Breast Cancer Now Forum

Oh and I’m with you on the holiday planning challenge @Dot2Dot … I’m having June’s implant 3 days late and then July 4 days late to accommodate a planned trip. Holidays are important as we come out of active treatment! I’m going to ask about ovarian removal as with years of this ahead I just think I want rid of them. My GP described ovaries as time bombs so I’m hoping to take that anxiety away… ... View more

Hi ladies  Just jumping onto your thread as I’m in (almost!) the same boat. My recurrence risk has come back as high so rather than the standard route of tamoxifen (I’m 43) my oncologist has recommended Zoladex. I’m seeing him again next week and I think he will be moving me from tamoxifen to exemestane now I’ve had 2 months of Zoladex.  My side effects so far have been varied and bothersome but not unbearable. I’m taking that as success given we are in this for the long haul.  One challenge I’ve got is my appetite. I’ve always had a small appetite and since the hormone treatment started I have an insatiable hunger - something to watch as at this rate I’ll be overweight before too long…  Something that concerns me is whether or not my oncologist will consider vaginal estrogen alongside exemestane. Have any of you been prescribed that?  Best wishes and positivity to you all… just off to have a hot flush and a whole packet of biscuits (😩)  Jen xx ... View more

oh Seagulls I feel it with you!  I had my first ovarian suppression injection 3 weeks ago and I’m feeling absolutely vile. So emotional and sad. I’m in danger of totally losing my temper inappropriately and I’m shattered. Hormone therapy is hard work.  Just my own experience with sertraline. My husband (who has Parkinson’s disease) is on a fairly high dose. It took a good few weeks or even months for it to work but when it did it was like having the old him back. I’m hoping it works for you too! Xx  ... View more

Just a little update from me. I had the results of my chest CT scan yesterday. The nodules haven’t changed - so are not cause for concern. I didn’t realise I’d been holding my breath quite so much on this. No need for a further scan. Time to celebrate…. Pommy how are you? Xx  ... View more

Hi Pollyann  I read your reply with interest… I’ve been on tamoxifen for 3 months and have my first zoladex injection next week. Do you mind me asking at what point your oncologist switched you to an AI? I’ve found tamoxifen ok so far but I think I’ll be switching to an AI at some stage and it makes me nervous!  Thank you x  ... View more

I’m not able to tell you about the lung module as I have my follow up CT scan next Tuesday. It was strange to re read my original post… I was in such a dark place of anxiety when I wrote that.  A bit of reflection from me 6 months on… My surgeon said it’s rare for a scan to show nothing - we all have lumps and bumps and abnormalities. A case of ignorance is bliss. An anomaly on a scan doesn’t automatically mean an advance of our cancer. I’m trying hard to separate fact from fear. What I do know is now I’m in a calm headspace I know I have no lung symptoms but last year with that nodule news I swear my body and mind played tricks on me - I was breathless and tight chested. I’m not for a second suggesting our symptoms are all in our heads - just that anxiety can be a cruel and crippling filter on reality. Again; fact or fear. (Can you tell I’ve had CBT?)  I’ve just come back from a 10 day holiday to celebrate the end of my active treatment. Like you I avoided chemo and had 15 radio sessions. I’ve now got to have my ovaries suppressed (next week too). Please do go on that holiday. Deep breaths.  Let us know how you’re doing and I’ll let you know the results of my chest CT. I’m fairly confident mine will be ok.  xxx ... View more

Venlafaxine has definitely helped with my hot flushes and night sweats. I’m on the lowest dose at the moment. My GP is keen to up the dose but for now it feels like enough.  I did find the first couple of weeks on venlafaxine tricky - I felt panicky and anxious. That is fairly normal I think - it’s just as your body adjusts and it did pass.  I’m just giving you the heads up - maybe it won’t happen for you - it should pass.  ... View more

there is such conflicting advice isn’t there? I hate cords - the worst bit of the journey for me x ... View more

I agree with Jaybro on getting the cords checked. I was worried about the cords in my breast and it was reassuring to have them checked.  ... View more

I had terrible cording after a WLE and SNB in November. My surgeon said some people are susceptible to it and others not, it’s luck of the draw I’m afraid.  First of all I just want to send you lots of sympathy and a big hug. It’s so painful and debilitating isn’t it? I had cords running through my breast and down my arms to my wrist. I couldn’t move my wrist if I held my arm out. My surgeon manually broke 6 cords. Very painful and they quickly came back. By chance I met a lymphoedema specialist who says current thoughts are not to manually break them.  Keep doing the exercises. Do them several times a day. Personally I don’t think the ones given to me after my op were enough in my circumstance. Google “breast cancer physio cording exercises” - there are great YouTube videos. I found some by an Australian physio and another good one from a hospice. Lots of child’s pose, holding your arms out at your sides whilst laying on your back with knees bend to the other side to create a good stretch. If you can’t find them send me a message and I’ll link them.  Massage helps. I know it’s sore.  My cords resolved - apparently most do - so take heart. Keeping mobility is key. My husband joked that I needed a prayer mat for Christmas as I was doing the exercises 5 times a day! Xx ... View more

