Breast Cancer Now Forum

Hi Wolvesgirl (and everyone), It’s great to hear that you are doing well, and have got back to all your fitness activities.  As you say, it’s a big difference to this time last year, when we were all in our first few chemo cycles and struggling with the side effects.  I remember when you ended up in hospital, and how glad everyone on the thread was when you got back home.  This time last year I had just had my second EC treatment, my hair had all fallen out and everything tasted disgusting.  This year I am feeling fine and would be able to do all my normal activities if it wasn’t for the COVID-19 restrictions - as I am still having Herceptin/Perjeta antibody treatments in the chemo unit every three weeks, I have been told by my oncologist to keep to the shielding rules (apart from walks outside for exercise) so as to minimise the risk of any infection being brought into the unit, where obviously most people are on full chemo treatments.  I have had 15 of the 18 treatments, so just three more to go.  Thankfully they don’t have much in the way of side effects, so I have been back full-time at work since mid-February and have been fine even though we have all been working long hours due to the impact of the lockdown on our clients (I work for a dementia charity).  I normally work in GP-based clinics and out in the community, but none of that is possible so we are all working from home and running our services by Zoom/phone. I am on bisphosphonates, but a daily oral treatment (ibandronic acid tablets ) rather than Zometa.  This is to continue for another 2.5 years.  The tablets are a bit of a faff to take, as you have to stay upright/cannot eat for an hour after taking them, but I have got used to the routine.  Thankfully you can move around while upright, so I just take the tablet before I have my shower, get dressed and make my breakfast, and the hour passes quickly.  I am on Adcal too, but so far I don’t have any side effects from that.   The oncologist said that she could discharge me from oncology when I had my last three-monthly review with her at the end of July, but as I still had five treatments to go at that point, I asked if I could have a final review with her at the end of October around the time of my final treatment.  After that, she said I should contact the GP/BCN team if there is a problem. My BCN team asked me in my post-surgery check up back in February if I would be interested in going on a Moving Forward course (run by Breast Cancer Now), and I said that I would.  Obviously this was delayed by COVID, as it was a face-to-face course, but I got en email recently saying that they are now offering an online version.  I have signed up for this, and wondered if anyone else on the thread has done the course or is planning to do it soon?  I think that it focuses on adjusting to finishing treatment, keeping healthy, and watching out for any issues in the future.  I hope that all on the thread are doing well.  Much love to everyone. Bkackcat xx         ... View more

Hi Daisy, So sorry to hear that you have to have more treatment, but it’s good that your team are being so careful and offering you additional therapies to take account of the one remaining lymph node.   I’m on a very long treatment journey too, as my tumour was HER2+ and so my total time in active treatment will be 14 months (chemo Aug-November 2019; mastectomy and ANC January 2020; radiotherapy March 2020 and herceptin/perjeta targeted therapy infusions Jan - Oct 2020).   I did have the option to have less treatment, as I had a complete pathological response to chemo and so the radiotherapy was optional, but I feel that my MDT know best and so I have accepted any additional treatment they have offered.  I am getting a bit fed up now of going to the chemo unit for the infusions and being cannulated, but I am pleased to have the chance to have all 18 cycles as some people have had their targeted therapy treatments shortened due to COVID-19.  I have been back at work full-time since February and just try to take the infusions in my stride, as they don’t cause much in terms of side effects apart from hot flushes. I found that I had no side effects at all from the radiotherapy and that it was nothing more than a minor inconvenience (due to the travelling time).  I hope that it will go smoothly for you too, and that you will not have any side effects from the oral chemo.  Like the targeted therapies, the oral chemo seems for most people to be less harsh than the IV chemo.   We will get to the end, even though it is a long journey.  The main thing is that we take all the steps to have the best outcome possible, even if it takes a while.   Take care, and much love. Blackcat xx       ... View more

Hi Wolvesgirl, Just a quick message to say that this is brilliant news!  I know how stressful scans are, and it’s not surprising that we are all anxious about them given what we have all been through over the past year.  I can hardly believe that it is a year now since most of us in the August group were being diagnosed and starting treatment. I hope that you will have a relaxing day, and that you will be able to do something really nice to celebrate the good news.  Must get back to work now, as I have calls coming in on two phones (sadly the lockdown is creating a lot of pressure on people living with dementia and their carers, so I am incredibly busy).  I don’t have much to report, except that I have completed 12 out to the 18 cycles of herceptin/perjeta infusions and am doing fine. Take care, and much love to you and all on the thread. Blackcat xx   ... View more

