Hi confused - Yep, it's to be taken very seriously.
What's happened with the lovely and young, Sarah Harding, has been a huge shock to us all. But it doesn't mean the same is going to happen tp YOU, though! Always keep that in mind, and try NOT to be knocked back too much by it. Many of us DO survive.
Despite my staying strong and positive, whilst awaiting my results for my first boob lump biopsy (2006), thinking/hoping that it was a harmless cyst/lump, when I was given the news of it being cancer, I literally slid off my chair, onto my knees. Yeh, dramatic!! lol. I have a medical background, so I immediately knew it was serious. Grade 3. And that was a long time before many of the current, more effective treatment regimes and medications. And, despite it being found in my other boob, just under a year later (2007, different type so UNrelated to spread from the first), I'm still here, and physically WELL - Annoying people like YOU-HOO 😆 and trying to support other people on this wonderful Forum. Which I had no idea about when I was going through it. Sooo wished I had done., as I wouldn't have felt so alone with what I was having to deal with. Apart from my Mum, who was worried sick, but an absolute rock.
I think she was more worried than me, and "had" understood the initial seriousness of it, because one of her best friends had also gone through a mastectomy.
Your son, yeh, I get that you don't want or wish to worry other family and people. But. . . they also need to better understand IT and its seriousness, whether Grade 2 or ? I'm wondering whether it would be helpful to give him some leaflets/on-line BCN and other "sound" factual site's info to read about it.
I sooo hope your results are favourable ones, hormone therapy and nothing else further. I'd also STRONGLY advise you to have someone with you at any of your results appointment, if you can. Another set of ears to hear what you're being told - take notes for you even better. As Jaybro says, go armed with a list of questions and make those also known and available to whoever's with you, so that they can ask them if you forget. But if any DO arise AFTERwards, get in touch with your Breast Care Nurse, with ANY queries you have. Don't EVER feel that you're being or making a "nuisance" of yourself. It is what they are there for. It's soo important you hear/know everything you're being told.
Lots of love to you, Delly x❤️x And keep us all in touch with how you're doing, whichever part of the Forum it is, hey ❤️
Hi fellow Ostrich
We each approach it in our own way, whatever we feel comfortable with. I read lower down of someone who ‘read up’ on oncotyping after getting her oncologist’s opinion and I was appalled - but then I thought, why not? It’s her choice. The problem of reading up on cancer is that we don’t really understand our initial diagnosis (that comes with time and experience - plus a touch of boredom?). Our diagnosis changes with each test. I don’t know if I said it below but mine changed from “I don’t think this is anything to worry about” to full mastectomy, 19/21 infected nodes and the full works (plus I’d had a clear mammogram!!) in 4 weeks. So are we reading the right stuff? Most material is outdated, some is opinion or research of a small sample, maybe even a different type of bc AND none of the material can have any idea of how we are feeling. Usually the result of taking a trip down Google Lane is tears and terror.
The best thing to do if you want to know and understand is to ask questions of the right people. You listen to everything being said and ask for clarification. And if you still don’t understand, ask if there’s someone you can talk to. This is almost a new language. You take along a list of questions. I found recently that presenting the oncologist with the list means they address each question and I haven’t left anything out.
I made a conscious choice to play ostrich first time and just get on with it because I had anxiety issues that could have taken over. Can you believe that, diagnosed Autumn 2018, I got to 3 months into my treatment for secondary bc (yes, an unlucky statistic, that’s me, April 2021 - didn’t even have the decency to give me a breather) I didn’t even know that one of my tumours was triple negative. Tbh, I’d read it on here with little idea of what it meant - till now when it comes and batters me on the head and I understand the full implications. The one harder to treat, which explains the secondary bc - some bug*** escaped all that chemo and radiotherapy and camped in my eye socket! But Ostrich got me through the initial 9 miserable months of treatment first time round. I just drifted with the oncology team. Knowing more wouldn’t have made a jot of difference. This time is different, I’m asking more questions; if i see a different oncologist at clinic, I ask the same questions so I can compare answers.
