Home Cancer Expert Q&A Hub Ask a Healthcare Professional

Ask an Oncology Specialist Nurse | Liz Bradley

135

Comments

  • Blanka_CBlanka_C Posts: 346 Community Admin

    Good afternoon everyone,

    Hope you all had a lovely weekend and are staying safe. As Liz mentioned above, we're having a (free) expert webinar on cancer & the coronavirus tonight at 6pm (BST). Liz and @KarinSieger, our Emotional Wellbeing Advisor will be answering your questions live (don't worry, you won't have to use your camera or mic :).

    No need to register, simply click on the following link at 6pm: https://zoom.us/j/499732439

    If you're interested in getting to know more, have a look at the following thread:


    We hope you can make it. 🤗

    Blanka x

  • Tay100Tay100 Posts: 3

    Hi Liz, I was diagnosed with ovarian cancer stage 3c in March 2018. I have had a radical hysterectomy and total debulking, I had my last chemo in Dec 2018. My CA125 went from 9000 to 19. However over the last 4 months it risen steadily and is now 127. My consultant called and said that the CT scan I had a few weeks ago didn’t show anything. However she did say that this usually means that the cancer is back and growing somewhere they just can’t find it yet. Do you know in general how long it takes to show up and what the next steps will be. Also does this mean that I won’t achieve NED/remission again. This was also something she hinted at.

    thanks in advance xx

  • SuedSued Posts: 3

    Hi, I don't know if anyone can answer this question, but I was diagnosed with AML (acute myeloid leukaemia) in October and have had 5 rounds of chemotherapy and three of Midostaurin. 6 weeks ago I finished the IV chemo treatments and am now on maintenance Midostaurin for 12 months. I also had a stroke at the beginning affecting my face and left arm (this is improving although I don't yet have full use of my hand). My query is, will I ever feel 'normal' and like me again? Will I ever be able to get back to feeling well enough to have my old life back. Is it early days and am I expecting too much too soon? I am 59 years old and don't work. I spend most days sitting in the same seat watching TV and feeling depressed and mourning losing my old life. I'm not feeling sorry for myself, I just can't get enough motivation to do anything useful. And advice would be appreciated.

  • KarinSiegerKarinSieger Posts: 98 Emotional Wellbeing Advisor

    Hello @Sued

    Thanks for writing in. As your question relates to our emotional and mental wellbeing I will respond.

    I am sorry to hear about your cancer diagnosis and also the stroke. You certainly have had quite an unsettling time. And the question you ask about feeling 'normal' and our 'old life' is something that most people affected by cancer or other life-changing illnesses (incl a stroke) feel strongly about.

    It is a process. Like our body recovering from treatment, with side effect sometimes lingering for a short / long / permanent time, so our mental and emotional wellbeing needs to recover. We can experience a lot of mood swings and difficult emotions like fear, loss, anger, hopelessness, depression, which can make it difficult to believe that we will ever get back to the way we felt before the diagnosis.

    I always advice that learning to live with what has happened is better than hoping and waiting for it to go away, and that we will continue where we left off.

    Illness and treatment can make us feel disempowered, that we lack control of our lives, that we have become vulnerable, are not invincible, and ultimately all that can lead to a loss of self confidence.

    The fact that you are reaching out for advice shows that you are ready to take charge (it might not feel like that). That you want change. But the direction of the change can never be backwards, it can only be forward.

    What do you want to do with your life now?

    You have remained the same - your beliefs and values, your strengths, your character.

    In time (and sometimes with what feels like baby steps) we will start to figure it all out and regain our confidence and perspective. And it does take time to recover from the mental and physical shock of a diagnosis and the treatment. Even the physical side of things is a constant reminder of how much things have changed. If you have chemo brain (not everyone gets it) than this can also cloud the way in which we experience and live our lives. More on this HERE

    We may look the same on the outside, but on the inside (the bit no-one else sees and few understand) things have changed. You will find the 'old you' but in a changed world.

    In summary, give it time to process all the emotions that will have built up. Try and add a bit of change to your daily routine, even if it is just a few minutes here and there. Try and reach back to some of the things you may have enjoyed. Do it gingerly. Don't be disheartened if it no longer feels the same.

    The restrictions on us due to the corona crisis and all the worries this brings, does not make it for an easy time, and can add an additional sense of anxiety, depression and hopelessness.

    I hope I hope been able to assist you.

    🔖 You might be interested in my a couple of posts I have written on this topic 🔖

    Why it is more helpful to think of a 'cancer journey' as a 'life journey'

    The mental and emotional impact of cancer - what to expect

    One minute you are ok, the next helpless and frail

    https://karinsieger.com/how-cope-with-life-cancer-treatment/

    🎧 You can also listen to an interview I gave to with Breast Cancer Now about my own experience of going through cancer and gradually finding my way back to me. Listen to it HERE 🎧

    With best wishes.

