Breast Cancer Now Forum

Hi Maggi74 It’s a very difficult decision. I didn’t have the chemo and had 3 weeks of radiotherapy. I’m having Prostap injections once a month and also taking Tamoxifen and I feel this treatment plan is better for me and my type of breast cancer which is ER+.   At first I struggled with my decision but with time I now feel it was the right course of action for me.  Good luck with your decision. xxx ... View more

Hi disneyj If it helps there's lots of us out there who have made this very difficult decision to decline chemotherapy.  My Predict score showed a 4% benefit which I felt wasn't enough for me to go through this grueling treatment.  I felt it was over treatment and the side effects outweighed the benefit, especially for my type of Breast Cancer which is Oestrogen positive.  I, like you have been advised, have had radiotherapy, am currently taking Tamoxifen and Prostap injections (for Ovarian suppression) and I am tolerating them well so far.  I felt very emotional the first couple of months but I don't know if that was because I had finished active treatment or the Tamoxifen.  Either way, it seems to have settled down now.  I get a few hot flushes, mainly at night but they're manageable.  I was prepared to try the Bisphosphonates but there was only a 1.6% benefit and  my oncologist said, again, it was too smaller benefit to outweigh the possible side effects. I would be lying if I said I don't worry from time to time about my decision but as Pat mentioned very well  in a previous message chemotherapy is no magical cure and I think recurrence worries come with the territory.  None of us knows what the future holds and I'm learning to just live and enjoy the present and accept what will be, which hopefully will be a healthy, long life for all of us but if not so be it. I wish you well with the rest of your treatment.  All the best x ... View more

Dear Loucee I’m having radiotherapy and been feeling very anxious and emotional. I was reading through these posts as I think it helps to know you’re not alone (even though I feel very alone sometimes, as like other people have mentioned our family and friends are fed up of it and just don’t seem to get it) but good to know other people feel the same. However I read your post and it really made me laugh! When your consultant said “you can’t live like that “ I can just imagine a doctor saying that! And your response was so true “yes I can live like that “ I can totally relate to that. I just wanted to say I was feeling crap and you really cheered me up.  It’s so reassuring to know we’re all feeling the same and we’ve all been to some dark places but it made me feel so much better knowing I can still laugh at this dreadful thing we’re all going through. Thank you so much 🙏 🥰  ... View more

Dear Nameste Thank you so much for your lovely response.  You really don't know how comforting and reassuring it was to hear from you and Andrea, knowing there are ladies out there in a similar situation to me and learning more about their treatment plans and their experiences. My tumour is grade 2 but I have one lymph node positive and that's why chemo was discussed.   However, I wanted to avoid it, if I possibly could, so that's why I did the Oncotype test. Like you, I am on Tamoxifen (only been taking it just over a month) and so far, it's ok and no obvious side effects yet!  As you mentioned, as I haven't had the chemo, for peach of mind and moving forward, I feel I need that extra bit of protection or "safety net" which I am hoping the Zoladex will provide. It is very reassuring to know that you are tolerating them well with not too many adverse side effects and also interesting to hear that your periods didn't stop straight away.  I think you are right I am most probably peri-menopausal (I've been having very heavy periods which, I understand, is a sign that I'm moving in that direction).  It was one of the reasons why I was wondering if it was worth having the Zoladex?  But, as you said, maybe the drop in Oestrogen might not be so severe as my Oestrogen levels are maybe lower and I hadn't thought about it in that way. Thanks again for getting in touch.  Your reply and Andrea's have given me the confidence to discuss the Zoladex with my oncologist next week.  I wish you well with your recovery and moving forward. All the best, Charlotte ... View more

Dear Andrea Thank you so much for your response.  It was such a great comfort and reassurance to get your reply and to know that the Zoladex injections are not too bad and manageable.  After receiving your response and also Nameste's, it has given me the confidence to go ahead with the injections and I have an appointment with my oncologist next week to discuss further.   Thanks also for the tip about the fan.  I'll definitely bear that in mind should I need it! Regards Charlotte  ... View more

Dear Andrea Thank you for your response.  My results came back last week and fortunately it was 14 so low and chemo definitely not needed.  I’m undecided whether to have ovarian suppression now. I’m 52 but still having periods and concerned about going into sudden menopause and the side effects.  I’m taking Tamoxifen. I noticed you’re only 48.  Did your oncologist mention ovarian suppression to you?  Regards Charlotte  ... View more

Hi Andrea I've been looking through some old messages re: Oncotype test and I noticed your score was 22 back in March last year.  I am waiting the results of the test and I'm not sure what I'll do if it comes back borderline.  I was curious what you decided and did you have the chemo?     ... View more

Dear LBow82 I've just come across an old message from you regarding the Oncotype test.  I am waiting for the results of the test at the moment and I was curious to find out if you had the test and if so, what were your results and did you have chemo?  I was particularly interested because you're only 37 and I presume premenopausal and as you mentioned I've heard it's not so accurate in premenopausal women? Regards CeliaRose ... View more

Dear smclaire Thanks again for your reply. That’s good to know about the 4 x EC and I’ll bear that in mind if I need the chemo.  You mentioned you had started the Tamoxifen. Did you stop that when you started the chemo?  The hospital have now sent off my oncotype test to the US so fingers crossed it comes back low! I am having to self fund it at my hospital.  Thanks again for your responses and it’s put my mind at ease that I’m doing the right thing.  Regards CeliaRose ... View more

