Breast Cancer Now Forum

Hi all it has been a while and I’ve had a whole set of scans (should be called a grand slam really) because I developed some strange pains on my rib cage. My oncologist referred me for a CT, a PET scan and an MRI. Fortunately, none showed any cancer activity but they also did not offer any explanation for the pains. Then I had a bit of an inspiration and started thinking about allergies.  In the last year I have definitely developed an allergy against conifers. I get a really nasty rash if I brush against a branch. Before I only had a euphorbia allergy so this is new. That made me think of foods and excipients in tablets. For no good reason I decided to start somewhere with eliminating food group and picked gluten.  It is now a week but I am feeling so much better. My pains are almost 100% gone, I didn’t know it had anything to do with it but my gassy tummy is much better. My skin is improving. I sleep better - probably because I am not in so much pain anymore and I feel a weight is lifted from my shoulders. Have not told the oncologist yet. I want to keep going for another week and eat some gluten to see if all the symptoms I describe come back. I do have a touch of arthritis in my right knee and that still bothers me a little but I feel less pain. and the neuropathy in the feet is much less painful now. As if the ‘damaged areas’ in my body are aggravated by the gluten. The pain on the rib cage is completely gone. I strongly suspect I am not a coeliac because I would be very poorly eating gluten but that needs to be checked out. There is a non-coeliac gluten sensitivity that I could have. I think it needs checking.  I am just wondering because I read so much about pains after chemotherapy and radiotherapy. Would there be a chance that it has to to with food intolerances that we acquire during treatment? I Have no real evidence for this but I just thought I put that thought out there because it might help others. Will keep you posted.   look after yourselves Oots  ... View more

Hi all.  I have not looked at the site for a while because I was so busy  but isn’t it amazing how many of us are worrying about the same thing. I decided to stick with my grey hair. At nearly 56 I’m ok with that and I don’t have lengthy colouring sessions to sit through anymore. Yay!   re Tamoxifen, I’m on it since July. I am not 100% sure how it affects my weight because I joined SlimmingWorld and I started exercising 3-4 times a week. I am loosing weight but only slowly. Ca. 1 pound per week (not counting the Xmas period where I put on 3 pounds 🙀). I suppose I am a little surprised that despite the exercise which is a new thing for me, progress is slow. But I am putting on muscle. My legs and arms are a lot stronger. Difficult to know. But the sweats getting a bit more infrequent. What a relief.  Oots ... View more

That’s brilliant news, Sue. I’m so pleased.  I’ve just had an appointment with my oncologist and one of my questions was how worried I’d have to be when I make any observations. Very tricky and I didn’t get a straight forward answer. Shouldn’t really have expected one anyway but I suppose it’s best to be cautious and more concerned than we would normally be.  I have started to do exercise; three sessions a week. An exercise class (circuit training) and 2 sessions in the gym (combination of cardio and weights). I’ve never been into gym exercise but I find it very helpful. Mainly because I feel so much better for it. I can feel my body changing for the better. But more importantly, I feel safe while exercising. I have lost confidence in my body and my balance is a real issue. It’s probably due to the neuropathy which is getting better but hasn’t completely gone and the controlled environment helps me getting in with it. I am please 2019 is coming to an end. This time last year I had no idea of what was ahead of me and what a tricky year (Total Understatement) it’s been; I think we all deserve a better year ahead. I wish you all a happy and healthy 2020.   Oots ... View more

Brilliant. I hope it all went well yesterday. You must be relieved it’s done. And radiotherapy is time consuming but not nearly as tough on the body.  I think we should all hope for a better 2020! 2019 was a bit rubbish to say the  least. Oots xx ... View more

