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I had a WLE and SN two weeks ago and when I went for my check up I was told they had got clear margins but it was 50/50 if I would need Chemo.

This was a bit off a shock as I had been told if my nodes were clear which they were I would only need radio + hormone tablets

My consultant know that Chemo was the last thing I wanted as I have fibromyalgia and unexplained anemia which I have to have blood transfusions ?

I’m scared after reading all the info about the test that I will fall in the intermediate range and will have to make a decision that I’m not sure I can

Im freaking out still in a lot of pain and have to return to work in a week so I can’t really afford what could be 6 months off


Sorry for the rant

Any advice


Hi Sarah
Can I ask…do you know what grade your bc was?
Mine was grade 3, so it did mean chemo.
Apologies I don’t know much about your other health issues so I can’t comment on chemo in relation to that.
Personally, I took on all treatment that they offered.
When it comes to work, it is possible some of the time, but you’ll only find that out as you go along.
Best wishes
Sue xx

Hi Sarah
Unfortunately it’s not until they do surgery, that they know exactly what they are dealing with. Whether you have chemo or not depends on grade, size and the other bc make-up ( the HER and ER part), lymph node involvement etc. You will be sent a copy of your results, and also your gp will get a copy too. Your treatment will be tailored exactly for you and your bc.
Also, mine was similar in that they thought I had two lumps, but as it turns out it was one. Mine was lobular, and apparently was in the shape of a figure 8 hence them thinking it was 2 lumps.
If you need chemo, it is very doable. Not nearly as bad as you think. And they will take into account any other issues.
Hope this helps. Let us know how you get on.
Sue xx

Hi otter65, I can understand your concern. At first I was told mine was dcis with microinvasion so would just need radiotherapy and hormone therapy, when they did the lumpectomy I was also told that it was an Er+ grade 2 tumour and That they would run further tests to see if I needed chemo. I was in real shock and it frightened the life out of me.  Apparently the biopsies don’t always tell the real story and they run the oncotype dx test to see if you would benefit from chemo. Unfortunately mine was right at the top end of intermediate (I.e. Not sure if I’d benefit or not) but they advised chemo and I had my first session this week. I really am in two minds with whether it’s really necessary (I mean they were happy with the margins and there are no nodes involved) but at least I know I’ve done everything I can to stop it coming back. I don’t want to have to go through it again! I hope this helps, but I know the waiting is awful, that’s what I found really hard. Hopefully your results will come back that you don’t need it, but if you do there are plenty of us on the forum going through it who can provide tips and support. 

Oh otter, it’s awful that everything all happens at once. I hope you managed to get through yesterday ok. I didn’t have a wound infection but did develop a haematoma 4 weeks after surgery which was another stressful experience! I kept feeling like I was taking one step forward and 3 back! I then worried that my treatment would be delayed but all the waiting for tests gave it time to sort itself out, so hopefully that’ll be the same for you too. 

Hi otter
Just to give you on idea on timescales…follow on treatment after surgery is started within 12 weeks ( on average it seems to be 6). Chemo can vary depending on how many cycles you have and that is determined by your bc. I only had 4, and with no delays, managed to complete it in 12 weeks. This will be the minimum. Most seem to have 6 cycles, which is every 3 weeks. Some can even have 8! If you pick up an infection, sessions can get delayed until your body is ready. If you then have radiotherapy, this takes place 4 weeks after and can be 3 -4 weeks.
When it comes to work, it is possible to do some on your good weeks, but its hard to know how you’re going to be until you start. Some work is not possible eg teaching, due to the risk of infection.
Hope this helps
Sue xx


6 months does seem along time, however there will be ups and downs along the way. Generally the first week is challenging and then you gradually pick up, so you will spend a week or 2 ok. The first cycle is the hardest because its such a steep learning curve. Then you sort of get into a rhythm and you can plan for your good days.
When the time comes, I hope your daughters can help you with that first week. Unfortunately men don’t seem to know what to say or do in these difficult times!
Let us know when you start and joining the monthly chemo threads are a good idea, because you can chat to others going through the same as you.
Best wishes
Sue xx

Hi otter, sorry to hear you’ll need chemo your experience with this is very similar to mine. My tumour was 1.8mm but had a lot of dcis so they took 2.6mm to get a clear margin. Mine is also a grade 2 and er+ They had issues with my her2 test which meant they needed to do further testing and so more delay and then finally the oncotype test which came back with a score of 30 so chemo and radiotherapy and hormone treatment for me too.

All I can say is the waiting is the worst, but you should ask if you can have your flu jab and arrange a visit to the dentist (these were things I could’ve done whilst I waited but didn’t know until it was too late). I had my first treatment 2 October and was lucky not to suffer too much. This has meant that I have been able to work from home this week and plan to go into the office next week (so just 4 days off sick this cycle).


Please do think about joining one of the monthly forums, I post mainly to the October starters forum but I also check out the September one too as they are slightly ahead of me.  I find them really invaluable as they give their experiences, tips and words of encouragement. There are also others that have other health issues too so it might help you prepare for what’s ahead (as much as you can). They are all a great bunch and can also give you support! Good luck and let me know when you are due to start.

Hi otter, the waiting is the worst. I was like you and very worried (I think everyone is, even if they put a brave face on it). I’m sorry the forum upset you, if you would like, you can continue to post on here or private message me and I will pick it up. You can ask me anything you like if it will help alleviate your concerns. I’m not an expert but I’ll help if I can.

Hi otter, also meant to say that I seem to be one of the lucky ones that SueC is referring to. I had very few Side Effects from the chemo and was back working the beginning of this week, I’m just keeping my fingers crossed that it stays that way through the rest of my treatment. 

