Breast Cancer Now Forum

Thanks Tors I will find it and join. Boo x ... View more

Hi All (if you read this!) Just an update from me following my latest appointment with my Onc. He did agree with my surgeon in that there is no latest research to suggest that pregnancy causes further breast cancer or effects your prognosis. He says definitely stay on tamoxifen for the full 5 years, maybe even more (subject to what future research shows up). He said he would support me having a baby after that but would want me to have a full body scan to make sure there is no signs of mets anywhere. I expressed my concerns about the timings of my breast cancer to pregnancy with my daughter and he couldn't really say another about that. I said I was concerned that in my case the pregnancy may have caused/ triggered the breast cancer and if this was the case then in my individual case it would not be wise to repeat this. Again he couldn't really say anything to this. He suggested I wait another 2 years to the full 5 years, have the scans done and then have the conversation again then. He did say that in my situation where I have one child I may want to not risk having another baby. He said it is very different for women who have not had a baby. I do agree with him in some ways but on the flip side of this, if pregnancy is safe for a women who has had breast cancer and has not had a child surely it is safe for a women who has had a child (or more) and wants another. It's a pregnancy after all. He also said that the pregnancy makes it very difficult to monitor someone, because you can't have scans, the blood tests are all over the place and can mimic raised tumour markers etc. My husband certainly came away with the opinion that the Onc thought it was best not to have another baby. Easy for him to say! Where does this leave me now and how do I feel? Very unsettled again! One part of me feels that if the surgery and chemo were successful and removed all cancer then I should be cancer free. If they didn't and the tamoxifen is keeping it at bay then it will come back whether I stay on tamoxifen for 3, 5 or 10 years, have a baby or not. Some days I feel fine about getting on with life and enjoying the little girl I have but other days I just want to be like all my other friends and have the second baby I always wanted. I feel well, positive about my prognosis and to this end, why should I not try to have another baby. Afterall I don't know if I will be able to. I am having irregular periods but I have no idea what the chemo may have done to my egg quality. That all said I would not want to go against the professionals recommendations and to this end I will have to wait, but I do feel like I'm waiting to find out whether I have secondary cancer by year 5, or whether I'm clear and get to have another baby. That will be what will happen in 2 years time, the scans will either show cancer somewhere or will show it to be clear, and living with that thought is not pleasant. And all this because my body and heart is telling me I want another baby. It is so pants, and I know several of you on here are in the same situation as me which is a little reassuring. Anyway that me....... Boo x ... View more

Hi Hobo, Thanks for sharing your situation too. I think from what I have read from others experiences that Onc do rather seem to say stay on tamoxifen for 5 years when there is lymph node involvement. I think if there is no lymph node involvement, they feel more relaxed in saying less years. I think for my own piece of mind I will leave it the 5 years but it is so tricky as having a baby is what I really want to me doing with my life now not in 3 years time! I hate feeling like it is a waiting game because life is far too short for that. I did in the beginning spend a lot of time on nice holidays but sadly the money is fast running out so I can't even convince myself that I am doing all these luxury holidays I couldn't do with a baby. It is so tricky, and like you say all we want is what all our friends seem to have but don't realise how lucky they are. What's micro invasion? I had micro mets in 3 out of 11 of mine, your lumps were sooooo small, not come across many women with two lumps like us most seem to have one. Boo x ... View more

Hi Nat Sorry to hear your story, it never ceases to amaze me (not in a nice way) how many young women there are that keep going through this. It is bad enough having BC but for it to come at a time in your life when you have other equally trumatic things to deal with, like a loss of a baby, it is just totally cruel! I wish you all the very best with the rest of your treatment, I had chemo, no rads but took Zoladex and are still taking tamoxifen. Had masectomy and immediate reconstruction too. I feel in a relatively strong place 3 years on, OK apart from this dilemma to try to have another baby or not!, if I can help in any way, answer any questions always message me. Thoughts and wishes Boo x ... View more

Hi Tors Thank you for taking the time to respond. It is nice to know that others are in a similar situation with the same dilemmas. It is interesting what your Onc says. My consultant, the one who did the surgery seem pretty happy for me to try and have a baby, but feels a lot more comfortable it I stay on the tamoxifen for the full 5 years. I have not spoken to my Onc yet about this, but from experience of other things he often differs in advice from the surgeon, so I will see what he says. I really don't know what I will do, in some ways I have time and perhaps I need to try not to obsess over making a decision now. Not easy though! In some ways I think it would be easier if the advice was that pregnancy increased risk and not to go ahead with pregnancy, then I think my mind would be made up and I would accept my very dear little girl and not keep thinking about whether I could have another. For so many years since diagnosis I have felt my pregnancy caused my BC, but I have wondering whether it may not have been that. I have been reading about the contraceptive pill and BC and I was on the pill from 15-16 years old until 27 years old, maybe it was this that caused it, maybe coming off it triggered a change in hormones or whatever and the cancer may have started after I came off the pill and not necessarily as a result of the pregnancy. They do say that women who have babies are less likely to get BC, they also say that women who use the pill before having a baby are at a higher risk of developing BC, as well as those who a family history of BC, my Dad's Mum was diagnosised age 42 with BC, died age 55. I have been Braca tested and it is negative. I am seeing a clinical psychologist who specialises in helping people live a fullfilling life after a diagnosis of cancer and have started to talk this very issue through with him. He is the one who has suggested I decide I am not going to make a decision now. I hope this helps and helps me come to a state of peace in all this. Boo xx ... View more

