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katzygirl
Member
since
22-05-2013
59
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18
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22-06-2019
09:51
1 Hug
You have just made my day! Diagnosed with bc for the second time 6 weeks ago and booked in for mastectomy with DIEP reconstruction next Tuesday 25th June, part of the prep was a CT scan of my tummy to see where blood vessels are as that was the tissue that would be used in the DIEP reconstruction, then got the bad news that this had shown up bone mets and surgery cancelled. Now had further CT and waiting for MDT and appointments with oncologist. Saw it as a bit of a death sentence to be honest so to read this a huge relief and has given me hope. I will now read on and be contributing as I go on this new journey.
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11-05-2019
09:55
1 Hug
Sorry to hear you have a likely cancer diagnosis. If it’s only just become noticeable then hopefully it has been caught early. I had a similar experience 6 years ago, I had a wide local excision and the removal of 3 lymph nodes for testing. My lymph nodes were clear. After recovering from a wide local excision and removal of 3 lymph nodes from my armpit (surgery) I had 2 weeks off work and some weeks later 20 sessions of radiotherapy which is painless and for me had no side effects at all. I was on Tamoxifen for 5 years. I was very relieved that it was felt I didn’t chemotherapy. The treatment was so much easier than I ever thought cancer treatment would be so please don’t think the worst. Good luck x
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14-04-2019
08:38
I am so sorry you are feeling this way. I am six years in to hormone therapy and came on to the forum to see if there were any threads related to Vaginal atrophy and lack of libido. I started Tamoxifen straight after radiotherapy, I was fortunate that I didn’t need chemotherapy. I had read lots of threads about the side effects so was really anxious about starting it but the side effects that I did experience were manageable and didn’t have a huge impact on my life. I was 52 when diagnosed so now 58, 2 years after diagnosis I had a full hysterectomy due to a large fibroid, 4.5 years in to treatment I saw my oncologist because the side effects affecting movement (bending down etc.) were increasing. Because I am classed as low risk, grade 2 with clear nodes he was happy for me to stop early with a review 3 months latter. About a week later it was all over the news that studies have shown 5 years of treatment is not long enough so at my 3 month review, although the stiffness has eased I opted to go back on treatment and was given Letrozol to see if it suited me better. I feel generally fine but I like you have low to no sex drive, I have lost the ability to orgasm so sex has become a problem and after a failed attempt while on holiday recently has stopped. I have a fairly understanding husband who has been through this before when he lost his first wife to breast cancer but he is frustrated and I know I need to do all I can to get help to try to improve the situation. I am planning to go back to my GP regarding the vaginal atrophy and plan to find out what help there is regarding the sexual problems so will post on here with anything positive. I wish I could help more and realise all I have done is share my problems but sometimes it’s just good to know you are not alone and that it’s not all in the mind so you have helped me. I won’t come off the tablets because my side effects are not having a major effect on my life and I am so lucky to have a lovely oncologist, I wonder if you could ask to see someone else? I can see you have hit a really low point and there is so much affecting your wellbeing. Lack of sleep will have a huge impact and will then have a knock on effect that will make everything hard to cope with. When I started having problems sleeping I found that just going with it, reading etc. rather than stressing about not sleeping was the answer for me. I work 34 hours a week and find that 6 hours a night suits me, I am home most days around 3.30 so can have a snooze to catch up if I need to but make sure it’s just a snooze by sitting in a comfy chair rather than laying down. I have suffered with anxiety for many years due to a phobia, 3 years ago I came across the Thrive Programme by Rob Kelly, it’s a book that can be purchased on Amazon for around £25, I struggled to work through it on my own so I then contacted a Thrive therapist and worked through with him via weekly Skype sessions. It has helped me so much, my phobia hasn’t completely gone but after suffering from it all my life I can honestly say I am 80% better and can really recommend it. I hope I have helped even if it’s hust sharing experiences. X
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20-10-2017
06:51