Stage 2 is OK. Actually its bloody awful but on the scale of 1 to 4, it comes out as ok (Sarah H incidentally had stage 4 from the outset and had secondary spread so there is NO comparison. You may not need chemo. You’ll almost probably have radiotherapy which is ok for some (I thought it was a doddle) but some people have bad experiences. Hormone positive is good - no triple negative worries for you - but hormone therapy may bring side effects. Don’t put up with them. Nag the team till they run when they see you - there will be a brand or a type that will work for you. I’d just got it sorted when I got a new diagnosis and they took me off it!
If it helps, neither of my brothers has once enquired after my health. They don’t do cancer - too scary. And be wary of the well-intentioned who don’t acknowledge your right to your own feelings. We’re not brave, this isn’t a battle to be won or lost, we just do what has to be done, some more easily than others. Each case is unique. Each experience is unique. Comparisons therefore just don’t work. You’ve been diagnosed with a terrifying disease which gets a very bad press and everyone knows someone who…and they are so keen to tell you. Don’t know why. Let it drift over your canopy of ostrich feathers. YOU come first now and you make sure those who need to know that do understand (my husband is running the house now - I do the money and do the online shop - a life of leisure and 18 nasty pills a day that are working. Yay!)
I hope your results don’t change anything and you don’t get the full works. If you do, it’s all manageable (if I can do it, anyone can, believe me). If you don’t, that’s good fortune/good timing catching it early enough but it doesn’t make you a fraud, nor does it undermine any profound fears you may get in the middle of the night. You’re one of us now and you’ll soon see how very different we all are.
Put the waffling down to 18 months shielding (yep, got to wait for that third jab now). God, I miss the world beyond that blessed oncology department! All the best,
i actually love this reply, because I felt also you could’ve been talking to me!
I’m day 5 post op and I guess my emotions are beginning to appear whilst I await my results.
Up until now ive been EXACTLY the same as the original poster. I’ve felt like this is way too much fuss, especially as the professionals are so very matter of fact about everything so far. I’ve been super confident that this is just a common, routine operation that ive almost forgotten how serious cancer gets. AND THEN there I was numb from painkillers and watching tv from my own comfy bed and in popped the news about Sarah Harding.
That as you so rightly put it pulled my ostrich head right out of where its been since the diagnosis if I’m honest.
So now what do I use to get me through to results day? This bloomin forum that’s what.
I need to actually educate myself with all the terms and phrases that I will have said to me next weds!
up until now all I really know is that my cancer is stage 2 and they have taken the lump and my lymph nodes .. I also see from my notes that it’s hormone receptor positive and I may need some hormone blockers
I constantly worry about how everyone else is handling things. Especially my son who has not been to see me since the weekend before diagnosis … I think this ostrich thing has been passed along so he needs a kick up the backside as well I feel.
I hope you’re doing okay?
Hi again girls
I just wanted to "Thank You" for kindly taking the time to reply to my question and fill me in more. Especially as you've so much else to think about, deal, and cope with.
I can soo understand you're decisions to remove and cover ANY possibilities of recurrence, as much as can be with treatments.
Yes, I've always been aware that even if your nodes are clear, it doesn't rule out the possibility of spread, as the nodes can sometimes be by-passed by the *bleep*, especially with grade 3 and upwards.
Things/info/treatment has so changed since mine. I only found out in the last year, that hormone treatments are now being used as a neo-adjuvant, to try and shrink tumours, prior to further treatments. Amazing findings.
DAB72/Dawn - My Forum presence, through the years, has been mostly from a supportive "Long Term Survivor" position - YEY!!! And I only say "mostly", because I was at one point going through recon thoughts and procedures. "Thanks" for your thoughtful and kind questioning concern as to otherwise though 😊 I reeally appreciate it, darlin.
I wasn't aware of this Forum when I was going through BC. Sooo wished I had been. It's an invaluable source of support, info, advice, and often many a much needed giggle too 😆 ❤️
Keep kicking that BC BUTT girls. Much love to you ALL, Dellywelly xX❤️Xx
Thank you too for your reply xx
I too wish you all the best. I’m due my second round on Friday. Bloods today. Feeling slightly anxious but that’s normal I think. Just hoping that it pans out similar to the first round 🤞🏻
Take lots of care of yourself, you’re totally worth it 💓 Love Sarah xxxx
I can only speak from my experience in all this so far .. My cancer, after biopsy was graded 2. After surgery it was re-graded to a 3. It was 3cms and I had calcifications that took total area of removal to 7cms.