Thank you Lulu34, I have seen this guidance but believeing it is another thing! Like you say it is really my call, what I am interested in is those who had this same decision to make and whether they decided to have another baby or have a baby and how they reached that decision. Also interested in hearing how long the hormone positive ladies stayed on tamoxifen before coming off it to have a baby. Any views welcome and received with thanks. xx ... View more

I don't think having periods mean that tamoxifen is not working. I know my oncologist wanted me to stay period free for two years post diagnosis. I think there is a body of research which shows this can be beneficial as the ovaries do produce oestrogen. That said my surgeon consultant did not agree and would have been happy for my periods to return as and when after chemo. I decided to go with the oncologist and went on zoladex after I got a period 10 months post chemo. Now 7 months post zoladex and still no periods, just stomach and back aches on and off, would love to know what the he'll my body is doing!! I have a almost 4 year old. Pre BC I always wanted two children but feel I should be grateful to have one and still be alive to see her grow up, so for now at least I am putting my efforts into her. Still, I am sad not to be having another baby, especially when all my friends are onto baby number 2. Boo X ... View more

Hi is anyone who posted earlier in this thread still about? I am 7 months post stopping Zoladex and still on tamoxifen. Had hormone levels checked last month. Showed Oestrogen still in post menopause range but LH and FSH also low, not consistent with being post menopausal. Have been told the brain hormones are trying to get the ovaries working but he expects the zoladex is still effecting me. I'm 32 years old. For the last 4 months I have had terrible mood swings to the level that sometimes I feel I just want to book a flight out of here leaving my child and husband. I have pelvic discomfort like I am about to come on. Hot flushes are bad some days and not others, like wise the mood swings, some weeks I feel quite stable other weeks I feel like I will self destruct.It seems cyclical but with no noticeable pattern. Recently in the last couple of weeks I have had what seem like the kind of stomach ache you get the day before you have a period. I also have noticed some stabbing like twinges in my surviving breast, I have lower back ache on and off with some twinges in my hips, and a feeling in my groin, like a throbbing. The only way I can describe it is like your knicker elastic is too tight. I swear the veins on the tops of my legs are more prominent. I feel like I need to have a period but still nothing happening! I am so frustrated as now I have this back ache/ hip ache I am worried that it could be secondaries, but at the same time I know low oestrogen can be responsible for lower back ache, like wise, if my periods are trying to come back and my ovaries are starting to work again all these symptoms could be the increased activity in this area. I am very in touch with my body, especially now, but before breast cancer I always felt ovulation. My friends can't believe I have noticed all these symptoms, but then they have not had breast cancer. Can anyone tell me if they had any similar or the same symptoms in the run up to their periods returning after they were on Zoladex or after chemo? I am not desperate for my periods to return, just want to feel normal again. I can live with the PMT feelings but only when you know it is there for a reason. Boo xxx ... View more

Hi Zee Blimey you been through it and at such a young age (of course I'm so old at 32 years!). I saw my consultant last week and my oestrogen levels were post menopausal and but my FSH and LH (the brain hormones) were not in the post menopausal range. He said they were difficult to decipher what was going on but he suspected the zoladex was still in my system and it would be a matter of time before a period of some sort returned. When I got home I looked up my blood test levels and it seems the oestrogen is very low but my FSH and LH are what would be expected for a 32 year old. I do feel a little better that the tests have confirmed I am quite imbalanced at the moment. I am pretty sure my brain hormones are trying to get my ovaries to work but for either tamoxifen or zoladex reasons they have not got there yet. I am just trying to enjoy life without periods as I know they are not going to be pleasant or predictable when they come back. Zee are you having treatment in Mauritius? Your first breast cancer was it hormone negative? I am wondering why you were not on tamoxifen after the first diagnosis? How often have you had mammograms or ultra sounds since the first diagnosis? Not that luck is a word I like to use but second time round they have caught it very early. I worry about my right breast and wonder if I should have it off. Glad you have found the forums here, they are a great source of info and support. Don't know if you have posted elsewhere as I am replying to your post late, I have not been on here for a week or so as we have been on holiday. Boo Xxx ... View more