Hi everyone, Great to hear how you are all doing - I can’t believe it’s over nine months since we started out together on the chemo journey last August! Spottycotty - I’m so glad to hear that you got checked out and that everything is OK.  I haven’t much news to report, other than that I’m still going for the three-weekly Herceptin/Perjeta infusions (cycle 10 of 18 is next week), which our hospital has moved to the Nuffield hospital nearby to keep oncology patients away from COVID-19.  I’m also on bisphosphonate tablets and Adcal.  My radiotherapy finished on the day lockdown started, so seven weeks ago now, and I haven’t had any side effects but am still using the R2 waterjel cream which was prescribed by my GP and seems to be excellent for protecting the skin.  My hair is growing thickly and is about four inches long now, so could really do with a cut as it is getting to have a bit of a wild lockdown look!  I’ve been back at work full-time for almost three months now, although working from home as the Herceptin/Perjeta treatment has put me on the 12-week shielding list because it can affect the immune system.   Much love to everyone on the thread! Blackcat xx       ... View more

Hi Hollyleaf,   I’m sorry to hear that your surgeon didn’t get as full a clearance as hoped for, and that you may now have to have a mastectomy.  I had a mastectomy and axillary node clearance at the start of January, with one night in hospital and a drain for four days.   After three weeks I was feeling pretty much back to normal and had almost full movement in my arm.  I went back to work full-time six weeks after the surgery, and two weeks later had three weeks of radiotherapy (which I went to after work, and had no side effects).  The recovery from the op was quite quick and straightforward, and I think that it had been the same for others on the forum too.   I chose not to have a reconstruction, so I’m afraid I can’t help with any information about implants.   I have found that it doesn’t bother me at all being flat on one side, and that I don’t even notice now that I am wearing a prosthesis.  Your BCN should be able to give you more information about the different types of implants available, and whether or not you would need further operations.    My BCN spend a hour with me going through all the options and showing me photos of various outcomes, and I considered all of them (including recovery times and whether I would need further surgery later).   I am glad that I had all the information and time to choose my preferred option, and I am happy with my choice not to have reconstruction.    I hope that you are able to get hold of all the information you need,  and that all goes well with your radiotherapy (and surgery in due course).  I finished my radiotherapy on the day the lockdown started and was also getting a bit worried about going for treatment, but the hospital had lots of social distancing and infection control measures in place, and so it felt quite safe.  I’m sure that your hospital staff will look after you well.     Take care, and let us know how it goes.  Love to all on the thread.   Blackcat xx     ... View more

Hi Jools123,   I’m just finishing my radiotherapy at St James’ in Leeds, with one final session to do tomorrow.  Like you, I have been a bit worried about visiting such a large hospital, particularly as up to early last week the waiting rooms outside the radiotherapy machines were full of people all sitting closely together.  This contrasted with my local (smaller) hospital where I go for my three-weekly herceptin/perjeta infusions, and where as early as ten days ago we all had to fill in a COVID-19 questionnaire at reception, were not allowed to bring anyone into the waiting area or treatment room, and where the cancer care centre has been separated off from the rest of the hospital.  At St James’ there have been new measures introduced since last Wednesday, with chairs separated 2m apart in the waiting rooms, staff continually wiping down equipment and door handles, and patients being asked to wash hands on entering the department, and before/after treatment.  Any extra objects that could carry infection, such as magazines or the baskets where we used to put our clothes in the changing rooms, have been removed.  We were also given a leaflet asking us not to attend if we have a cough or other symptoms.  It feels as safe as it can be in the current circumstances.  As you say, the radiotherapy is important for us in reducing recurrence risk, so the benefits doubtless outweigh the risks of being in the hospital for treatment. The hospital itself is a beautiful facility, with shops upstairs in the main atrium and even a grand piano played by volunteers.    The actual treatment is fine, and lasts only a few minutes each time.  The radiographers are all lovely, and make you feel at ease.  You get to watch some wonderful photos which people have sent in of Yorkshire while you are in the machine, and also listen to music if you wish.  I have had no side effects from the treatment at all, and am having the radiotherapy while working full-time.  I returned to work 5 weeks ago, after having a mastectomy/ANC in January following chemo (2 x EC and 4 x herceptin/perjeta/docetaxel, to which my tumour had a complete pathological response).  The radiotherapy nurses told me that there may be some side effects such as tiredness or a skin reaction after the treatment ends, but so far, so good.     All the best for your treatment!   Blackcat xx     ... View more