When I saw my oncologist initially he thought that due to grading it would be likely that chemo would be recommended. However, he suggested that my tumour was sent to the US to be Oncotype tested. The scoring of this would give a clearer picture. It tests for % likelihood of reoccurrence and also whether or not your particular cancer is likely to respond to chemo.
My score came back at 18 which is in the intermediate range (16 - 25). The oncologist was happy with my score and said no chemo required in his opinion. I did some reading up and found the Tailor study. This reported that patients under the age of 50 with an intermediate score may still benefit from having chemo.
This put my head into a bit of a spin! Hence I sought a second opinion. Oncologist No2 said that although my risk of reoccurrence was already low, chemo would potentially lower it some more. My lymph nodes were clear but I was still left feeling very anxious. The ‘what if’ played very heavily on my mind. No-one is able to guarantee that any rouge cells haven’t pinged of around your body unfortunately. Possibly in your blood. Chemo was still being offered to me and on this basis, I made the personal decision to have it. It is a very personal choice and I know many others would have been able to close the box as it were and move on. I didn’t feel mentally able to do that.
I had said, from diagnosis that I would take whatever was offered to me in order to minimise my future risk as much as possible. When it comes to cancer, nothing unfortunately is guaranteed but I want to come out the other side knowing I’ve thrown everything at it.
I hope this helps in answering your questions. Sending my love to you.
Hi @SlightlyBewildered ,
thank you for your reply.
well done to you for looking into your oncotype score more fully and going with your gut. I still feel slightly awkward at having treatment when my cancer is ‘gone’ and I know others having chemo are still trying to fight their cancers but in hindsight I know I have made the right decision and had I decided not to have it I would now be regretting it. I’m week 2 of cycle 2 and like you having a total of 4x TC before radiotherapy and Tamoxifen. I’ve felt a bit rough for a few days but generally found the side effects manageable. I wasn’t able to have the cold cap and had to have my husband shave my head the day after my 2nd treatment as the fallout was just too much. I’m getting used to no hair and have some nice scarves and a fairly decent wig but have had a couple of wobbles and a few tears.
wishing you all the best with your treatments and fingers crossed the cold so works for you. All the best, Dawn
thanks for your reply.
With regard to your questions, I too thought that chemo wasn’t necessary for stage 1 with clear margins and no node involvement but having been graded as preliminary grade 2 from my biopsy which then after surgery and subsequent pathology on the removed tumour, was upgraded to grade 3, I was then told that based on statistics I might benefit from chemo. I could at this point have said I didn’t want chemo and just gone ahead with radiotherapy which is standard when you have a lumpectomy. However with grade 3 they offered me an additional test on the genetics of the tumour which gives a risk score based on the genetics of tumours from thousands of patients and whether those patient’s had recurrence with in a certain time period. The score places you in low or high risk. If high risk the recommendation is to have chemo. Mine came back high so I went with the chemo but I will still have radiotherapy afterwards and Tamoxifen. There are some other similar genetics tests that also give a intermediate score which makes it a little more difficult to decide whether to go ahead with chemo or not.
I hope your surgery has kept you well since but if you are visiting this forum due to further diagnoses I’m very sorry and wish you well with your treatments 💐
best wishes, Dawn
Hi DAB72 and all you other brave women.
I take my hat (and "bra" had I been wearing one! 😄) off to all of you undergoing, or having undergone, Chemo.
DAB72, sweetheart, I sooo hope you, and everyone else, are managing and coping okay with all your treatments.
I have a question, that has resulted from your initial post info on here, and from another recent post on a different thread. So perhaps you, or any other of you, who have mentioned the same, could kindly answer this question for me.
Like yourself, I always thought if your tumour site margins were clear, and your nodes were also clear, that chemo wouldn't be necessary??
I'm somewhat out of touch with current treatmentment policy, both my BC experiences dating back 2006 and 07. The 1st grade 3 and both dealt with by mastectomies, which also meant having to have full ANCs (standard practice in those days), as opposed to me choosing both lumpectomies and the then required rads. My choice of mastectomies was to "avoid" rads, and protect against any possible skin damage for recon purposes. Both had clear margins and clear lymph nodes, so no chemo was required for either. Again, as was standard practice/policy back then.