Hi Karen Mc I have just been to an apointment with my Oncologist because the stiffness has become so bad I feel like an old lady at 56. I’ve completed 4.25 years of my 5 year treatment after stage 2 bc. He confirmed that the stiffness which I now have constantly not just when I get out of bed was very likely to be caused by T and because I had clear lymph nodes he was happy for me to stop and see if the symptoms disappear or ease. I will go back in 3 months as he said it can take that long to clear your system. I obviously have some reservations but was told by the oncology nurse at my previous visit that they are now prescribing 3 years of T rather than 5 or 10 and zinc assures me I am very low risk. So let’s see how it goes. To be honest it’s only in the last 6 months that it has got really bad and if I had to have carried on o would as it’s a fairly small price to pay to avoid a return of theirs horrible disease. Sorry I haven’t been more help other than to sympathise and confirm that you are not alone. I will try to update in a few weeks with how it’s going. Good luck x
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17-04-2015
11:22
These were recommended to me following hysterectomy in January this year, I had been taking them for a week when I had my 2 year check, I saw a nurse practitioner who advised I was best not to take anything herbal as I don't know what's in them and how they may affect the Tamoxifen. I have now stopped but suffering quite badly so just wondered if anyone is taking both without any problems please? Xx
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13-11-2014
02:24
Hi Lottie I think a couple of the brands were in short supply a couple of months ago including Wokhardt but that has been resolved for about 4 weeks. It shouldn't make any difference where you are in the country as this is a foreign company so the problems were with the drugs coming in to the country. Do what I do and say the diffent ones make you ill. Boots in our village go out of their way to get me the correct one now 🙂
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11-11-2014
11:12
I was terrified of starting Tamoxifen but have been on it for 15 months now and I am absolutely fine. I am on Wockhardt and because I have had only very mild side affects I insist on the same brand when I go to the pharmacy. I take it at about 8pm after dinner with the idea you sleep through hot flushes etc. good luck
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11-11-2014
10:40
Hi Madkiki, I was already taking Propranalol (beta blocker) before I was diagnosed my doc had prescribed them to stop migraines. They are also prescribed for blood pressure, I have been on tamoxifen for over a year now and I don't get hot flushes which I think may be because of the tablets I already take. Ask your doc if this is something they can prescribe to help you xx
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11-11-2014
10:29
Hi LillyP I had all of these tests last year in April, the leaflet I had said I would have all results including biopsy later that day but the radiographer that did the ultrasound advised that was incorrect and that the results would take a week. I was then asked to go back to the waiting room as if would see the consultant once again ( I saw him for an examination first that day before mammogram and ultrasound. He told me there and then that they thought I had cancer, I asked how he knew before the test results and he said they know from the look and the feel and they have to be really open and honest with you and not hold back info. I have had several ultrasounds since and have asked all of the radiographer sand they said they can tell in most cases if it's cancer. If all hospitals work on this basis they should have told you today if they knew. I hope this puts your mind at rest a bit. I am 53 my cancer was grade 2 and successfully treated with surgery (wide local incision) which is barely noticeable and not noticeable at all in clothes, my lymph nodes were clear so I just had radiotherapy which is painless and caused me no side affects. I have been on Tomoxifen for over a year now which I will take for 5 to 10 years, again with mild side affects which I am happy to put up with while cancer free. I didn't know you could be cured of cancer without chemotherapy before it happened to me and that was the thing I was most scared of as I have a sickness phobia. I have had and still receive fantastic treatment and I really feel treatments are excellent now and the cure rate is high. On the other hand I really hope you get the all clear. Good luck xx
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25-08-2014
12:57
I have been on tamoxifen for 13 months with very few mild side effects, I take mine at 8pm after dinner which was a tip I got from here, the idea is you have flushes etc. overnight in your sleep however I am also on propanaloll twice daily which is a blood pressure tablet prescribed to stop migraines and I think these could be helping to stop the hot flushes too. Hope you all find tips on here that help xx
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19-08-2014
05:48
