I think I’m the first one here - found out today that I can’t escape chemo (as much as I really want to). The oncologist wants to start me on 4xEc and then 4xT. Wondering if anybody is facing similar?
I was diagnosed back in Feb with cancer in right breast and lymph nodes. However, I actually went about a lump in my left breast (which was a cyst) and they found the lump in the right one. Blessed in that respect.
I had lumpectomy and lymph node clearance in March. Margins were clear but 5 lymph nodes affected. Oncologist has said they want to treat the cancer aggressively as it is grade 2 and I’m 41. I’ve had a really hard time accepting chemo due to the side effects. I am a single mother and still have 3 of my boys living at home. I don’t want them to see me so poorly and my career and qualifications are now on hold. The hair loss is something that is really upsetting me and even though I would like to cold cap I feel that my oncologist’s reaction to it is that it would be pointless. I’m finding it all overwhelming and going far too fast as I was told that I had to consent to chemo at my appt today as she needed to order the chemo drugs.
@rie1 hey, sorry to hear that you’re struggling ref needing chemo. I’m a few months ahead of on this journey and like you had a lumpectomy & lymph node involvement. Chemo is adjuvant treatment to help prevent reoccurrence.
I’ve had 3 cycles of EC and currently on weekly Paclitaxel. I’ll be having my 4th round tomorrow. The main side affects I’ve had on EC was nausea & fatigue, for the first week of the 3 weekly cycle the nausea was the worst & then it gradually eased. I’ve been able to continue to work & exercise moderately. Paclitaxel is muck kinder than EC in my experience and I’m finding it OK. It hasn’t been anywhere near as bad as I feared thankfully, if it helps with preventing reoccurrence, it’s always worth doing in my view.
It seems that many oncologists are skeptical ref cold capping but please don’t let that deter you. I have seen many women who are documenting their cold capping experiences on socials have success with it. I’d rather listen to lived experiences and successful ones at that.
You will find lots of support on the chemo monthly threads , this is such a great community on here.
I had a lumpectomy and lymph node biopsy for a stage 1, grade 3 TNBC tumour in December with clear results on margins and all 5 nodes taken, however adjuvant chemo was recommended for me due to my subtype and high grade.
After a long three months, I received notification last Monday that my first oncology appointment was schedule for that Thursday and everything’s just snowballed after that. Blood tests yesterday, a further oncology consultation today, then scheduled to start on Friday. Talk about tense! I’ll be doing 3 x EC and 12 x Paclitaxel same as @trixie17.
I was initially very dubious about doing the chemo, especially since there’s no evidence of spread for me, but there’s that little niggle of “what if” in the back of my mind. I’m 47 and would prefer to live the rest of my life knowing I did everything I could to make sure this doesn’t come back and while I don’t think I’ll ever be free of the worry of it coming back, I think going ahead with the treatment will at least reduce that worry for me.
I think the very important thing here in managing this, and with this whole experience in general, is to take one step at a time as it all feels very overwhelming and not really doable when you’re cramming everything that’s going to happen or could potentially happen over the next few months or so into your brain all at the same time!
Also, I, like you, have certain things on hold, which I find quite to very frustrating depending on the day. But my health, physical, emotional and mental, is the bedrock that my life is built on so caretaking that is my absolute priority at the moment.
This was long! Hope it helps and I wish you all the best with your treatment. And make use of the chemo threads. on here. Knowing I’m not alone is definitely half the battle won for me. x
@rie1 so sorry to hear you’re finding this so hard. It’s completely understandable. I was so angry when I was diagnosed - I still am deep down but I’ve come to “accept” and find the positives. I was lucky as my surgery was very successful and as a result I’ve managed to avoid EC which seems to have the worst side effects; I’m “just” on 12 weekly paclitaxel (I’ve done 10 and to be fair the side effects have got worse in the last few weeks). None of it is easy and I can’t imagine how hard it must be having children at home (which I know a lot of women on here do); my two are in their 20s, living away and coping really well.
First thing I’d say is to reiterate using this forum - it’s a brilliant and supportive resource. You can search for any topic, feeling, side effect using the search icon and you’ll always find something! Secondly, can you find someone to talk to such as a a MacMillan counsellor (others are available - depends where you live and what resources are available) or a support group (I don’t use social media but I know women who have good groups on the likes of Facebook). Thirdly, you can sign consents but you can change your mind at any time. It’s your body and only you can decide what treatment you want. It’s the medics’ job to diagnose and offer your treatment but you don’t have to do everything they say. I’ve consented to and then later declined bisphosphonates (zolendric acid) as I had such a bad reaction to one infusion I decided the benefits for me weren’t worth it. Likewise they wanted me to have a PICC line (it makes administering chemo and blood tests easier for staff) but again I declined and am cannulated every week which has been fine.
Have you been given your Predict score? If not ask for it. It will tell you the additional benefit in terms of % chance of non-recurrence in the next 10 years of the various chemo and other therapies they might offer you. I’ll share mine - after surgery (single MX) I had an 86% chance of non-recurrence in 10 years; chemo adds another 2%, herceptin (targeted therapy for HER2+ BC) 2% and hormone blocker 2%. So if I do it all it gives me a 92% chance. I found this very helpful if deciding what to proceed with.