So if your margins were clear, and your nodes were also clear, Was your recommendation to have chemo, based on the fact that your tumour was Grade 3?? Or was it also due to some other factor(s) as well??
I'm not asking, with ref to my own treatment back then, and any possible spread since. But purely out of interest to update myself on current policies.
Lots of love to everyone, Delly xXx
No way are you a fraud hun. Grade 3 is pretty serious and yes they are doing it as a precaution in case a few stray cells have gone elsewhere. I am awaiting chemo. Grade 4 with Liver mets-all at the same time-it is aggressive-it just has to be done. I feel well at present as no symptoms re the liver. BUT it is there-as someone else said-it is mostly unseen. We ARE still poorly however. I think the cure will be worse than the disease as since my surgery and ensuing complications I am doing okay. But we just have to do it to survive.
I have decided not to bother with the cold cap too. It's just more time spent in the hospital, it sounds rather horrid, and With the Docetaxel I will be on, hair loss is guaranteed. Therefore I am dubious about the benefits. I shall just let things take their course and have ordered some lovely per-tied bandanas from Anna Bandana. You will find them easily with Google.
I also had long hair. My daughter in law cut it into a stylish short bob for me-which I love- and I donated my hair to Little Princess Trust. It won't be such a shock then when it starts to sged as there is far less of it. I will go and choose a funky short style of wig! I think losing my eyebrows and lashes will be worse-it just changes your looks quite dramatically! I am armed with a microblading pen-like a liner with 4 tiny nibs-and a W7 Eyebrow kit with stencils! What kind of a mess I will make of it I can't imagine as it's not something I ever needed to do! As for lashes-I may try the magnetic ones. No glue involved. They attach to an eyeliner you apply first which has tiny magnetic particles in it. Worth a try for "going out". I think it may help us feel better if we can look kind of normal?
Anyway best of luck with it. You are in the right place here to get info, share your worries, or just have a bit of a moan. I am all genned up and ready for my chemo which starts 8th Sept but have really no idea what it will be like or how i will react to it. We are all different.
Take good care of yourself. Jane.x
I could have written your post too. I had successful surgery (Grade 3 plus a large area of calcifications) plus no lymph node involvement. I had a Oncotype test done and my oncologist said my score (18) was low and that he wasn’t recommending chemo. Although when I had my first appointment he’d said he thought given size and grade it would be likely I’d need it. Initially I was really pleased - yaaay no chemo. But then I did a bit of research and discovered that my score fell into the ‘intermediate range’ for my age (48). And that chemo could be seen to have some benefits to lower reoccurrence. This sent me into a real state of anxiety as to what to do. Chemo was still being offered but I felt that I would be wasting NHS time and money and taking the place of someone who actually needed it. I ended up seeking a second oncologist opinion because I just couldn’t let go of the idea that if I didn’t have it and it did come back I’d never get over it. I’d had in my head from diagnosis that I would have the full belts n braces. I know some would have been able to just accept the score/oncologist views and close the box but I really, really struggled. The second oncologist (female) was amazing. She didn’t give an opinion either way but she let me talk through my fears and one thing she did say was that by having chemo it would reduce my risk of reoccurrence slightly more. I’m a single mum and just want to do everything in my power to beat this thing once and for all. So, I decided to have chemo and as soon as I’d made the decision I felt it was the right one. I know that if I’d gone straight to radiotherapy I’d always be looking over my shoulder. Oncologist No.2 said I’d regret not having it but once the dust settles I’ll never regret having it. I still feel a sense of guilt though but I know I shouldn’t. If there was absolutely no benefit to me it wouldn’t have remained on offer. I’m one round into x4 cycles of TC. My first round went ok. Treatment day fine, first week not great but totally manageable. I used the cold cap - still too early to gauge whether it’s effective or not. My hair is long, I didn’t have it cut before I started treatment. I just figure I’ll deal with things as they happen. I have my next round this coming Friday and I’m hoping it will pan out the same way.