Hi all   i have not been here for ages. Mainly because I tried to move on and it has been a battle. I had my radiotherapy in July and it was so much easier than chemo but I was sooooooo tired. I used E45 dermatological cream for dry skin twice a day and had no problems with the skin at all.  The biggest problem since completing all my treatment was the fatigue. I was too tired for anything. Perhaps there was a psychological element there too. The fighting was done and I was losing the fighter attitude. Most afternoons I had to sleep for a few hours. In addition to that my muscles had wasted away and I was very unfit. I am also experiencing the most amazing (not in a good way!) hot flushes ; dripping like a tap many times a day.  I decided to start walking and initially I was barely able to walk 5 minutes slowly. Now I walk more than 30 minutes at a decent pace. I also had my bloods checked and it turns out I was low on vitamin D and ever since I started taking the supplements, I feel much more energetic. For the last 3 weeks I have not needed these extensive naps anymore which I am very glad about. I have even got a gym inductIon session booked. Hopefully that will help with muscles and stamina.   I am just starting to feel a bit like my old self again and even my face looks more like it used to. It was still a bit swollen but that went away gradually.  The hot flushes are still a bother but I drink a lot of peppermint tea and that seems to help a bit. I am also contemplating acupuncture.    I am so glad to see progress of the group. Remember when we all started and it seemed this would go on forever? We’ve been real fighters.    Oots ... View more

Hi Emzlew   I am from the April 19 group and I had four rounds of TC. It had very strange effects on my tongue and sense of taste within hours on each infusion. It was like a strong tingling on the tongue that never stopped for a couple of weeks. I could not taste very many things such as apples and other fruits, sugar, salt etc. I loved tomato ketchup (on toast) and curries. It did fix itself after ca 2 weeks and I could enjoy food again usually for a week before the next chemo. I finished chemo in May and my sense of taste is back to normal. Sometimes I imagine I can feel the tingling again. Not sure that it’s real.    I made a list of my side effects by day as a reference what to expect for the next rounds. To some that might feel a bit unnecessary but it helped me. I found that very similar things happened on the same days post chemo and I was ready for it the second time round.    Good luck everybody. I know you are all going through a tough time right now but there is a point in the foreseeable future when you will feel better. That thought has helped me a lot.    Oots   ... View more

Hi Debi   I had a lot of trouble with seroma after my mastectomy and partial lymph node clearance. Initially I needed to have a lot of fluid drained on two occasions, a small amount at a third appointment but then it almost abruptly stopped.  Hopefully this will be the case with you too.  Fingers crossed.  Oots     ... View more

Hi NikNak5   I had two drains in after my mastectomy and partial node clearance. I didn’t feel any real pain when they were removed; I would rather call it a sensation. They asked me to breath out as they pulled and I didn’t realised it was gone after one breath. I didn’t look!    Oots ... View more

Hi all   I have not posted in ages. I was preoccupied with treatment and some other, very unhelpful stuff in the wider family. I have finished my radiotherapy at the end of July (15 sessions) and am now on tamoxifen. I had my mastectomy in February and my last of the four doses of TC chemos mid June.    So, now I am trying to get myself back to normal and it’s harder than I expected. I read all your recent posts and saw questions and observations which show I am not alone.  So I thought I put down a a few of mine. Maybe they help?   Taste: my taste buds have recovered and I can enjoy food again. Sometimes I still have this tingling feeling on the tongue but not nearly as bad and food tatest as it used to. I have gone off some foods such as apples, prunes and TUC biscuits. Mainly due to negative associations.    Hot flushes: I suffered terribly when I first started on Tamoxifen. I even started to have night sweats which I never had before. But two months later it’s calming down substantially. I only have them occasionally and then they are not as severe. I used to sit there dripping like a leaking tap. But now it’s more moderate.    Hair: I had great success with the cold cap. I didn’t loose my hair but it did thin a little. So i can’t comment on hair growth up there. But i noticed elsewhere that 3 weeks ago, my hair started to grow again. That would have been two months after the last chemo. Up to that point, nothing substantial to see. My eyelashes are growing back slowly but they are curly and going in all directions. I find that my head hair usually grows 1 cm in 4 weeks (I used to dye my hair and the grey line was the indicator).    Fatigue: This is my greatest problem right now. Around early afternoon I seem to hit a wall and I collapse. My body is exhausted and I need to lie down. During and just after radiotherapy I had to sleep every afternoon and I was never a snoozer in my entire life. Now (6 weeks after radiotherapy) I don’t sleep so much but I still have to rest.    Neuropathy: I didn’t have any issues during chemo itself but this developed soon after I had finished. I have numb toes and sometimes fingers. Worse on the RHS of my body. The middle three toes of my feet feel as if there was a rubber band restricting them. And the top of the right toes I feel a pain when I touch them. It’s getting worse when I feel cold and/or stressed. So I bought warm socks and stopped talking to people ho stress me out😉   Muscles: my muscles are in a shocking state. It feels they’ve wasted away. I am now walking most days, for a mile each time and it is hard. Initially i managed to walk 200 meters but I have increased the distance. Some days it’s harder than on others and there is no obvious reason. My oncologist recommended to join a gym and work the upper body as well.    Memory: I have sometimes trouble remembering words and names. That also gets worse with stress and I seem to have good and bad days with that. I can still do Sudokus as efficiently as before. So computing power is as normal.    Overall I am not too bad and optimistic I can get better and to a more normal state. But it’s been tough. I have since met and spoken to a number of women who have all come through this and who seem back ‘to normal’ if that’s at all possible. they all said that it took a long time. That helps me feel confident and suggests I need to be more patient. Good luck everyone! We’ve got this!   I would be interested to hear if anyone has issues with fatigue and neuropathy too.   Oots     ... View more

