Hi daisy, I had a WLE and SNB august 2014. My lump was also 9mm, hormone+, her2-, grade 3, no node involved. I was borderline for chemo because of the grade. Although I asked to go on the trial at that time for the oncotype dx test, I wasn’t allowed, and my oncologist wouldn’t sway me either way re chemo. After a lot of thought I decided to go ahead with chemo. I have a 10 year old and needed to make sure I had done all I could to stop a reoccurance.
Chemo is definitely hard going, but it’s doable. I was suppose to have 6 x Fec but unfortunately I became very ill after the 4th and was advised the risk of continuing outweighed the risk of stopping. I was really disappointed to stop early and even after all my complications, I have no regrets in my decision to have chemo.
I based my decision on the fact I am a worrier, and if I hadn’t had chemo I would always have worried that a tiny rouge cell had escaped, I wanted a belt and braces finish. If you do decide to go ahead I would defo join one of the monthly chemo threads. The support from ladies in similar boat has been my saviour. If you need any info please get in touch. Hugs to you xxx
For what it’s worth: I had to face the same decision 3 years ago. (See earlier post) WLE. SNB - clear.28mm Grade 3. ER+. Her-. It was a horrible decision to make, but the fact I wasn’t told I definitely needed it, combined with the information that it wouldn’t be a guarantee of stopping the cancer coming back, gave me the confidence to refuse chemo.
Everyone has to do what’s right for them. Only you have to live with your decision, but despite having spent the last 3 months being investigated for liver mets (now confirmed as gallstones and not BC related) AT NO POINT DID I REGRET SAYING “NO” and getting on with my life, because I knew that even after chemo, I could have been in the same situation!
I talked to the BBC helpline, Macmillan helpline and anyone else who’d listen. Nobody could advise me, but talking and asking questions helped me make my own decision and live with it.
Good luck whatever you decide.
If it has spread to your nodes then there is not much point to the ONC test because there is then a higher possibility that some cancer cells have slipped into your bloodstream and the little buggers may be floating about looking for a new home. That is why they recommend chemo pretty much for all if it has reached the lymph nodes.
Mine had not spread, but the bogger of my two lumps was HER2,+ and that is also a contraindication for the test /no chemo option because is is way more aggressive and likely to spread than just Hormone positive.
There are days I wish I had braved the no chemo version.
Also days when I really wished I had opted for lumpectomy versus bilateral mastectomy, but I had lumps both sides and my surgeon was wary of radiating both sides. With the mastectomy I avoided radiation therapy at least.
But I am a single parent of a then 11 year old, so went the full monty just to be sure.
I had no doubt about opting for bi/mx with DIEP flap recon. Researched the hell out of all options (had chemo first so lots of time to think about it)
Had to go to London for surgery though, as my local Surgeon in Hampshire refused to do it simultaneous even though DIEP flap result is better if you do… (plus no dreaded expanders!!)
Bloody amazing procedure! (Available on NHS…Charing Cross specialise in it)
But I ended up having a load of issues in my recovery, and am not happy with the result (GREAT TIP: WRITE ON YOUR CHEST WHAT YOU AGREED TO BEFORE YOU GO INTO SURGERY!! That way I would have got the D cups I had agreed on intead of the H cup momster moobs he gave me!!)
Currently on an 8 mths waiting list for revision survery! Not ideal.
Hopefully on e revision surgery is done amd I have my flowery tattoos I’ll be 100% happy. Just been a long tough recovery. (My friend had single MX/DIEP recon by the same team and had ZERO issues, so I think I got unlucky tbh. Smaller boob recons seem less problematic.)
MX with simultaneous LD Flap recon seems less problematic, but every option has pros and cons.
Chemo was not anything like as bad as I expected.
Day 1/2 Felt wired (lke I’d had way too much redbull)
Day 3/4 felt OK
Day 5/6 crashed… just felt incredibly tired. Just needed to lie fown and close my eyes (seriously, I have had worse hangovers!)
Day 7/8 Iiterally woke up feeling completely fine.
Then had 2 weeks of normal before next cycle.
Each cycle the ‘crash’ bit extended a day so by the end it lasted a week, but still just super tired, not ill.
I had EC every 3 weeks for 4 cycles
Then had the ‘T’ bit (Taxel) weekly (Pacitaxel, not Docetaxol) over 12 weeks (splitting it out is gentler than having FEC-T in 4 cycles with Docetaxol.)
I had to work throughout chemo, so was critical I was not wiped out.