HI Al1and,   Yes, our immune systems are suppressed just with the Herceptin, as (like the Perjeta) it is an antibody treatment.  The suppression is obviously not nearly so marked as when on chemo, which is why we can go back to work, but with a novel virus such as COVID-19 we become at risk.  If you  have not already had a normal flu jab, you will probably be offered it as it is available free to people on cancer treatment.  You have to check with your oncologist at what point in the cycle you should have it when you are on chemo.  I was on a three-weekly cycle and had to have the jab at the end of the three weeks when my neutrophils were higher, but I’m not sure how it works if you are having weekly cycles (which I guess you are, if you are on Paclitaxel).  It won’t help with COVID-19, of course, but it will at least provide some resistance to the common flu which is also circulating at the moment.    As for hair loss, I chose not to use the cold cap because the chance of retaining my hair (or at least some of it) was only 30% with the chemo regime I was on.  I lost all my hair 12 days into the first cycle of EC, and it fell out in huge clumps over a weekend.  The falling out was preceded by a prickling feeling, so I knew what was coming.  I had already arranged to have a wig fitting and had got a wig which resembled my natural hair, so I just adapted to wearing that and it has been OK.  My hair started growing again when I moved on to the Herceptin/Perjeta/Docetaxel regime, so you might in fact be fine - EC is much harsher on hair than the taxanes like Docetaxel or Paclitaxel (and Paclitaxel is gentler than Docetaxel).  My hair is now about 3-4cm long and quite thick, but is coming back curly and initially emerged in a variety of colours on different parts of my head!  Now it seems to be settling back to its natural brown colour, thankfully.  Once it is a bit longer I will ditch the wig and get it cut into a proper style.     It’s good that you are managing well after the first treatment, and I hope that the next ones go well too.  I think that side effects do increase slightly as the cycles go on (my oncologist said it is due to the cumulative effects of the drug building up in the body) but I found that they were still manageable.  Strangely enough, the effects of the taxanes can emerge a long time after chemo - for example, my toenails began to fall off only a couple of weeks ago (but luckily there is always a nice new toenail growing underneath!)   All the best with your treatment, and take care.   Blackcat xx   ... View more

Hi al1and,   I am currently on three-weekly Herceptin/Perjeta infusions, after having completed 6 cycles of chemo (2 x EC and 4 x Docetaxel/Herceptin/Perjeta) between August-December 2019, followed by surgery (mastectomy and axillary node clearance) in January 2020.  I have also just completed 2 weeks of radiotherapy, with one more week to go.  I returned to work full-time one month ago, and am having my Herceptin/Perjeta infusions last thing on a Friday so that I have time to recover over the weekend.  I have found that the side effects are minimal compared to having these drugs alongside chemo.  I have slight digestive problems (stomach discomfort and diarrhoea) on the evening after the treatment, accompanied by some blurry vision and some joint/muscle aches on the following day.  Other than that I feel OK, and am fine to go back to work as normal on the Monday.   One problem that has recently arisen due to the escalation of the Coronavirus threat is that targeted therapies such as Herceptin/Perjeta do compromise your immune system, so I was told at my latest treatment last Thursday that this places me in a high risk group in relation to the virus.  This means that my work has had to do an individual risk assessment for me, which has resulted in me being told to work from home rather than in the office or out in the community (I work in frontline health care).  Up to last Thursday I had also been travelling to my radiotherapy appointments by train after work, but now I have been told by my treatment team to use the patient transport minibus (which takes much longer) instead to reduce the risk of coming into contact with crowds.  I had really been enjoying getting back to a normal lifestyle over the past month, as I have been feeling well, so it is disappointing to have to adjust my working practices but I know that I have to take the advice of my team and that the current situation is exceptional.   I hope that your chemo goes well, and that in due course you will get back to work while on the Herceptin/Perjeta.  It is certainly a powerful combination, as it completely dissolved my tumour - after the second cycle of Herceptin/Perjeta/Docetaxel, a breast MRI showed that only the titanium clip could be seen, with no evidence of the tumour, and this was confirmed by the histology report after surgery.  The result was so good that I was told I did not need to have radiotherapy, but I chose to have it as a belt and braces approach.   All the best with your treatment - take care.   Blackcat xx             ... View more