Hi reallyzeb    i have also been getting pains in ‘what used to be my breast’. Stabbing at times but not nearly as bad as you describe. In fairness, not much is left that could hurt. They come and go.    My skin is OK. I finished 10 days ago and initially the skin was red and tender but now it is calming down.    The worst part is the fatigue. I am soooooo tired. Mostly OK in the mornings but from ca. 2 pm it’s like I am collapsing. I am trying short walks to keep the energy flowing.   Hope all who are still in therapy are doing OK.  Oots     ... View more

Congratulations to all who have finished. It’s a lovely feeling after all these months of ‘torture’. To all who are still going through treatment. I am cheering you on while you are completing your treatment.    Oots ... View more

My last one too. The ‘triathlon’ completed almost exactly 6 months to the day I had my mastectomy. I had to have a sleep for a couple of hours when i got home and now I am trying to work out how I feel about all this. It was a mostly cheerful farewell with the staff and other patients and the lovely young man who drove me to the hospital for three weeks. I had chatted with him so much I felt I knew his family. He even brought me a spinach and lamb curry, his wife had cooked.    When we got home today, there were flowers from friends waiting for us. So many people who have supported us through this time. I definitely feel very grateful and privileged to have such lovely friends. And while I face similar issues as Nellie, I am looking forward to a bit of normality in the near future.    I have three sessions of acupuncture scheduled for the next 3 weeks provided by a charity called Penny Brohn. Maybe that will help with my joint pains that are coming and going at the moment.    Hope everybody got on ok this week. I’ll be cheering you on all the way!   Oots   ... View more

Hi Nicky   I am sorry your skin is affected. What are you using to moisturise. I was given instructions to use E45 and I do that twice a day. I am also using a mild shower gel and deodorant. All that seems to have helped. My skin is darker around the area of irradiation and sometimes feels a little tender but that’s all. Of course, this is after the mastectomy so I don’t have the added complication of a skin fold. I hope it all cal s down but I am sure there are things the team can suggest that might help.   Hi Sandra, I have not felt all that emotional over radiotherapy. I think I’m still in fighting mode and it will hit me when all is over. Last night I was sitting in the garden reflecting on all the tough moments over the last 6 months. It has been quite horrible for the most part. I am sure many among us here feel the same. And I can now understand why some people refuse treatment. While I am lying on the table every day, I don’t feel that at all. I can only think about the time this will all be finished. This has been my focus through all this time but I worry that all the emotions I didn’t have, will come to haunt me soon.   I am also having three sessions of acupuncture starting next week. I am hoping this will help with my joint pain and sleep. Fingers crossed.    Good luck to everybody. We’ve seen this through so far, we’ll manage the rest!   Oots   ... View more

Hi Bernie and Nellie,   started on tamoxifen today. I have already got hot flushes and night sweats, so hopefully the impact won’t be too shocking.  11 done, 4 to go. My skin is a bit red but otherwise ok. The fatigue is something else but I am so excited that Friday is the last one!  I’ve not had a reconstruction when I had my mastectomy so that’s something to consider in the future. At the time it seemed too much to even contemplate. I will give it a year and see how I feel a out it. A small part of me feels that I was in a battle and I want to have the scars as a reminder but perhaps that many scars are too much. I am confused.    Oots ... View more