Ask if you can do this. Push for it. I had an easier time than my buddies on FEC-T, although they were finished in 12 weeks and I was 19. Swings and roundabouts!!)
I am partway through the same chemo. I’ve had 4 x EC fortnightly, and so far had 7 of 12 weekly Paclitaxel. I’ve commuted to London and worked throughout only having Fridays (chemo days) off. I’ve not been nauseous once. I had loads in my lymph nodes, though thankfully not spread elsewhere so even though they removed them, having chemo was a no brained.
Unfortunately I was unable to have any sort of reconstructure so can’t give you any info on that.
I was seld employed too, I think that was a contributory factor for me being given Paclitaxel (it is called ‘Taxol in Velvet Gloves’
I worked from home throughout. Lits of conference calls and web sessions!
My memory was shocking though (still is!) Chemo brain is like Baby Brain!!
I did get gradually more tired/less energy during the Pacltaxel
But NOTHING like I had expected.
16 of us in my chemo gang (we set up a Facebook closed group after meeting in a thread on here (Best idea ever for support during and after chemo!)
Of the 16 only 2 women suffered ANY nausea.
One was anorexic so had no reserves (I ate my way thru it! Put on about 2 stome but didn’t feel sick at all! And I thought chemo made you skinny from throwing up! ? Not any more)
The anti emetics they give you are amazing nowadays.
EMEND is the big one that you take at home in the morning of chemo then took again the day after.
You are sent home with a big bag of drugs to help you after chemo and stop you feeling sick.
STEROIDS: For anti nausea/infection (I stopped taking these cos I got too wired!)
In addition to Emend and Stetoids I had 3 types of anti nausea tablets to take at different times during the day:
Ondansetron
Metoclopramide
Levopromazine (was meant to be in case of severe nausea at night, but I took it as it made me sleep like a baby for those first 2 days after! Nurse was not happy with me ?)
No-one else in my gang got given Levopromazine.Think I did because I suffered really bad morning sickness when pregnant so they thought I may suffer. I didn’t ?
PM me if you want to chat. I may have some useful i fo I could email you… I did a LOT of research!!
See now on the taxol I bring home no medication at all. I have one antisickness before the chemo (domperidone ) and then a steroid Iv and a piriton one in case of allergic reaction plus a ranatidine one to stop possible heartburn . Then the paclitaxel then I come home.with nothing till the next week…and to be fair I’ve not needed anything.
After having a lumpectomy with clear boundaries I was told of cancer cells in my lymph nodes positive to Herceptin. I have undergone 4 chemo sessions and 3 weeks of radiotherapy. I am having 3 weekly herceptin inections, am on Letrozole for 10 years and started 6 monthly Zometa treatments for next 3 years. I cannot complain about my NHS treatments and the staff are so supportive and caring.
However, I am not sure if i knew before chemo what I was going to go through, I would have undertaken it. I found it gruelling, after each session I ended up in hospital and felt wretched throughout. Others I have spoken with haven’t had many side effects and coped better.
You just don’t know though how things will turn out. I am just hoping that by following my Oncologist’s advice that it is all worthwhile. The treatments are very expensive for the NHS so they must be sure that they are worthwhile and save lives.
Sometimes you feel like you are between a rock and a hard place. Sometimes you cry . at other times you try to put a brave face on. Talk of cancer and all the medical appointments tend to take over, so I have tried to keep up seeing friends and try to be “normal” as much as possible.
In cycle 4, I build up tingling fingers on top of electrical feeling fingers. I almost took my eyeball out instead of my contact lens. My onco suggested a10% decrease, she was afraid it may become permanent. I immediately turn her down. Even 1% improvement in survival rate, I still won’t give up.
today is my 6th round infusion, I have no tingling fingers in cycle 5 and only some electrical feeling. Every time i take off my contact lens I will make sure it wont come out with my cornea though 1 or 2 times almost. Had an apointment with my replacement onco.(my previous left) 3 days ago, I was told they usually won’t change the dosage amount and especially Taxol is the main drugI I won’t give up unless my onco make the brake. …MelMel
By the way, today is my cycle 6 chemo day, such a surprise, heart palpitation has been included in the nurse follow up side effects/reaction pre-check list. They said that heart palpitation is a serious problem and if too high it may cause stroke. They are instructed if palpitation happens during infusion, they may stop the infusion immediately and apply medicine (they sort of mentioned IV high dose steroid). Infusion will then resume later on the same day or the next day.
My oncologist tends to believe I had reacted to Taxol and not stress out. when my pulse rate was raised up to 17x, I was sitting in the chemo chair, reading magazines and was quite relaxing