Sending my love to you all. It was really helpful reading all your posts on this. Thank you. Sarah xx
This is the first time I’ve heard this about the cold cap so not really in a position to comment but it might be worth talking to your nurse about it or asking your oncologist again. Unfortunately, in my case I haven’t been able to use the cold cap after all as it was difficult to get an appointment to include it and rather than waiting I decided to just get on with starting the treatments; I had my first on 23rd. I know that while it can be very successful for some there is no guarantee of success so didn’t feel the wait was worth it.
I hope you are able to get some clarification and feel you are able to make an informed choice.
Although I’m really not looking forward to losing my hair, it will come back and in the scheme of things will be for a relatively short time. There are some very pretty head coverings out there and some good wigs so I figured I’d get by.
Good luck to you and I hope your treatment goes well!
I hope you don't mind me jumping in here...but I have a question regarding the cold cap. I am quite anxious about losing my hair so originally I was definitely going to try the cold cap. However, a lovely lady whom I've recently befriended who is several weeks ahead of me treatment wise told me her oncologist warned her against it. She said that any rogue cancer cells that may have made their way to the scalp or head might not be zapped because the cold cap would make the chemo ineffective at that point. Any advice or points of view on this..
All the best to you with all your treatment....It is all required to give you the best chance of a long, healthy life. You are most definitely not a fraud my lovely xxxx
Mummybirch ❤️ Please do look at donating your hair to little Princess trust, found it helped so hair didn’t go to waste and helped a child ❤️ You are doing amazing and think most of us had a cry when our locks were chipped but it did help a lot knowing it was going to help a child ❤️ Just a thought ❤️😘💕💕✨✨Shi xx
hi, I've just joined this forum and read your message. Reading your post makes me feel as if I had written it. I feel like I'm in exactly the same position as you. I am due to start my chemo in a couple of weeks and am also going to try the cold cap but very nervous about the whole situation. My daughter (she is a physio therapist) advised me to try the cold cap as shes heard it can have a positive outcome. I have very long hair which I've had all my life but in about a week I shall be having it cut very short. A. To make life easier for myself and B. If for me the cold cap doesn't work I personally would find it very emotional and hard to have hand full's of hair come off in my hands. I wish you all the best and hope your journey stays smooth and carry's on being kind to you emotionally and physically. I will take each day as it comes and hope I can stay strong through this next part of the journey too. all the best x
@DAB72 - thank you for your kind reply. It’s definitely worth trying the cold cap, I’ve read lots of success stories and have a friend who kept her hair using it. I wanted to share my experience in the hope that it will help you keep your hair. Even if it doesn’t work 100% you may find you keep enough to make it worthwhile. Don’t be too alarmed if you see hair falling out even if you have used the cold cap, it doesn’t mean it will all fall out.
I didn’t work during chemo as it hit me pretty hard, but as you say it affects everyone differently. It also depends on your job of course. If you can work from home, online, that would make things easier. You will be warned about being careful mixing in crowds etc as chemo will knock out your immune system for some of the time, so that’s another factor to consider. But at the same time trying to distract yourself and keep some sort of normality is worth considering. It’s a very personal decision - I’m not sure my ramblings help at all, so if I can help further please do ask!
@Evie-SThank you so much for sharing your experience; I’m sorry the cold cap didn’t work as well as you hoped. I’m not getting my hopes up too much but thought I may as well at least try it.
I plan to join the monthly chemo thread but thought I’d wait until I had a start date.
I don’t know if you’re of working age or retired but what are your thoughts on continuing to work between treatments? Not sure if I’m being realistic thinking I can go to work in maybe weeks 2 and 3 of each cycle? I guess every treatment plan is different and the side effects probably vary wildly between individuals but I wondered what most people do when it comes to their job?