Hi everyone,   Spottycotty - So sorry to hear about your experience during the bone scan.  I can understand how worrying it is, but your team is obviously being very thorough and making sure that you are being fully checked out.  Scans show up all kinds of things, such as previous minor injuries to the bones, so hopefully anything that they have seen will not be of concern.  I will keep my fingers and everything else crossed that it turns out well for you.  Please let us know how it goes, as we will all be thinking of you.   Wolvesgirl - What a horrible time you have had: a hospital stay is the last thing you deserve after the chemo and all the other treatment you have been through.  It’s good to hear that they have found out what was causing the pain, and that you are now getting the right treatment and follow-up.  Make sure that you take things easy, and I hope that you are soon fully recovered.    Hollyleaf - It’s good to hear that you are getting your arm movement back, and also that you are feeling more positive and getting rid of the last of the chemo symptoms.  I think it’s definitely true that you are over the worst of the treatment now - as many others on the forum have said, I have found that the chemo is the most challenging, then the surgery, with the radiotherapy much less of an issue.   Lisaloo - So pleased to hear that the mastectomy went well, and that you are feeling OK.  It is another big milestone achieved in the treatment journey.  Take it easy, and I hope that you will have a speedy recovery.   JulieME - Good to hear about your clear results from the colonoscopy, and also that you have had the portacath removed.  I hope that the eyelash problem improves soon - I had the same issue with a few remaining long eyelashes which drove me mad, but they very soon dropped out, to be followed by a set of full set of short eyelashes which are now almost at normal length.    My news is that I have had my first week of radiotherapy at St James’ in Leeds, and that it has been fine.  The treatment takes only a few minutes each time, and I have not had any skin reactions or other side effects.  I am travelling there by train after work, which is not too bad as it only takes 23 minutes (plus about 10 minutes by bus to the door of the radiotherapy dept).  Luckily the trains are not busy, as I am going in the opposite direction to most commuters.  The only drama I have had is that on Tuesday my treatment was delayed by 40 minutes as a machine had broken down, and when I tried to leave the dept at about 6.35pm, I managed to get stuck between two sets of doors that had locked automatically behind me.  I could not get a phone signal as the corridor was below ground level, so wondered if I would be there all night.  Luckily a cleaner came along after about 15 minutes and released me. When I told the radiography staff about it the next day, they were very apologetic, as they are meant to accompany any patients still there after 6.30pm to the exits, and to let them through the doors with their pass.  Hopefully it won’t happen again!  Other than the radiotherapy, I will have my third post-surgery cycle of herceptin/perjeta infusions next Thursday (cycle 7 of 18 in total), and am getting used to the morning routine of taking the bisphosphonate tablets.  I have to do anything which involves bending - such as pet feeding or taking in the milk - before taking the tablet, then stay upright for an hour, while remembering not to eat/drink for 30 minutes. I am really missing my early morning espresso, but I make one as soon as I get to work and so it is not too bad.  I am still really enjoying being back at work, and so far am not feeling tired (although I know that as the radiotherapy progresses, tiredness is a likely side effect).  As I have 210 hours of accrued leave to take, I guess I may use some of it if I get tired over the next two weeks.   Love and hugs to everyone,   Blackcat xx ... View more

Hi to everyone on the thread,   I hope that you have all had a good week, and that everyone is surviving the stormy weather.  Here in York we have quite bad flooding in the city centre, as often happens at this time of year, but thankfully the river defences are working well and preventing a repeat of what happened in 2015.   Wolvesgirl - I hope that your chest pain is better, and that all goes well when you have the 24-hr ECG.  I understand from my oncologist that chemo can sometimes damage the heart (as can herceptin, which I am on), but that in most cases any damage is not permanent.  It’s so difficult, isn’t - we don’t really have any choice about having the chemo, not can we control the side effects it brings.  I’m interested to hear that you are off to the Outer Hebrides in May, as I am originally an island Scot (my mother came from the Isle of Lewis, and my father the Isle of Bute, where I was born).     Lisaloo - I hope that all is going well with your decision about surgery and reconstruction.  You may well find that your eyebrows and eyelashes start growing again soon - for some reason mine came back very quickly over a period of about a week, and my eyelashes are now getting quite long!   Hollyleaf - I hope that by now the drain has gone, and that your recovery is going well.  It is such a relief to when you can move about freely without being connected to tubing.  I’m glad that your hair is coming back too.   Spottycotty - I hope that all went well with your final radiotherapy sessions, and that you are not too tired after all the treatments.   It will not be long until you are off to the Maldives!   My news is that I have just completed my first full-time week back at work, which I have thoroughly enjoyed.  It has been wonderful not to think about cancer treatments and side effects, and indeed not to think about myself at all, but to focus on what I can do to make life better for other people (I work for a charity supporting people living with dementia).  One part of my role is to run GP-based clinics, and it feels so strange to be on the other side of the desk, and for once not a patient.  I start my radiotherapy on 2 March at St James’ in Leeds, and the hospital has kindly given me slots at 5.30pm so I can leave work a little early and go straight there.  I had my second post-surgery infusion of herceptin/perjeta on Thursday at the end of the working day, and was pleased to find that I didn’t have any side effects afterwards other than a little bit of digestive upset about a couple of hours after the treatment.  By the next morning I was feeling fine and able to go to work.  I will start my bisphosphonate tablets (ibandronic acid) plus Adcal tomorrow, and am hoping that they don’t cause anything drastic in terms of side effects.  It will be a bit of a pantomime in the morning, as I know I that will have to stay upright for a hour after the tablet, take it with a large glass of bottled water, and then not eat anything for 30 minutes - plus remember to take the Adcal exactly four hours later!  I have set my Siri and Alexa to give me reminders so that I hopefully don’t mess it up.    I hope that everyone will have a relaxing evening and a nice day tomorrow.  Much love and hugs to you all.   Blackcat xx ... View more