Bolus? That is interesting. i have not heard that expression. Mine is done done surface guided and I don’t have a tattoo. And then there is the variety where you have a tiny tattoo. It is all very interesting and I keep asking questions about the instruments and how it all works. As you say, every day a school day.  I have now 10 out of 15 done and I am unbelievably tired. I go to sleep,every afternoon when I come back from hospital. And I have NEVER been a snoozer in all my life. I had no idea I could sleep during the day unless I was seriously ill. And there is a slight tenderness to the skin but apart from that I’m OK.  My oncologist has said he would leave it to me when I start tamoxifen sometime during the radiotherapy. I decided to start on Monday. That way I have a bit of time to see if I have side effects to report to him at the next appointment. Anyway, next Friday, a small celebration will be due. Diagnosed in January, mastectomy in February, chemotherapy starting in in April, radiotherapy in July. I feel I was swept away by this wave, having handed my body over to the medical profession and I am hoping to gain some control again soon.     ... View more

Today was my 7th (out of 15) session and I feel the skin getting quite tender. Not even sure it’s the skin. Could also be the tissue underneath. I still have very little sensation in the remaining skin after the mastectomy which makes it hard to differentiate.  I also notice the reappearance of joint pain. A few years ago I started to get joint pains, usually hips or knee but not continuously. While on chemo, nothing at all. Now, as the drugs disappear slowly from my body, my right knee is flaring up badly. It’s the soft tissue around the joint tat is swollen. I wonder whether this hormone related and, while on steroids, no problems noted. Will have to quiz my oncologist. Has anyone else noticed this?   Oots ... View more

Hi all   10 more to go for me. It feels definitely like the easiest part of the treatment for me. I feel I’m on the home straight. Holding my breath is fine but I am also getting tired and some days I have a nap when I get home. That’s highly unusual for me and I am unsure why. It’s clearly not that bad a treatment and the journey is only 2 hours there and back. I wonder if it still has to do with fatigue after chemo and perhaps feeling a bit more relaxed for the first time in ages? Or is it real?   Oots   ... View more

Just got back from my 1st session too. It was no problem at all and compared to the operation and chemotherapy a breeze. Lashings of E45 have been applied. The only funny thing was the radiographer. A lovely young woman with great knowledge, people skills and authority. I swear she looks like sixteen and I felt like asking if her mum knew hat she was up to. 😀 It sounds we all had a good experience at our first session today; fingers crossed it stays that way.  Onwards and upwards!    Oots ... View more

My hospital is in north London and about 30 to 40 minutes drive away. I will be collected by taxi each day. In a way, I would prefer to drive myself because it provides a distraction but with the traffic and the potential fatigue, I thought it might be better not to.  I saw my oncologist yesterday. He is a very nice man. I need to go on tamoxifen too but he said he would leave it to me when I start. Either during or after radiotherapy would be be perfectly ok.  He did say that radiotherapy will not nearly be as tough as my four cycles of TC. Fatigue and skin reaction being the most likely problems. Hurrah - music to my ears! He also said that I would need 4 to 6 weeks post chemo to recover to some sort of normality after chemo and that I could start to challenge myself a bit more physically once the radiotherapy is over.  I came away feeling very positive and while I’m not looking forward to being ‘fried‘ on a daily basis, the end is in sight. Every time I have that thought, I get a little bit excited. Just knowing that I won’t be ‘floored’ again by another round of TC next Tuesday is fabulous. I remember sitting there with an infection after my mastectomy, having found out that I would need three months+ of chemotherapy, thinking that this was such a looooooong process. Nearly there now! ... View more

Hi all   I am starting my radiotherapy on the 8th July and it will be all done after 3 weeks. I can’t help feeling excited that it will be all done soon.  I was diagnosed early January, had a mastectomy (left breast) on the 1st February and had my last chemotherapy (TC) on the 18th June. Today is the first day I am feeling well again. Not bouncing round but the worst of fatigue, nausea and pains have stopped. Yay!  I had the planning session two days ago. As everyone with radiotherapy to the left side, I had to practice holding my breath for 30 seconds. I was surprised that I managed OK. I thought that with my current level of fitness it would be harder. Now I am paranoid that it was a glitch and I won’t be able to do it on the day. I might have a few sneaky practice sessions before then.  I don’t know how bad radiotherapy will be but surely it will be easier than the mastectomy and the chemo?    Oots   ... View more