thanks again for your reply
@DAB72 - I just wanted to jump in on this thread to discuss your question about cold cap. I tried it for 2 sessions - it didn’t work very well for me so I gave up, but I’ll share my experience in case it helps it work for you. First of all, yes it’s very cold but it’s the first 10 minutes that are hardest. If you have something to distract you then I think you will manage it - I think I watched some daft video/show to keep my mind off the cold. After that it’s just cold but you become used to it - obviously not everyone can stand it, it’s very individual but I was given that tip and it worked for me. The other thing is to make sure that the cold cap fits properly, I don’t think mine did and as a result I lost hair on top of my head and it looked rather odd, so I stopped. However, it did mean that I didn’t lose all my hair and so I left it long enough so that I still had some to poke out from under my scarves - again that was my decision and it suited me, but you should do whatever helps you most. Definitely keep it a bit shorter though is a good idea. Last tip, take along conditioner with you to put on your hair before you put on the cold cap - not sure why, but maybe it helps it fit better. Oh and take a hat with you for when you come out as your head will be cold - I learned that from experience and leaving the hospital on a cold winter night!!
My very best wishes to you as you go forward. I hope you find lots of support on here - you might want to join the monthly chemo group so that you can all help each other as you go through it. Let me know if you can’t find it and I’ll try to send a link. Alternative, I’m happy to answer any other questions if I can. Evie xx
I have mixed feelings about your post. Part of me thinks “Good for you”. But then I feel you’re playing ostrich, like I did. Your diagnosis has been changed to grade 3. That’s pretty serious, but then all breast cancer is pretty serious. It’s the nature of cancer - totally unpredictable and therefore essential to throw everything at it if it may help. So you’re definitely not a fraud. If you’ve handled everything smoothly and that makes you feel a fraud, that just makes you lucky. Chemo won’t be easy but you may be lucky and sail through it. You’re still no fraud. There’s simply no predicting how things will go. I’d suggest you stop trying to make things easy for people around you by reassuring them you’re fine and be honest with yourself. Are you avoiding the reality of your diagnosis and treatment? That’s what I did and it got me through treatment. An effective strategy - but you’re still ill. Be kind to yourself, your cancer is unique so no comparisons- and never mind what anyone else thinks x
you are definately not a fraud....they don’t recommend chemo lightly....even when surgery gets clear margins and no lymph involvement...there is still the potential for unseen cancer cells to travel via the blood around the body.....so the chemo will be a belts and braces approach.....reducing the risk of a recurrence later down the line.....like you say precautionary.
i was initially told just rads but then ‘upgraded’ to need chemo.... when you are feeling fine ..... it does seem like a big deal, I agree.
hope all goes well
Thank you for replying.
I guess I just thought the lump would be dealt with and the radiotherapy and ongoing hormone blockers would do the rest and a few weeks down the line no one would even know about it instead it’s turning into a big song and dance lol.
Id be interested to hear about your experience with the cold cap as I’m planning on having that too. Did you get your hair cut shorter before hand? Mine is shoulder length without layers and I’ve been advised to shorten it a bit but not sure how drastic I should go or if I should layer it so the weight is lessened? as I’m hoping it won’t fall out I don’t want to change it too much really.
Ive also heard that it can be quite uncomfortable due to ‘brain freeze’ and some people can’t withstand it so stop using it after the first treatment. Would love to hear your thoughts. Thank you
Hi was in similar position two years ago you are not a fraud chemo is only given when necessary ....because it is preventative maybe or maybe just lucky I wasn’t ill apart from fatigue and even kept most of head hair due to cold cap . But was still 12 treatments and four months to get through. Good luck ! X
Hi, I’m new to the forum and just wondered if I am the only one who feels like a fraud?
Having successfully undergone a WLE and SLN biopsy to remove a 16mm, Er/Pr positive , Her2 negative IDC, with clear margins and clear lymph nodes, I just feel my situation is so insignificant compared to so many women out there. With my preliminary grade 2 diagnosis being upgraded post-op to grade 3, I was offered a Prosigna test which showed that I would benefit from Chemo so I am now waiting to start treatment in addition to radiotherapy and 5-10 years of tamoxifen, so it’s a real belt and braces approach.
I’ve always thought (wrongly) that if someone has chemo it’s because the cancer has gone to the nodes or spread elsewhere and they are in a life threatening situation, so I’m feeling like a bit of a fraud considering how successful the surgery was. I feel I should tell everyone that it’s purely a precaution and that I’m fine yet I know the treatments themselves won’t be easy. It’s like the treatments are creating a bigger drama to my diagnosis than the cancer itself…..does anyone else have feelings like this?