Hi Wolvesgirl and everyone,   I hope that everyone is doing OK.  Wolvesgirl - I’m glad to hear that you are now feeling better after the chest pains, which must have been frightening (particularly so early in the morning).  I’m sure that the nurse is right that our systems have been battered by all the treatment, and that it will take a while for us to recover.   Spottycotty - I hope that your ribs are now less painful and that the radiotherapy has been going OK.    Hollyleaf - I hope that your recovering is going well, and that you have got rid of the drain.   I am now almost 6 weeks after my mastectomy/ANC, and am doing fine.  I had a physiotherapy “Return to Movement” group workshop with a physiotherapist from our Breast Care Unit last Friday, and she says I have recovered almost 100% mobility and strength in my arm (which is certainly how it feels).   I had a meeting with a radiotherapy specialist oncologist from St James’ in Leeds last Thursday to decide whether or not to have radiotherapy, and again - as with my own oncologist and surgeon - I was told that it was up to me.  She said that if it had been the left side which was affected, they would have advised me not to have radiotherapy due to the slight risk of heart damage outweighing possible benefits, but as it is the right side, they were happy for me to have it if I wished. It will apparently be a “light touch”, with 15 treatments just to the chest wall.  I have decided to have it, so that I know that I have done everything possible to prevent recurrence, and I will have my planning scan in Leeds on Friday.  The radiotherapy itself will probably start in about 4 weeks time.   The other appointments I have had recently have all been dental ones - five appointments over the past week or so!  These are to prepare for bisphosphonate treatment, and I have been having some very old fillings removed and replaced  as they had a chip/crack in them, and might be liable to fail in the near future.  As two of the fillings were put in in 1988, I think I have had good value out of them!   The other news I have is that I am going back to work full-time next Monday!  I have been building up to this over the past couple of weeks by going in to the office for half a day, or working full days from home.  Being able to work has made me feel so much better, and I am so looking forward to establishing a new normal, and not thinking all the time about cancer treatments and symptoms.  I will still have my three-weekly infusions of herceptin/perjeta until November, but the hospital have scheduled these for the last slot of the day on a Thursday, and work will allow me to work from home on a Friday if necessary, so I am hoping that I will be OK.  My radiotherapy appointments will also be scheduled at the beginning/end of the day so as not to interrupt work too much.  As I have been off work for 7 months and had taken almost no leave for 2019 when I was signed off, I may also use up some of my accrued leave during the radiotherapy if I feel tired or have side effects.  We will see how it goes.     Much love to all on the thread, and I hope that you are all surviving the wild weather!   Blackcat xx                   ... View more

Hi Hollyleaf,   You’re not a wimp at all - it’s normal to feel afraid of having a general anaesthetic, particularly if it’s the first time.  I felt anxious too a few days before my surgery, but on the day of the op I was totally calm as soon as I arrived at the hospital, because the staff were so reassuring and didn’t give me any time at all to worry.  I’m sure it will be the same for you too. The risks of having serious problem from a GA are extremely low.  My hospital gave me a leaflet about having surgery with a link to a website (the Royal College of Anaesthetists) which explained any risks and the care that is taken to avoid them, and I found this really helpful.  The anaesthetist will talk to you before the op and will monitor you throughout to make sure that everything is OK, so you will be well looked after.    The things that helped me most were: 1) reminding myself that I didn’t really have a choice about having the surgery - it wasn’t an elective operation, but one I needed to get rid of the cancer and ultimately save my life.  So as I didn’t have a choice, there was no point worrying about it; 2) reading posts on this forum, and the Macmillan one, from people who had just been through surgery.  This gave me confidence, and I knew I could get through it too; 3) preparing early for the stay in hospital - I bought anything I needed (e.g. front-fastening pyjamas; post-surgery bras, shower wipes) and packed my hospital bag a few days before, and then did activities I enjoyed/went out with friends in the couple of days before so I would be relaxed and not rushing to prepare things at the last minute.   A week today it will all be over and you will be recovering (you may even be home - I was discharged at 9.30am on the day after my op, which was a mastectomy/ANC and so more challenging than yours will be).  Once you are home, you will find that you improve quickly and can do more things every day.  I just had paracetamol for pain relief, and only needed to take it for a couple of days.  The drain is a bit of a pain because it restricts how you move around/sleep,  but it is only for a few days.  If you don’t have a V-pillow and small heart-shaped pillow to support your arm, I would recommend getting both, as these have been the two items I have found most helpful (particularly when the drain is in and it is difficult to sleep/sit comfortably).  I am still using both now.    I have been surprised at how quickly I have recovered from the surgery, and I’m sure it will be the  same for you too.  It is a month today since my op, and my scar looks totally healed. I have recovered almost normal mobility in my arm, and am able to do most household tasks with it although I obviously take care not to lift anything heavy.  I was also able to put on clothes which go over my head about 8 days after the surgery.  I am going out and about as normal.    I have an appointment with my GP tomorrow to plan going back to work, although I am still waiting to know if/when I will have radiotherapy (I have an appointment with the radiotherapy oncologist next Thursday).  I had the first of my 14 post-surgery herceptin/perjeta infusions on Monday and this went well with no side effects other than a slight feeling of queasiness for an hour or so after the treatment.  The session took 8 hours because I had an echocardiogram first and had to be observed after the infusions since I have had a break from the drugs, but the next sessions should take only 1.5 hours and the hospital will schedule them in the late afternoon so I can combine them with work.  So I can see the light at the end of the very long treatment tunnel, and am feeling confident that I will be able to return to a more normal life - and to being useful - very soon.     All the very best for the surgery next week - we will all be thinking of you and cheering you on.     Much love to you and to all on the thread.   Blackcat xx       ... View more