I hope this helps - do join the monthly threads and you’ll find good support and shared experiences. Good luck
Hi @rie1 what a blessing that they found your cancer even though you went in for the other boob. I know it’s awful to find but that can now be treated. Sorry they arent giving you much time to come to terms with things
I am half way through 4x EC and then I’ll have 4x Paclitaxel. I wont lie, it is a lot but it is managable. You have to make sure you take all the antisickness they give you. If you even think, do I feel sick, take a tablet (you will likely have 3 you can take a day)
The hairloss can be the hardest part. Its such a change to the normal you. Do you have long hair now? I had long long hair but decided to get it cut short for my lumpectomy saves messing around with it after surgery. And then before my first EC I had a short pixie cut. My teenage girls have found that gradual change much easier I think. I have been using the cold cap. At the moment my short short hair has been the reason I still look like ive got a head full of hair. It is thinning and I lose hair everyday but I dont need to brush it very often. I dont wash it, only rinse it under water the day after chemo. And so it’s hanging in there quite well. If you have long hair, even cutting just a bit of the length will help you in the long run. Some of the girls have been using hair toppers instead of wigs and they look amazing.
All of the chemo side effects you will want to fight against but you cant control how your body will react to the many drugs. The best thing to do is prepare for the worst and hope for the best. Preparation is key xx
Mouth ulcers can be a problem for people so having a medicated non alcohol mouthwash before you start might help and some mouth ulcer pastilles. You will get changes in your nails so start massaging and putting balm on them now before you start.
Movement is key. You have 3 boys, I’m sure they already keep you busy. You’ll still be able to do those things, it just takes a little more effort than usual
Another thing you want to prioritise is hydration. However you can get fluids in you the better. Water, fizzy water, juice, herbal teas. The more the better.
I’m so sorry you have to go through this but I’m so glad they found it for you. You will soon adapt to the new routine and remember its not forever its just for now. This forum has been so wonderful so im glad you found us too, keep checking in here. Sending you big hugs
Hi @rie1 I’ve just met my oncologist this afternoon and I will be starting chemo with you in about three weeks or so, I’m also going to have 4 rounds fortnightly of EC then 4 of Paclitaxel (not sure but I think thats the same as T? I’m still learning the lingo!) I was diagnosed on the 27th March with hr + 8/8 pr + 8/8 her2 negative stage 2 IDC. It presented as a large tumour they said 7-8 cm with the physical exam, 4.8 cm on the CT scan but got my MRI results today which put it at 3.8 cm but during examinations they say it feels larger which they say may be scar tissue? I’m not sure what from! My tumour acts bigger than it is hahaha. Because of the size they recommended chemo first to shrink it so the lumpectomy will be (hopefully!) less invasive, nothing showing up in the nodes on the MRI but obviously that can change when they check them after surgery. I had thought it would be surgery first and I’d have time to get my head around hair loss and all the potential side effects of chemo and its hit me pretty hard. I also a really angry week where I was just furious, not even so much in a ‘why me’ rage but just felt really angry at everything and everybody! I think its an emotional rollercoaster isnt it, I still feel physically well at the moment so its all very surreal. I’m starting to come to terms with it a bit more now but have good days and bad, coming off the HRT cold turkey didn’t help (I’m 53 in May so chemo will start just before my birthday!) I can’t really give you any advice but just wanted you to know I’m here if you want to chat to someone else going through it. I’m single with no kids so doing this with supportive family and friends but I’m self employed so the money thing is a worry too.
Thanks so much for your reply. My Oncologist said it is policy at my hospital to do a picc line and I would have to sign a form for cannula basically saying I agree to my hand going black if the chemo drugs spill out from the vein. I just feel so bullied into making a decision on the spot.
I am now considering taking anti depressants to try and cope through this. I’ve had previous issues with gynaecology and if my symptoms had been taken seriously then I think my cancer may have been spotted sooner. I have been passed off as the usual ‘it’s just a bad period’ where as the extreme fatigue which they now say was the cancer taking my energy was glossed over as menstrual.
My oncologist was quite flippant about it and didn’t really want to hear about it and said she would refer me to another gynaecologist as a ct scan shows fluid in my womb and a hysterectomy would be a good idea. I’ve spent the last year arguing with another consultant to just have that conversation about a hysterectomy.
They have also found 2 nodules in my right lung which they won’t say is cancer spread yet as they are so small and will be monitored.
I’ve rang MacMillan and am hoping to get a cancer buddy and there is a local cancer and wellbeing centre I can go to for support and wig fitting etc. I’ve gone from being a strong woman to something I don’t even recognise any more
Hi @rie1 I just want to say that the PICC line ive got has been 100% worth it. Having it installed wasn’t uncomfortable at all, it only ached a little for the first few days after and now I barely feel or notice it. I have a cover for it when I’m on the bath/shower which is mildly inconvenient but the benefits far out way that. And I wear arm sleeves when its not in use. You can order 3 for free using a charity called Picc Pals online.
My first chemo, I was sat down and the chemo nurse came over to begin. He was just about to get started when I unzipped my sleave and showed him my PICC line. The look of happiness on his face! I knew right then id made a great choice. Ive had to witness lots of ladies having the cannula and they look so painful towards the end.
You have to do what is best for you and what you are comfortable with. My mum survived breast cancer 9 years ago, she couldn’t stand the idea of the PICC line. Everyone is different. But for me, 10/10 I would recommend
Haha mine too! My tumour was always measured at roughly 1cm give or take a millimetre depending on what method was being used, but after my initial biopsy back in November, it seemed at least 3 times bigger to the touch. In fact, if I laid a certain way, you could actually see it. I was convinced it was rapidly growing but when it was taken out a month later, it still only measured 10.5mm. You’ve done really well to come down from a potential 8cm to 3.8cm!
I know what you mean about the feeling angry too. For me, it’s more like a mid-range annoyance with everything! I think it’s because I’m always dealing with this, but then you still have the everyday life stuff to deal with too. It’s like a full time job on top of a full time job!
