I sympathise so much with you about the fears before going to this appt - I was really scared, not sleeping, etc. Then the onc told me that my results put me in a "grey area" for chemo, so he was leaving the decision to me, very helpful. So I was offered chemo, but not told that I ought to take it. Sounds like you may be in a similar situation.
Like you I was absolutely terrified of the idea of chemo, although in my case the hair loss was also a factor. My onc seemed to be relying 100% on the software programme that they use to assess risks and didn't appear to be applying any clinical judgement or experience with his advice. I asked for a 2nd opinion, saw a different onc who had a totally different approach, who said no way did I need chemo, all I had was effectively a large grade 1 so rads plus hormone therapy would be fine.
Onc 1 also recommended Tamoxifen plus Zoladex two to be taken simultaneously, whereas onc 2 said Tamoxifen only. I decided to average things out between the two opinions and declined the chemo but I'm now on the dual hormone therapy and coping absolutely fine with it.
I suppose what I'm saying is trust your own judgement and if you're not sure, ask for another opinion, you're entitled to do that.
Thanks everyone, I have found the discussion really helpful.
I had WLE on 4/10/10 together with 23 lymph nodes removed. Thankfully, the lymph nodes were completely clear (I chose to have them removed, because of the thought of a second op, if something had been found, was just too much to contemplate), I also felt the surgeon was erring towards this decision but it was my choice.
The path results were 15mm Grade 3 invasive ductal carcinoma with DCIS (total 26mm). I was also told that the surrounding blood vessels removed were clear. I am ER+ and PR+ (HER2 reults not in).
I have the appt with the oncologist on Wednesday, and this for me is by far and away the worst appointment, I have taken everything else in my stride, but this is really getting to me. Post-op I was told that I was borderline for chemo, and for some reason the chemo part of the whole thing scares me witless (not worried about hair loss particularly). Obviously, if they say chemo is recommended I will take their advice, after all they know far more about this than me.
I suppose I am just getting my thoughts in writing, but the thought of making a decision about something I am really upset about, is quite hard, if I get that choice. The radiotherapy and drug therapies hold no worries.
Thanks for reading
The NICE guideline for timing of breast cancer radiotherapy treatment says:
"Start adjuvant chemotherapy or radiotherapy as soon as clinically possible within 31 days of completion of surgery in patients with early breast cancer having these treatments."
Here's the link to that document http://www.nice.org.uk/nicemedia/live/12132/43413/43413.pdf
I suggest you point out to the hospital that you are aware that they are supposed to start your radiotherapy treatment within 31 days of surgery and see whether that makes them a bit more proactive.
P.S. The relevant bit of that rather large document is section 4.4
I've had a WLE removal of Stage 1 invasive ductal breast tumour on 19th August. No lymph gland involvment. Now taking tamoxifen for 5 years and have been recommended radiotherapy as 'mopping up belt and braces' exercise. All the surgery and hospital stay was quick and very friendly. The scars have healed well and I am feeling abit back to normal. I have had the planning day done for the RT, but been told as I am 'low risk' and I will 'hear' within 4/5 weeks when I'm due for RT treatment sessions. I'm concerned as 'hearing' might not mean starting the treatment sessions and I am looking at possible a 17 week wait from surgery to RT treatment - is this usual? as everything I have read suggest that RT should start within 4/6 weeks after surgery. The radiographer implied to my anxious husband that it wouldn't matter if treatment didn't start for 6 months - at which he asked does she need it at all then. The thoughts of waiting and putting my life on hold to start these RT sessions is not helping my mental state. Can anyone make some positive suggestions or comments please. I'm so fed up with waiting.
My radiotherapy was delayed by several weeks because I could not move my arm high enough above my head. Don't worry about the delay - the radioterapy is used as a 'mopping up exercise' after the cancer has been removed.
Hi Catherine, sorry to hear about the swelling and planning postponed hope it soon goes down and you can get on with the treatment keep us informed, good luck
Thanks again ladies (RT Planning now postponed due to breast being very swollen!) Happy days! Regards Catherine xxx
I think eilidh7 is right with her comment about hormone levels, but I think also age is a factor because the cancer tends to grow more quickly in younger women, so they treat it more aggressively. So younger women are more likely to be recommended to have chemo. If you are, say, 55 or over and therefore menopausal you get a different type of hormone therapy, if your BC is er+.