Hi all,   It’s great to hear how everyone is doing, and to see that we are all progressing on to the next stages of treatment.  Spottycotty and Wolvesgirl - it’s good that you have started radiotherapy, which is so much shorter, and hopefully much easier, than the chemo.  Julie - I hope that all goes well with the results from your second surgery.  Hollyleaf - I hope that you are getting some relief from the side effects and also the dreaded hot flushes.   I had my post-op review with the surgeon yesterday, and got my dressings off, which was a relief as they were beginning to make my skin itchy.   All is healing well, the scar is long but very neat, and I have recovered pretty good mobility in my arm already due to the arm exercises.   I did have a little bit of fluid swelling (a seroma) under the arm where the drain had been, but the nurse syringed this off yesterday and the skin is now flat again.  I am wearing my ASDA post-surgery bras, which are proving to be really comfortable (although not the prettiest) and have a pocket for the softie prosthesis.  The surgeon also gave me my histology results from the surgery, which he said were the “best possible outcome” I could have.  The histology report confirmed what the post-chemo MRI had indicated - that the tumour and one affected node had a complete pathological response to the chemo,  with no cancer at all remaining.   There was also no evidence of cancer cells in any of the other lymph nodes, of which I apparently had the unusually high number of 39 (now reduced to none).  I felt sorry for the poor pathologist who had to identify and test all those nodes in the strip of tissue they removed from my underarm, as apparently it is quite a difficult task.    My surgeon said that the multidisciplinary team have decided that because I have had a mastectomy/ANC and a complete pathological response to chemo, it will not be mandatory for me to have radiotherapy, but that I can choose to have it as a “belt and braces” approach if I wish (in addition to the 14 continuing treatments of herceptin/perjeta which have always been planned, and possibly bisphosphonates in due course).  I said that I would like to have the radiotherapy, as it seems sensible to take advantage of all the treatments on offer to help prevent recurrence.  I have an appointment with my oncologist next Thursday to discuss this, plus an appointment with the radiotherapy oncologist at the start of February.  Radiotherapy is not offered in my local hospital (York) and so I will have to travel to St James’ in Leeds, but luckily our local cancer charity offers a free minibus service to transport radiotherapy patients from York, for whom appointments are grouped together in the middle of the day at the Leeds end.    I have been offered the chance by my BCN to take part in some “Return to Movement” group exercise sessions, which I have said I will attend.  Has anyone else been to these?  I’m not sure if they are a national initiative like the LGFB workshops.  I was also given lots of booklets about “Moving Forward” courses and events, but I think I still have some way to go on the treatment journey before signing up for those.    I hope that everyone will have a good weekend - enjoy whatever you are doing!   Much love to all.   Blackcat xx     ... View more

Hi Hollyleaf,   It’s great to hear that you have had your last chemo treatment - congratulations!  I hope that all goes well with your appointment with the surgeon on Monday.   I sympathise with you completely in relation to the hot flushes.  My periods had stopped about a year before I was diagnosed, and I was getting hot flushes which I was treating quite successfully by taking Menopace Plus.  I had been offered HRT by my GP, but - ironically - had preferred to try a natural treatment due to the increased breast cancer risk of HRT.  On diagnosis in July, my oncologist told me to stop taking any herbal supplements as I was due to start chemo imminently, so I had to stop the Menopace.  The result was that the hot flushes came back with a vengeance, particularly at night, and I had to try to find another way to reduce them. My solution, which is working quite well, has been to buy a very light duvet (one of the M&S washable ones with a printed cover, although I am using mine with a normal duvet cover), plus a tower fan with a remote control which I have right by my bed.  I keep the remote under my pillow, and when I am woken up by a hot flush, I immediately give myself and under the duvet a cold blast from the fan, which can also be set to a quiet, gentle setting for sleeping if need be.  This seems to reset my body thermostat, and I usually fall asleep again immediately.  I also keep a metal water bottle with iced water by the bed so I can have a drink if I wish.     I found that both the steroids and the chemo made my hot flushes worse, and my oncologist said that unfortunately this was to be expected.  The flushes have definitely improved since I finished chemo, although it was not immediate (my last treatment was seven weeks ago, and they improved about two weeks ago).  Due to the surgery, I have not resumed the Menopace, but will probably do so once my BCN says it is OK.    I hope that you find some relief from the flushes, which are horrible.  In relation to the fingernail problem, it might be worth trying Evonail or similar if you are not already doing so.  I have been using Evonail throughout and have kept all my fingernails in quite good condition, although they do have a few ridges due to the docetaxel.  Take care, and much love.    Blackcat xx ... View more

