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Katielou2
Member
since
05-03-2015
26
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4
Hugs
06-04-2016
11:20
Hi Sue, I have had a similar experience and am a little further down the line than you are at present. I was diagnosed last February with lobular cancer, I didn't take in too much of the details of MRI results at the time and have not been able to bring myself to read pathology report/ consultant letters etc. I was initially treated with Letrozole and clinically and on repeat MRI the tumour had shrunk. I had a mastectomy in September with node clearance and was shocked that pathology report showed a larger area of tumour - 13cm - than MRI had found, also 11 out of 18 nodes affected. It was explained to me at the time that lobular cancer spreads in the breast tissue like a spiders web, so although 13cm it was not solid but a measure of area of affected cells. I don't think I have explained that very well - I have just fully put my trust in medical team to give me the most appropriate treatment and they seem optimistic that this is treatable. I have had 2 clear CT scans and just completed chemotherapy, radiotherapy due to start in next couple of weeks. We all deal with things in our own way, for me too much information would not be helpful, I am comfortable going with treatment plan recommended and not questioning things like risk of recurrence etc, I will deal with things as they happen. Good luck with your treatment.
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03-04-2016
09:27
Thank you very much for sharing your experiences, I'm optimistic I will be ok with the driving. Hopefully parking will be easy, I will need late morning appointments to fit with school day. I will definitely be planning some treats to get me through this next stage!
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02-04-2016
03:51
Hi Puddywuddy, sorry you have to cope with this diagnosis, the early days when you are waiting for results, treatment plans etc are the hardest, it does get easier. Like you I ignored changes in my breast for about 7 months for all kinds of reasons. I was diagnosed Feb 2015, initially treated with Letrozole to shrink tumour, then had mastectomy and node clearance in September. My tumour was big - 13cm and 11 out of 18 nodes affected, but CT scans showed no spread. I have just completed chemo and am about to start radiotherapy. The treatment is totally manageable, you will deal with whatever you need to in your own way and find a strength you don't know you have. I have been wracked with guilt with the thought that I have jeopardised my future and the impact that will have on my family by not seeking advice sooner, but what is done is done and there is no point dwelling on what might have been. I am reassured by the team treating me that there is every chance I will survive this, no one knows what the future holds but there are very effective treatments and you will get the very best care. Don't look for info on the Internet - stick with this site and McMillan is also helpful. I wish you all the very best in your treatment xx
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02-04-2016
02:53
Hi, I'm due to have radiotherapy shortly - planning session on 14th April, will have 15 sessions. I've had mastectomy and recently completed 6 cycles of EC-T chemo which I coped with very well. I'm not able to have the radiotherapy at a local centre, I will need to travel to a specialist centre which is an 85 mile return trip mainly on busy and congested motorways. I'm planning to drive myself to the majority of sessions, I am not a good passenger and my husband is not a confident driver on busy motorways! I have limited help from family due to their own circumstances. I also would have concerns if my husband was with me and we got delayed as someone needs to be home for son returning from school. Is my plan to drive myself realistic? How have you ladies coped with long journeys? I was lucky not to experience tiredness/fatigue with chemo and hope that radiotherapy will be as manageable. Any advice/tips re travel would be appreciated.
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10-03-2016
12:27
Hi Helen, cold cap definitely worth trying, it's pretty unpleasant initially, worst brain freeze you can imagine but you adapt to it after about 15-20 minutes and the feeling passes, helpful to take paracetamol and/or ibuprofen beforehand. Hair should be damp and protected with some conditioner prior to cap going on, good fit vital - ensure time taken to get good snug fit and have straps as tight as you can tolerate. I've just washed hair once a week with warm water and SLS free shampoo and conditioner, left to dry naturally or short time with dryer on lowest setting if any social events planned! It does extend time you are in unit but I've not found that an issue. There is a helpful website - Cancer Hair Care - well worth a look. Ive had a Hickman line in and it's been a godsend, veins not great so alleviates any worries about access, I would not hesitate to have a line in if offered. Good luck with your treatment, horrible as it may be you will get through it and it is a relatively short period of time. Make sure you plan some nice treats to enjoy on the days you are feeling better, really helps to have things to look forward to.
