sorry to hear about your lung complications. That's really tough for you darlin girl. Is it something such as Cystic Fibrisis. Got my fingers crossed for you too, that you don't have any lung infection complications and the braver onco's gamble pays off for you.
Wishing everyone well
Hi Delly sorry to hear you have had the added complication of an eye operation. I totally agree that it is always best to be prepared for the worst but hopeful that it might not be and a little bit of optimism can get you through the scary bit. As you say we are all on a journey but taking slightly different paths. I have the added complication of a serious lung disease and my first oncologist told me I needed to seriously consider the risk of recurrence of cancer against the high risk of the chemo damaging my lungs I could die of infection. Second opinions and change of oncologist and I am on the chemo road the fact that the side effects are not as bad as I feared is a bonus but i know it can all change and fingers crossed I don't get the infections my new oncologist is throwing everything at it. Love to all going through this and all the posts have been helpful
Hi Onwards and Upwards - Erm, I was also referring to 1852's "feeling a bit insulted" and the point "she" was making, having had tough time of it, along with many others. Guess it's a very personal thing as to whether you'd prefer to know what the worst can be and then be better prepared for it to be, or be pleasantly surprised when you don't actaully experience the same. Just had an eye op. Everyone told me it was painless and a "walk in the park" - even the eye medics. Wasn't and a second wasn't, and I have a high pain threshold, and a medical background. Despite so called "numbing" eye drops (usually sufficient, I was told), had a dirty great big needle stuck in me eye, and then waddled about. Not at all painLESS. Would have been a much easier experience for me, had the eye medics warned me that it wasn't going to be comfortable - there were complications in my case. I'd have been more prepared for it being more traumatic, as it was!! The whole BC experience is traumatic, physically and mentally - whether its a lumpectomy, mastectomy, with or without rads and chemo. So why even try and dum it down. The supports there before and AFTER however and whatever. Sometimes better to keep it "real" though.
Hi Delly and Caroline I had my first chemo on Monday and so far no real side effects everyone is of course different and I might yet get all the side effects going but if it is possible to make this scary process a bit less scary for those facing this and to tell another story I think it is a good thing. No one going through this is taking it lightly and everyone is scared to bits but we draw our strength from each other and we need to know the experiences both good and bad to get a balanced to it and to give support to those who are suffering side effects as that could be me in a couple of days or on my next treatment but positivity is key to this and if hope can be given and a bit of a lighter side I am all for it along side the scary bits love to all going through this
Ooooo-errrr - Sorry girls, didn't mean to set anything off with ref to "stomach bug". Wasn't meaning it in a "strong" way, was just "gently" picking up on a point, of Caroline making light of it for herself really. Plus having known other peoples chemo totally knock them for six, as sounds for you 1852, and sometimes for a long time after. Hope you're well recovered now 1852 and have been able to move on from such a traumatic experience, albeit perhaps not as the person you were, but with different "strengths" gained from it.
Love and good wishes to everyone
Caroline I think your comment no worse than a stomach bug a bit insulting to people like me who went through a lot of problems with chemo it is not the same for everyone we are all individuals I don't scaremonger or try to frighten people either . I am three years passed diagnosis I had two lumps in one breast so my trust recommend mastectomy followed by chemo . It is doable but challenging at times good luck all you starting on this journey x
Crikey Vicki - Thanks so much for letting us all know your findings. Yeh, had I been in your postion, I'd have been appalled/shocked, and it shouldn't be that way. The sad but fortunate thing is - you had the feeling/"sense" to go have a 2nd opininon elsewhere. Many women wouldn't have. I so understand you, in your saying "when your head's all over the place" - isn't it just.Bombarded in fact. It may be beneficial to others, to make these differences known elsewhere, as well as on this Forum, because in "reality" the care should be STANDARD throughout the country, shouldn't it. Glad you've opted for the Leeds approach. All good healing wishes, strength, and a speedy recovery to you Vicki.