Hi Lisa (and everyone),   It’s great that you only have two of the Paclitaxel to go, and then you will be on to the surgery.  I found that the surgery honestly is nowhere near as bad as the chemo, as people on this thread had said to me.  Like you, I had not had an operation or a general anaesthetic before, so was a bit concerned in the days beforehand about what these things would involve (particularly the idea of being put under the anaesthetic).  However, on the day of surgery I had no time to worry at all, as from the point I arrived at the hospital I was kept so busy with appointments (with the surgeon, anaesthetist, theatre nurse and another nurse who gave me a surgical gown and did my obs) that before I knew it I was being walked down to the operating theatre.  I actually felt quite chilled out at that point, because everything felt so well organised and reassuring - it was clear that my operation was just one amongst many that day, and that it was completely routine to the staff,  even if it was new to me.  Once I was in the anaesthetics room, all I can remember was the anaesthetist putting a cannula in my hand, and literally the next thing I knew was that I was in the recovery room, talking to a lady in the opposite bed who I had met in the waiting room.  A few minutes later I had been wheeled back to the ward, and was having a nice black coffee and a tuna sandwich.  An hour later, I was able to walk around, and I spent the afternoon chatting to other patients as they came and went after surgery.  I was in the “Extended Stay Area” Ward where most patients were discharged after a few hours, but one lady and I were booked in to stay all night.  During the time I was there, I saw about 20 patients come back from surgeries of all kinds, and all of them recovered quickly.  It made me realise that surgery is much less frightening than I had imagined.  All of the staff who looked after me were brilliant, too, which I’m sure will be the same for you.     There a few things which have really helped me during my night in hospital and the first week post-op.  As it is difficult to wash properly with the drains in, and you are not allowed to shower,  shower/bath wipes are great (I got the Drench brand).  Front-button pyjamas are a must so that staff can check the wound and drains.  My V-pillow has been wonderful, as otherwise I don’t know how I would have managed to sleep with the drain in.  I am still using it now to avoid rolling onto my operated side.  The heart-shaped pillow I got from my BCN is also great to support the arm at night, or when sitting during the day.     I am doing my arm exercises three times a day and recovering good mobility on my right side - so much so that I am now using my right arm almost as normal (but avoiding any lifting or pulling).  The numbness under the top of my arm is going, to be replaced with a slight tingling feeling, but this is not unpleasant.  I am feeling well and sleeping well, and looking forward to getting the dressings off next week as they are pulling a bit on my skin round the edges in the underarm area.   I am sure you will be fine with the op - if I can do it, anyone can!  I hope that everyone on the thread has a good weekend.  Hugs to all.   Blackcat xx   ... View more

Hi Wolvesgirl, Lisaloo79, Spottycotty, Hollyleaf and all on the thread,   Many thanks for your good wishes following my op last Thursday.  My recovery is going well - I had the drain out on Monday (four days after surgery), which was a big relief as the bottle was getting so heavy that it was making me walk like a hunchback!  I walked back from the hospital through our local park after having the drain out, and it was so nice just to be able to move normally without worrying about pulling on the drain tubes (ouch ...).  I stopped taking any painkillers on Monday morning, and have not needed them since.     I am doing my arm exercises three times a day as instructed, much to the amusement of my anyone who happens to be around at the time.  The exercises really help, though, and I am gaining more mobility in my affected arm every day.  I am doing most household tasks as usual, but just being careful not to lift or pull anything heavy with my right arm.   I don’t have any visible bruising from the op, which surprised me as when I had a biopsy/clip inserted a few months ago, my whole chest area went black and blue.     I have an appointment next Thursday to get the dressings removed, and also to get the pathology report from the op (if it is available - if not, I will get it on the following Thursday when I see the oncologist).  One question I am going to ask is whether I will need to have radiotherapy as a follow-up treatment (in addition to the 14 additional cycles of herceptin/perjeta infusions which I will start on 27 Jan).  Radiotherapy is apparently given routinely after a lumpectomy (to deal with any cancer cells possibly remaining in the rest of the breast), but not after a mastectomy.  However, I see from the NICE guidelines on primary breast cancer treatment that recent studies show that radiotherapy can have a potential benefit in preventing recurrence after a mastectomy, so I will check what my oncologist says about this.  So far my oncologist has not discussed this with me, and I didn’t think to ask about it yet as I was focusing first on the chemo and then the upcoming surgery.   The other question I need to ask is whether I will be prescribed biophosphonates in due course, which my team has already mentioned as a possibility.  Hopefully any further treatment cannot be as unpleasant as going through the chemo was (I will not forget the ghastly effects of docetaxel for a long time ... ).    I hope that everyone on the thread is well, and that the final effects of the chemo are receding.  I think it does take a few weeks after the end of treatment to feel normal again, as my tastebuds are only just working properly over seven weeks after the last infusion.  I now have full feeling back in my fingertips and toes too, although my fingerprints are not back yet and I am still having to type in passcodes on all my electronic devices.   I hope everyone has a good weekend!  Much love to all.   Blackcat xx     ... View more