Yes take one day at a time. Sounds like your work is very supportive which is a good thing and means you have one less thing to worry about!  The hat sounds like a good idea. I crochet rather than knit and am also planning on making a few hats too. Yes let me know when you get your start date, have you already had your appointment with your oncologist?

Ok so you have a few weeks and you’ll be starting quickly after the onco appointment so at least you won’t have more waiting after that. You sound you’re on top of things with regards to flu jab and dentist. The oncologist will go through what sort of chemo you’ll have, how many cycles you’ll have and the timeframe. I’m having 6 rounds of fec and they give it to me once every 3 weeks. Yours maybe different but don’t worry about that lots of people have different treatments, I think it depends on lots of things like type of tumour, age, general health.


They might also offer you scalp cooling/ cold cap, but not all hospitals do it and it might not be suitable with your fibromyalgia. I’d never heard of it but basically they put a freezing cap on your head. The idea is that it may help you keep your hair, you might want to google it to find out more to see if it’s something you want to consider or request. Its not without its own issues, I did do it and I didn’t find it that bad. They will also give you a blood test to make sure you’re well enough to start chemo. I also had an ecg too But I think it depends on the type of chemo you’re having. I hope that helps a little? Whilst I was waiting to start I felt very unstable about it all so I bought a few things to help me prepare for chemo, but I’m a real planner and like to be in control. In the end I didn’t don’t need half of it but it made me feel better at the time, like I was doing something!

I too felt very out of control and unprepared. I would recommend investing in some sea bands/ travel bands. I got mine in boots for £8 but you may be able to get them cheaper somewhere else. I don’t know if they work but quite a few of us on the October forum have worn them and seem to have fared pretty well. Also some anti-bac handwash to stick in your handbag for when you go out. I think somewhere there is a list of other things people have recommended too on one of the forums.


Its then just a matter of stocking up as you’ve already planned to do. I also cleaned the house too as although my partner does help around the house, he’s happy to live in dirt for weeks on end (think that’s a man thing)! Also plan for some snacks, I found that difficult as I don’t normally snack, I found ginger biscuits good.

I also meant to say that you might ask your bcn what other things are available to you. I’m lucky we have a cancer charity centre on site next to the hospital and I can get complimentary treatments such as reiki or reflexology there (all free). They also often run the look good feel better sessions there, which is a 2 hour make up session and you get a goodie bag to take home with you, full of high end products, again all free. I have booked in for a session later this month and reiki next month, just something to look forward to really. If we have to go through all this sh!t we may as well take some good things out of it too!

Definitely worth checking out. Macmillan also do a couple of recipe books which I picked up at my centre yesterday (they were also free). When I’ve looked through them they are very similar but the good thing is they  show what recipes are good for certain SEs (sore mouth, no taste etc.). I know it may be upsetting but you may want to consider a wig, which you may get free wig or voucher towards it (it seems to depend where you’re located with regards to what you get). Again maybe the centre at the hospital or your bcn can advise what you need to do. I know that’s sounds quite a traumatic thing but it’s good to go before your treatment so they can see what your hair is like now.  I have very curly hair, which I’ve chopped shortish, she didn’t think she’d be able to match it. She ordered a couple and my friend couldn’t believe how close to my real hair it was. I would say to take someone you really trust to give you an honest opinion with you. You may decide you don’t want to wear it but at least you’ll have it if you do (that’s the way I looked at). You will find that they are all so nice to you.

My wig took 2 weeks to come through, I collected mine 10 days after chemo - so you’ve got plenty of time. I seem to remember someone on one of the forums saying that everyone is entitled to a free wig on the NHS. Hair starts to fall 14-20 days after first chemo I think going by what they’re saying on the forums. You know when it’s going to start as they say your hair becomes very sensitive/ tingly (a bit like when you’ve worn it in a ponytail all day and you take it out). You might also want to buy a sleep cap (I got one at my local centre for a couple of quid but you can also pick them up on the internet) as they say your head can be very sensitive whilst it’s falling out and also to catch the hair. Oh and also because once you’ve lost your hair your head can get cold at night (especially now winter is coming). You might find other bodily hair goes first, I was told head hair will definitely go after first chemo the rest of it is a lottery. I am now 12 days after chemo and don’t seem to have lost anything but that’ll probably change this week, I will let you know.

The wig lady told me to be careful about shaving it (don’t go too close to the head) as the chemo can make your skin sensitive. I think those who shave are so brave, not sure I could do it :smileyfrustrated:


Do you sew? If so you could probably make a sleep cap out of an old t shirt. I sew but when I saw I could buy one for a couple of quid I didn’t see the point, plus I was only a few days off chemo then and couldn’t face trying. Good luck, let me know how you go!

Just seen one other thing mentioned on our forum today about the t part of fec-t and thought of you. Apparently that part is harsh on your nails, others have recommended black or dark colour nail polish to protect them. Fec can make your nails discoloured or give you ridges but the t is harsher on them.

Yes, might also help you pass the time to and take your mind off the wait. No, I’ve been feeling good I worked from home this week and am due to go back into the office tomorrow. Just hope the rest of the cycles go the same way. Have a good evening!

Sounds like you’ve had a productive day! I’ll keep my fingers crossed ?? for you re: the wound healing. Work was ok, nice to see everyone and did manage to take my mind off things even just for 10 mins! Felt like a normal day for a bit especially when I got home and was making lunch for tomorrow and getting dinner ready. They’ve said I can have my flu jab this week so I’ve booked that for Thursday! Some of the girls on the October forum are due to start their 2nd chemo this week so I’m waiting to see how they get on in comparison to last time. I have my 2nd one next Tuesday ?Have a good evening!