Sorry for the slow reply… trying to find my new normal - a slow emergence from treatment.  The prosigna test is a test used to assess and predict the likelihood of secondary recurrence in hormone positive breast cancer. It’s often used to help decide if chemotherapy would be of benefit. It is similar to an oncotype test and gives a score and percentage of change of recurrence - and therefore a low, intermediate or high level of risk.  I was confused that my oncologist suggested it as I am only(!) 43 and premenopausal but he said in women over 40 it is his personal preference for testing… I know it’s good to have all the information but part of me is wishes I didn’t know my recurrence risk was high… x  ... View more

Jumping on with a bit of advice. I my radiotherapy finished 2 weeks ago. I had 5 sessions plus 5 boosts. I moisturised lots and my skin on my breast has coped really well. Medihoney barrier cream is good - I was recommended it - you can get it online easily. I stupidly didn’t moisturise my lymph scar area and that is now broken and sore - like a burn. Make sure you’re not daft like me - moisturise there too! Xx ... View more

I’m sorry to hear you are feeling low. Well done for sharing. We understand!  I’ve started taking an antidepressant (venlafaxine) as I was really struggling to cope after my diagnosis. It’s one of the drugs that also helps with hot flushes on hormone treatment. It’s helps me so much, definitely glad I made the decision to take something to make me feel better - it felt like a huge step for me but it was the right one. I’d really urge you to talk to your GP about your options.  One bit of advice… I initially felt worse on venlafaxine. My GP said that’s common and to ride it out. I’m glad I did, after 2-3 weeks I felt like ME again.  Go gently with yourself. Xx   ... View more

Hey Carrott So my prosigna was even higher than I thought… which is such tough news to hear. I’m trying to remember that it’s just a statistic and will help guide the best treatment etc etc but I have to admit the demons have crept in a bit. I’m trying to push them away.  Like you, I’m starting on tamoxifen. Then mid April (after my holiday!) I’ll have my first ovarian suppression injection. I’m then seeing my oncologist again a few months after that to see how I’m going. An AI and bone infusions comes next but one step at a time I guess.  I’ve got a telephone appointment with my GP tomorrow so I’m guessing the tamoxifen will start then. I’m not looking forward to it but it’s the start of a long journey so I guess I need to put my big girl pants (big girl bra?) on.  How are you getting on?  Jen xx ... View more

Hi Carrott Really good to hear from you given we are on similar hormone therapy paths. My oncologist hasn’t suggested tamoxifen first (I’ve not started anything yet) but that’s now top of my list of questions for when I see him on Monday and hadn’t even occurred to me so thank you. It would seem to make sense.  I’m really glad to hear you are feeling ok so far. It’s easy to focus on the trickier side effects isn’t it? But as you say everyone is different. I have a friend who had ovarian suppression and aside from a day of a bad headache immediately afterwards she’s felt absolutely fine.  While I’ve not been through menopause yet, my periods (which I’ve only had since dx and having my coil taken out) are very light and short which I understand could mean my oestrogen levels are already low. This has eased my mind a bit that the crash might not be so bad! I’ll share what happens at my appointment on Monday.  Jen x  ... View more

Thank you Kay. I’m started to get my head around it. These curve balls that come when you think you know the “plan” mess with your head don’t they? My husband spoke to a colleague in America who had the same treatment. Seems it’s much more common practice there. I think my concern about side effects is overwhelmed by my need to do all I can to keep the anxiety of recurrence under control, so my plan to to go for the full big guns with suppression and letrozole and the z acid infusions when I see my oncologist next week.  Oh the joys! And all the cancer muggles assume it’s all behind me now…  Thanks again for replying.  ... View more

Just to add I know survival is key for all of us! Didn’t mean to sound flippant… x ... View more

So I’ve just got back from seeing my surgeon. She said the cording was “chronic early AXS” and gave me 2 options - referral to physio or “I can sort this now if your pain threshold is high enough”. I opted for the latter. She used a needle to manipulate and snap 3 obvious cords. I’ve got to be honest it was extremely painful (my husband said I made childbirth noises - I didn’t cry or scream but I did sort of moo!!) and it’s very sore now but the relief is massive - and the cords in my armpit are no longer visible. She said I have more that she can’t access - hence the tightness down my arm to my wrist - and to keep up the stretches and she will review when I see her for results (no results today sadly and I’d geared myself up for them…). Glad this particular bump in the road is done!  Off to bed with some painkillers and Netflix after that… Thank you again for your kind words xx   ... View more