Hi Ladies I have been on Tam for just over a year and have been on Wockhardt all of the time with none of the side effects you have mentioned. 2 months ago the chemist gave me a different brand but when I told him I really didn't want to change he went out of his way to help. Apparently there has been a distribution problem which they hope will soon be resolved but in the meantime he is prescribing the 10mg tablets which you can still get and I just take 2 each evening. By the way I am 53 and was pre menopause but haven't had a period for a couple of months, I just wonder weather the side effects are different for women of different ages?? I also take propanaloll (beta blockers) originally prescribed to prevent headaches but increased to deal with the anxiety caused by cancer diagnosis, I wonder if these help relieve side effects like hot flushes. Wishing you all luck xx
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19-08-2014
05:20
Can you tell me about Teva brand, is this the best one for no side effects? I have been on 20mg daily for 13 months and have always had Wokhard with little or just mild side effects, then 2 months ago my pharmacist tried to give me a different brand apparently Wokhard have had distribution problems too! They went to so much trouble to get me the same brand and at the moment I am taking 2 10mg tabs as that's all they can get. Xx
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19-08-2014
05:12
Just been to my GP as I have had pain in my left shoulder for several weeks. I was diagnosed in April last year (2013) had wide local excision, 3 lymph nodes taken from left hand side which were clear, 4 weeks rads & now 1 year into 5 years of Tomoxifen with very few mild side effects. I have read on here that other ladies suffer from joint pain & stiffness so maybe just a side affect from Tomoxifen or after effects from surgery. Going for blood tests tomorrow so will let you know the results. Hope you get a clear result and they can give you both something to ease your symptoms. Xx
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13-10-2013
08:24
Wow that is one of the best stories I have read on here so so pleased for you. The best thing is that although you are 5 years on you have taken the trouble to come back on to this website and tell us all, it is such a help for the people currently going through treatment. All the very best of luck to you in whatever you do now. Steph xx
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17-07-2013
11:32
Hi Mrs B
I was so nervous about taking Tamoxifen and all the possible side affects i read about on here, I have now been on Tam for 7 weeks and on day 7 of 20 days of rads with no side affects from either. Obviously too soon to be sure but would have thought some would have started by now. Sleeping well even in this heat, sex drive unaffected, I can still tolerate alcohol the same as before, no aches & pains so fingers crossed. I was just reading another thread on here that some different brands can be better re side effects and several found they lessen on Wockhardt which is the one I'm on so maybe ask your pharmacist for this brand. Also what time you take it can make a difference, I take mine at 8pm after my dinner.
Hope this helps and good luck.
Steph x
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06-06-2013
10:13
Oh and Dad seemed to take it really well, said he had been a bit suspicious but accepted the positive news that cancer all gone and just some follow up treatment, phew! Xx
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06-06-2013
10:04
Hi Jess
Any results yet? I have a friend who has had endless lumps over the years she's now 48 and has just been through all of the tests again last month after finding a large lump (mammogram,ultrasound) they found loads but all turned out to be harmless so I'm sure you will be fine.
Dont forget to let us know, we like god news on here and it will help lots of others visiting the site & going through the same.
Steph xx
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06-06-2013
09:43
Thanks for your good wishes, very pleased with my results today, they all came out as they had predicted except for some mention of another affectd small duct next to the tumour ( I think that's what he said) but that was also removed so cancer all gone. Total mass was 24mm so not under the 20mm that I had hoped for but I am just concentrating on the bit that I do fully understand that recommendation is radiotherapy & 5 years Tomoxifen and that to me is the best outcome.
I now feel I can say I" HAD breast cancer" rather than "I have" and the treatment is just to ensure any rouge cells are killed off and to stop it returning. I also feel my odds against me getting it again are as good anybody including the millions of healthy people out there, it may not be exactly true but that's how I am moving forward.
Keeping my fingers crossed for everyone dealing with cancer and will definitely be visiting this website and contributing to the forums, they have been brilliant for me and will continue to be while going through the treatment.
Love & good luck
Steph x
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