Dear smclaire Thank you so much for your reply. I have explained below in previous reply to Joskyblue why I’m asking all these questions!  However your score was a real surprise and just goes to show how beneficial the test is. I expect you were really surprised when you got the results but it’s good to know you’re getting all the treatment you need especially after a low Predict score. My predict score was 4% so borderline again and my Oncologist couldn’t say/didn’t know one way or another whether I would benefit from chemo or not so that’s why I’m self funding my Oncotype test.  Your Oncologist sounds very good and following the research I’ve done it makes perfect sense about the oestrogen levels. I noticed she was woman. 😉 Can I ask one more question? Did you only have the 4 cycles of EC and no Docetaxil? I understand there’s different types of chemo and knowing what you were given prompts me to ask my oncologist more questions about that, should I need it.   Hearing about your high score was a shock but it reinforces, I think, that I’m doing the right thing and getting the test. However I’d better prepare myself just in case it comes back high!  Thanks again for your response.    ... View more

Dear Joskyblue Thank you so much for your reply. I’m having to push for the Oncotype test and having to self fund it myself at my local hospital so I’m trying to get as much information as I can. I’m 51 so I’m borderline with regard to age but still having periods. After doing my research I understand the test is not so robust for premenopausal and node positive women but the US and some hospitals in the UK are putting these women forward for the test to avoid the gruelling chemo, that my not be beneficial to them. So your reply was very interesting and made sense with regard to your hospital lowering the score to 21. Thanks again for your reply.  ... View more

Hi Joskyblue Thank you so much for your reply. I was interested to hear your Oncologist said with a score of 21 there was a small benefit. I though it had to be over 25?  Do you mind if I ask are you still having periods, ie pre menopausal? I understand that can make a difference.  Thanks again.  CeliaRose ... View more

Hi Emci I had Tamoxifen prescribed to me 6 weeks before my surgery due to a delay because of Covid in January.  I had to stop it a week before surgery due to an increased risk of blood clots. After surgery my cancer turned out to be smaller than they had first expected and I thought that might have been due to the hormone therapy, or maybe not?  I didn't have Oncotype testing.  I think that is usually done after surgery when they get your pathology results. Good luck with your surgery. xx ... View more

Dear Kitkat23 Apologies for the delay in replying and thank you so much for your response.  I'm so sorry you are suffering with side effects from the chemo and I hope they improve soon. It has been a very difficult decision but after much deliberation I have decided not to have the chemo.  As I mentioned before my Predict percentage is borderline so it's questionable if the chemo will be of benefit or not.  I was very worried about the side effects of chemo, especially the Phlebitis as I had that after my surgery and that resulted in suspected DVT, injections of blood thinners for 6 weeks, along with the worry of a blood clot. I must admit after I made my decision and I told the hospital, I was expecting to feel relief but I didn't!  I still have worries about the recurrence, feel guilty and worry if I've made the right decision, but I'm hoping in time that will go and I will learn to live with decision.  Tbh, after breast cancer I think there is always that worry of recurrence but we must not let the cancer beat us and enjoy our lives.   I'll be starting radiotherapy soon and then hormone therapy. As you mention, the medical experts don't know all the answers as they said you only a had 2% chance of recurrence and then you had a recurrence.  They can only work with the information they have and none of us know what the future holds, good or bad!  So I think all we can do is work with the information we have at the time, go with your instinct and believe in fate, "what will be, will be"! Thanks again for sharing your experience and good luck with the rest of your treatment.       ... View more

Hi Emarveling I just wanted to say I'm in the same boat as you!  Not that it really helps your situation but so you know you're not alone going through the anxiety.  I was scheduled to have lumpectomy in December but then it got changed to mastectomy.  I postponed it to January as I wanted to look at reconstruction (I'm regretting that now!), but then reconstruction got cancelled due to COVID but mastectomy was still scheduled for 26th January.  However, found out today, that has been cancelled and I have no new date as yet! Sorry it's not better news but so you know I "feel your pain"! Best wishes and I sincerely hope your operation goes ahead on the 26th January.       ... View more

Dear Delly I've just seen your second message and thank you so much for all the detailed information.  You've certainly given me much to think about and I'll definitely mention it all at my next appointment.  I am also small breasted (bra size 36A) so that should be OK.  Thanks also for the tip about the shape of the implant - I didn't realise they came in different shapes and I agree with you, the tear drop shape is more natural looking. I am curious about what you look like whilst the expanders are in?  I presume like an implant but not so good, if that makes sense?  And you only have a slight discomfort for a day or so after they've been inflated? Ill be honest, this forum has been a "life saver" throughout all this!  All the replies, from such lovely ladies, who have all been through this terrible ordeal and are still happy to discuss it and give advice is invaluable. ... View more

Dear Parky Thank you so much for taking the time to reply.  Following your advice I have been looking at photos on the internet.  I'll be honest, some of the images I found were a bit harsh with bad scars and radiation burns and I was also shocked and couldn't look at them.  However, I persevered and managed to find more normal ones and, as you say, I think by looking at them it is mentally preparing me for after the surgery. It was reassuring to know that it helped you and that when you looked down you felt positive.  I just hope I feel the same! You mention you have photos and some other things that might be of help?  I am grateful for anything that might help.  Please feel free to private message me if it's more appropriate. ... View more