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08-03-2016
06:56
1 Hug
Hi Helen, I've just had my 6th and final cycle of EC-T today, I've cold capped each time and kept a reasonable head of hair, very thin particularly at front but I've not worn wig I got in readiness. Are you cold capping? I was advised to use mild shampoo so have done this through treatment but have purchased Nioxin and plan to start using this in a couple of weeks, I have also purchased some Biotin supplement but will discuss this with oncologist at next appt in 3 weeks time. Good luck with whatever you decide - worry about hair loss is not vanity, if it's important to you do whatever you need to xx
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22-02-2016
03:50
1 Hug
Just looking for some advice/reassurance. I had 2nd T a week ago after 3 EC. I've cold capped each time and thought I was doing quite well - hair thinned, probably by 50%, but I felt didn't look too bad. I was hopeful that I wasn't going to need wig. However on washing hair yesterday I lost loads, much more than previously - I feel very despondent as understood T generally kinder to hair. What is generally time frame for hair loss after chemo? When does it stop/slow down? When would you plan to go to hairdressers to improve style? I am having final chemo on 8th March and just want some idea of what to expect over next few weeks. Thanks for any advice/info you are able to share.
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27-01-2016
09:53
Hi Tina, I had 1st T yesterday after 3 EC and like you really worried about effect on nails. I've had no problems with EC, nails fine, just looked after them with lots of cuticle oil and hand cream. I was offered cold mitts and slippers to minimise potential effects on nails during T admin but found it too painful to continue with mitts after 10 minutes - I am also cold capping and it was just too much for me. It also felt very restricted to have hands encased in heavy mitts for 2 hours. Everyone copes differently, might be worth asking if these available to you and giving it a try. Good luck xx
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19-01-2016
09:41
1 Hug
Red Robin - Thank you for this info, I too have cold capped through 3 EC and still have good amount of hair but have gone very thin on top. I'm looking for help to disguise this, will be looking at these YouTube clips.
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17-12-2015
11:21
Hi, just wanting to tap into everyone's extensive knowledge and experience re hair loss. I was treated with Letrozole and Zoladex March to October this year and experienced significant hair thinning. i had first cycle of EC just over 3 weeks ago and cold capped - uncomfortable but bearable, hair full of ice when completed. No hair loss at all following this, not even usual everyday shedding. 2nd EC on Monday - cold cap just didn't feel the same, no ice on head on completion and since yesterday my hair is coming out when I run fingers through it. So my questions are - does cold cap slow normal shedding? Am I just experiencing loss of hair that would have been lost in last 3 weeks? Should there be ice in hair on completion if cold cap effective? What time scales are typical in relation to chemo and hair loss - it seems 2 days after 2nd cycle is a little soon for this to happen or could this be from 1st cycle? If anyone can help with info I would be really grateful.
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20-11-2015
11:14
Good morning ladies, hope everyone is doing ok, those of you who have started chemo hope SE still manageable. Ive had a very busy week with lots of appointments and catching up with friends, planning a quieter day today! All set for 1st EC on Monday, trying to keep positive and not worry too much about it. Looking forward to really special night out tomorrow, feels like I'm coming to the end of 'normal' life and stepping into a whole new world. I've been touched by how kind and supportive everyone has been, and so impressed with the care shown by professionals, as a health professional myself I know standards can sometimes slip but I feel so well looked after - it's these little things that will get me through this.
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16-11-2015
12:19
Hi Jane, I have sent you a friend request to be added to FB group, thank you for doing this. Kath xx
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11-11-2015
07:58
Hi Anne and Lee, it's getting busier in this group, good that we can all be there for each other. Well I had my repeat CT scan today - took 3 attempts to get cannula in, doesn't bode well for chemo, think I will need a line of some sort so hope this won't delay it!, I had flu vaccine on Monday, read somewhere it needed 2 weeks to work so just got it in, never had it before and my arm is still red, swollen and uncomfortable. I hope everyone who's already started is coping with SEs.