Hi Wolvesgirl,   Thanks for the good advice about listening to the body and resting.  I’m sure that you are right about the anaesthetic doing strange things to the body, as today I have felt everything from fine to exhausted at various points.  I have just had a bowl of chicken soup with some cranberry cheese and biscuits, have found a comfortable position propped up by the V-pillow, and so will have a rest in front of the TV, accompanied by my two black cats!   I hope that you are well and that you enjoy your evening.   Blackcat xx ... View more

Hi to all on the thread,   Many thanks for all your good wishes.  I had my surgery (mastectomy and axillary node clearance( on Thursday as planned, and was first on the theatre list so didn’t have time to get nervous!  The op took 3 hours, as the nodes were being removed through the breast incision in order just to leave one scar.  The surgeon said that everything went very well, and I was discharged early yesterday morning (just in time to make the hospital’s deadline for “discharge within 23 hours”, I guess).  The hospital team were wonderful, and made the whole process much easier than I anticipated it would be.    Since getting home I have been able to eat, get washed/dressed and move about the house as normal (although slowly due to the drain), and also slept quite well last night supported by a V-pillow.  My would is draining quite a bit, as is apparently normal after an ANC, but I am getting used to moving around with the bottle and tubing.  I am just on paracetamol for pain, which is working OK although I do have to be careful of sudden movements (particularly bending or twisting) which can really hurt.  I have started doing the arm exercises and have been outside for a short walk, and am trying to be as mobile as I can.    I am finding that my flat side is not bothering me at all in terms of appearance - I am wearing button-through patterned tops at the moment, and the difference is not really noticeable (I didn’t have a huge chest in the first place).  Once the drain is out, I will try out the softie prosthesis I got from my BCN, and also the post-surgery bras.  I am hoping to get the drain out early next week (it needs to drain 50ml or less before it can be taken out).   I hope that everyone is doing well!   Blackcat xx       ... View more

Hi all,   Just popping in to the thread with a quick update after my surgery yesterday - thank you all so much for your good wishes.  I was first on the list for my operation (mastectomy and axillary node clearance) yesterday morning, which was great as I didn’t have time to feel nervous at all.  The operation took 3 hours, and the surgeon said it went very well.  She removed all the lymph nodes via the breast incision, so I only have one wound and one drain.  I found that the recovery immediately after the surgery was quite quick (I was only in the recovery room for 15 minutes, then back in the ward being offered a drink and a tuna sandwich).  I was able to walk around (a bit unsteadily, but watched carefully by a nurse) one hour after coming back to the ward, and three hours after I was able to eat a proper meal.     I was discharged this morning, and am now at home.  The drain is a bit of a pain, as it is draining quite a lot due to the ANC, and is cumbersome to lug around.  I am just on paracetamol for pain relief, and am finding that I need to be very careful and slow when making certain movements to avoid pain (bending and twisting are problematic at the moment).  However I am not particularly tired, and am able to eat well (tastebuds have finally recovered from the chemo).   I hope that everyone else who has just had surgery, or is preparing for it. Is doing well.  Love to everyone.   Blackcat xx     ... View more

Hi Laura,   I had a CT scan shortly after my diagnosis (of chest, abdomen and pelvis), and it was a fairly quick procedure.  I did not have to wear a gown, as I was wearing nothing with metal in it (such as a bra with metal hooks) and had loose clothing on.  I was having a scan with contrast dye, and this involved having a cannula put in my arm - when the dye was flushed through, I was told  I might have the sensation of passing urine, although this would not be the case (thankfully  I didn’t feel anything).  The scanner is large and not at all claustrophobic, and my scan took only about five minutes.  The experience was much better than having a breast MRI.   My hospital gave me useful leaflet about the scan, which explained the process, the risks and what you could wear if you didn’t wish to change into a gown.  If you haven’t received a leaflet, it would be worth having a look on your hospital’s website, as the information might be there.   All the best for tomorrow!  Blackcat xx     ... View more