Hi Caroline - So pleased to hear your tumour is shrinking, but mmmm, I think you're being somewhat demeaning of your and others chemo, in your similarity to a stomach bug!! My good wishes to you too, for your recovery.
Love to you both and everyone else
My grade 3 tnbc is shrinking a little12 days after my first chemo.
About 100 hairs fell out yesterday so I thought that something would happen soon.
The chemo is not pleasant, but to put it into context, it is no worse than a very bad stomach bug.
As an added further to ANYone - it makes absolute sense to a surgeon, to opt and ask for a double mastectomy, where it's genetical. But, not when it isn't. I had a primary in one boob 2006 > mastectomy. Had the absolute misfortune to have another "primary" found and diagnosed 9 months later in the other (NO genetics) > mastectomy. Was just down to bloomin bad luck. Doesn't mean ANY of you will experience the same!! The surgeons will always fight ANY request to remove a healthy breast, unless there is genetic evidence to support doing so.However, having said that, my X neighbour fought and fought her corner, to "elect" to have her other healthy breast removed (no genetics), underwent psychiatric evaluation for, and the sugeon eventually gave in to the removal of her healthy breast!!
Love to all of you
Hi Delly tthank you tnbc is just short for triple negative breast cancer, re double nasectomy just wanted to ensure no chance of recuurance but surgeon said this course of action was
lots of love x
Hugs and best wishes to all who find themselves here.
Just to say that surgery before chemo isn't always how it's done. I had surgery first. I had a 1.4cm lump in the breast and another the same size under my arm. I suspect they thought I had a serious lymph issue, but it turned out that only one lymph node was affected. The little trooper swelled and swelled but didn't appear to let anything through. I started chemo last week.
Also, a double masectomy might not always be the way forward. I had ER/PR breast cancer in the other side last year, and discovered this one at my first annual check-up. I have had two lumpectomies and a node clearance. My initial reaction (and that of my husband) was that I wanted them both off. My surgeon has persuaded me that this will not increase my chances of survival at all. It doesn't appear credible, but I have researched it myself and have spoken to advisers on this site, and everyone is saying the same thing.
However, how you feel yourself if a very important issue which your doctors should take into account.
Good luck to us all.
Hi. I have also just been diagnosed with TNBC - Stage 1, Grade 3. I had a lumpectomy last week to remove the tumour and am going in again next week as they found another very small lump. I have not yet been offered chemo and there is some question in my surgeon's mind as to whether it will be necessary. I will be going for the genetic testing. I just wanted to understand what people thought about having chemo or not? I have two teenage kids and was sort of thinking I'd chuck everything at this - chemo, radiotherapy and, if BRCA positive, double mastectomy and ovary removal as well.
KLF - you're very welcome, I know when I was in your position I craved positive stories.
Please don't get hung up with the word 'cureable' as most professionals won't use the word.
Treatable & no evidence of disease (NED) are their preferred terms.
The thing is no-one knows 100% if it is or isn't going to come back but neither does anyone know for sure that you are not going to get runover by a bus tomorrow.
Do what you can now to live & enjoy life in a safe & healthy way.
take care x
Sorry that you've found yourself here, you're in the right place I found it invaluable when I was diagnosed.
I too had TN idc, except I had surgery first then chemo.
I had 6 rounds of fec-t my last dose was Christmas Eve 2013.
Get yourself into a monthly chemo thread relevant to the month you start chemo - you'll find it in the going through treatment section of the forum.
My group of 30+ still chat but now in facebook.
Treatment will seem never ending but I just wanted to let you know that there is life after chemo.
I've lost the 2.5 stone that I piled on during treatment (the movies lie - chemo is not a great weight loss program 🙄). My hair, eyebrows & lashes have all grown back, I've been to New York this year a trip that had originally been planned for Dec 2013 & we all know how that ended.
I've just had my 3rd annual all clear Mammo since treatment.
I'm not gonna lie chemo is tough going, some go through it easier than others but you'll get there.
Best of luck x