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10-11-2015
03:19
Hi everyone, I have previously posted in other threads but now find myself in this category! I am mum of 3, youngest is 12 and on autistic spectrum - he is really struggling with my diagnosis and I'm not sure how to broach subject of chemo! I was diagnosed in Feb, grade 2 invasive lobular, ER+, HER-, large mass and lymph nodes involved. I have had 7 months of Zoladex and letrozole to shrink tumour prior to mastectomy and node clearance which I had on 30th September. I have recovered very well from surgery but disappointed pathology results did not reflect clinical and MRI findings - tumour still 13 cm, 10 out of 17 nodes affected. I am due to have another CT scan tomorrow which will hopefully be clear as was initial scan in March. I am now due to start chemo on 23rd Nov, EC x3, T x3, then radiotherapy. Just need to get on with this, already seems to have taken forever to get to this stage. We are all following slightly different routes to deal with this, I have found the information and support offered by you all invaluable, I hope we can all support each other to get through these next few months. Kath xxx
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03-11-2015
10:35
Tina - big hugs to you, this is such an awful time. I'm in a similar position although slightly ahead of you. I've had mastectomy with node clearance but results showed tumour much larger than MRI indicated, can't bring myself to say how big!! I'm now waiting for another CT scan, can't shake off thoughts it has spread. Initially told chemo not likely to be of benefit but it's now looking like that is next step. Like you I can't stop crying and thinking the worst, just need to keep going and trust in medical team 🙏
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02-11-2015
03:37
Delly thanks for your wise words. I now have a date for CT scan, next Wednesday 11th, then will have to wait for results, to be discussed again at MDT, then wait to see oncologist - it's just drifting on and on, I really thought I would be much further on by this stage. I'm feeling really anxious, not coping very well 😥 , so worried it has spread. My husband has been brilliant but unbelievably has been referred to urologist urgently due to raised PSA, he has his appointment on Friday. I'm finding it so hard to deal with his worries on top of everything I'm going through! Can life throw anything more at us?
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22-10-2015
10:50
Thank you Delly - arm feels much better, had some more fluid drained from seroma, happy it's healing well. Results not great - feeling really upset again. Area of abnormal cells larger than indicated on MRIs, 10 out of 17 nodes affected. I now need another CT scan to check for any spread before a decision is made on treatment. I had been feeling quite optimistic that 7 months on Letrozole was having a very positive effect on cancer, now not sure. I feel I've gone back to start with all the unknowns and questions no-one can answer, pretty c*** isn't it??
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20-10-2015
03:48
Thanks everyone for taking time to reply - 3 weeks on I am feeling a lot better, upper arm still feels strange but bearable. I have been good at doing exercises and they are getting easier, beginning to feel that I may be able to drive again soon! Scar healing but feels tight - I had seroma drained last week and it's swollen again, I was warned to expect this, it seems to be affecting my back and shoulder blade the most. I am back at hospital tomorrow as pathology results weren't back last week, I will get it looked at again.
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12-10-2015
06:28
1 Hug
Thank you very much for the replies - I am feeling much better overall, taking it easy and accepting that this is going to take time to recover from. It is the sensitivity of my arm that is the hardest to cope with - not something I anticipated or felt prepared for. Wishing you all the best in your recovery xx
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10-10-2015
02:17
Im feeling really low today and just wondered how others had found their recovery from mastectomy and node clearance. I was diagnosed in February, had 6 months treatment with letrozole with good response and mastectomy with level 3 node clearance 10 days ago. I was discharged from hospital after 2 hours which I was prepared for but still found this quite shocking in some respects. My follow up appointment is later this week, expecting to also need radiotherapy. Overall I feel I am recovering well, drains removed after 7days, dressings all off since yesterday, wound looks clean (although much bigger than I anticipated). The hardest thing is how strange it all feels - so numb yet burning/stinging/buzzing sensations. The biggest problem is how my upper arm feels - really sensitive, finding clothing really irritates it. I've been out this morning and found car journey so uncomfortable - felt every bump, jolt etc. I had stopped taking painkillers couple of days ago but started to take them again last night. Everyone says how well I am doing but today I feel tearful and horrible - how long does it take for everything to feel better and for these awful sensations in arm and axilla to lessen? I know everyone's experience is different but just looking for some reassurance from others that have been through this. Thanks for any advice you are able to offer.
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