Thanks for all your comments - it's really helped - can anyone tell me why age is taken into consideration when they decide what treatment is offered.
Hi I wasn't given a choice just told I would need rads and to take tamoxifen for a year. I think if the lymph glands are clear that is standard procedure. Awaiting appointment regarding start of treatment thx for all the posts it helps to know what to expect before you go.
As to whether you have any control over RT versus Chemo and RT, the final decision will always be yours. Your oncologist will advise you what he recommends for your particular BC, which will take into account your age, the grade and stage of the BC, and whether it reacts positively to hormones (ER+ and/or PR+) or human growth factor (HER2+). They usually plug all this info into a software programme called AdjuvantOnline which gives them various statistics for what your future BC risks would be with or without the different treatments.
Unfortunately sometimes this results in a figure which puts you in a grey area where it is not absolutely clear cut whether you should have chemo or not, then the decision is left up to you. This is what happened to me and I found it very worrying, since I wanted the experts to tell me, not expect me to decide.
My onc "offered" chemo, then when I said no, he pushed it rather strongly. I then asked for a 2nd opinion (which you're always entitled to) and she said no way would she have even suggested chemo, I just needed RT and hormone therapy. That took a huge weight off my mind in saying no to the chemo. But many people will take any treatment that is on offer, everyone has to decide for themselves.
Good luck with it all
Hi Catherine At my rads planning appt the CT scan was done and as Celia says took only a moment or 2. It was only of the breast area and is another tool for them to use in planning where to irradiate. As for the chemo part perhaps take the opinion of your Onc and ask for the pros and cons as they will have this thought through too. I had chemo first was 'borderline' for chemo according to my Onc but I could tell that there was a preference for me to have it ( and they also wanted to try to shrink the lump too prior to surgery) but the decision was mine.At surgery later the node invovlement came as a surprise as there were 4/11 and this was unexpected.So chemo was the right choice for me.The turmoil in making these decisions is a lot to cope with. Have your questions written down and have you got someone to take with you also do you have a BCN who can sit in at the appt with you? Good Luck tomorrow. Jackie
Thanks Celia - I really appreciate your reply - I like to know what expect - talk soon! Catherine
Hi Catherine yes just the top half at least thats what mine was like didnt go all the way through the scanner its really nothing to worry about, I know I was worried about the scan at first because I didnt want to be enclosed in anything but your not it is open at both ends and very quick,and the tattoes are done after the scan they dont hurt at all at least mine didnt, let us know how you go on,
During the planning session they will line up the area to be radiated and probably do pin-prick size tatooes. This helps them to line you up on the radiotherapy table. When it comes to the radiotherapy sessions, there's a lot of faffing around moving your body one way and another to line you up on the table, but the actual radiotherapy bit hardly takes any time. As to whether you have any choice about what treatment to have, I always take the advice of the doctors as they are advising you of the best course of treatment for your particular cancer.
Thanks Celia - is the scan just the breast area? scuse my ignorance.
Hi Niceheart I went for the planning yesterday and you have a ct scan which last for 3 mins and is nothing to worry about you just lay on the table and keep still thats all there is to it,I was told originaly that I didnt need rads then was told I ought to have it as the margins after the mx were very close but didnt need chemo so the rads decision was for me to decide and I went with the recomendation,
Hope all goes well for you,
I was diagnosed with breast cancer on 1st September. It was a malignant invasive ductal carcinoma grade 2. Sentinal lymph node biopsy was clear. I had a lumpectomy and I am now awaiting radiotherapy and hormone treatment. I am thankful at this stage chemo has not been mentioned. I have my first appt with oncologist tomorrow and I have a couple of questions to ask anyone who is in a similar situation or has already been through this. It would be great if there is anyone out there who can help.
First question - if undergoing RT does everyone have a CT scan?
Second question - do I have any control over what treatment is offered ie RT alone versus Chemo and RT.
I've got lots more and it would be really helpful to hear of others experiences. I'm going through the usual emotional turmoil and would love some support and to support others in a similar situation.