    Karin 🌱

    Karin Sieger
    Psychotherapist | Cancer Counsellor  | Reg. MBACP (Accred)

  • SuedSued Posts: 3

    Dear Karin, Thank you for your reply. I will take a look at your recommendations. I think the lockdown is making things much harder, not being able to meet friends etc. is very hard. I know I've got to do something about getting myself back up again, I just want to sleep to pass time but then I know I'm just sleeping away my life. Best wishes, Sue x

  • KarinSiegerKarinSieger Posts: 98 Emotional Wellbeing Advisor

    Hi @Sued

    I am glad you found it useful. The lockdown makes the situation definitely more challenging, because it also slows everything down, and changes our sense of time.

    Best wishes for you.

    Karin 🌱

    Karin Sieger
    Psychotherapist | Cancer Counsellor  | Reg. MBACP (Accred)

  • RobertARobertA Posts: 1,173 Community Admin

    @Sued

    Hi Sue

    Wow, you have been through so much that it is not surprising that you are feeling the way you do. It would be bad enough without the Corona virus which has added a new challenge.

    I cannot add much to what @KarinSieger has said, but as someone who has struggled with depression and anxiety following cancer treatments I would like to add my thoughts. I was really struggling to cope with the ‘new me’ which wasn’t who I wanted to be. Luckily, I found MacMillan Cancer Support who provided me with lots of love and a counsellor who helped me to find my way through the fog. Eventually, I did that, and I also found this community of lovely people where I have made many good friends. I am so pleased you are here with us because you can say anything you like and we will listen and understand. We also have the ‘Cancer Coffee Break’ where we chat about our animals, hobbies etc. In fact anything but cancer.

    It took some time, but in many ways, my life is more fulfilling than it was before cancer and I feel sure that you will find you way through too.

    I do hope that you will keep in touch.

    Rob x

  • LizzyB73LizzyB73 Posts: 111 Oncology Specialist Nurse

    Hi Liz, I was diagnosed with ovarian cancer stage 3c in March 2018. I have had a radical hysterectomy and total debulking, I had my last chemo in Dec 2018. My CA125 went from 9000 to 19. However over the last 4 months it risen steadily and is now 127. My consultant called and said that the CT scan I had a few weeks ago didn’t show anything. However she did say that this usually means that the cancer is back and growing somewhere they just can’t find it yet. Do you know in general how long it takes to show up and what the next steps will be. Also does this mean that I won’t achieve NED/remission again. This was also something she hinted at.

    Hi @Tay100

    Thank you for getting in touch and I can totally understand how concerned you must be at this time.

    Are there plans for you to have further imaging done - a PET scan for example could be potentially useful?

    Also have you been tested for the BRCA gene in the past at all?

    Treatment for recurrent ovarian cancer would usually begin when there is some evidence that the cancer has come back and usually alongside confirmation from a CT scan. As you say your recent CT is clear so possibly they may just want to keep an eye on this and repeat it in a few months to detect any growth in the tumour coupled with any symptoms you may be experiencing. This would then be a time for more treatment to take place for you.

    Research has shown that starting more chemotherapy when a woman`s CA125 starts rising but before there any symptoms does not have any affect on the success of treatment.

    Your oncologist and clinical nurse specialist at the hospital will be best placed to discuss further treatment options for you but this would usually either be further chemotherapy or one of the more targeted therapies.

    I wish you all the very best at this time

    My best wishes


    LIz 💕

    Liz Bradley
    Oncology Specialist Nurse | Oncology Service Manager @ Springfield Hospital
  • Tay100Tay100 Posts: 3

    Hi there, thanks so much for your reply, it’s helped a lot. I’ve been tested and I’m not brac positive. No ones mentioned a PETscan I’m not sure what it is either. she is arranging for me to have another scan and blood test in 5 weeks time but need to see where will do it as my local hospital isn’t now, which is quite understandable.

    Its good to know that it’s okay to wait before starting treatment, I was a little concerned about that. Not that I want any more chemo especially at the moment with this terrible virus.

    Take care of yourself xx

  • LizzyB73LizzyB73 Posts: 111 Oncology Specialist Nurse

    Hi @Tay100

    I have attached a link below which gives an idea of what a PET scan is.


    I wish you well for your next scan and blood test. Please keep in touch if you need anything more

    Best wishes


    Liz 💕

    Liz Bradley
    Oncology Specialist Nurse | Oncology Service Manager @ Springfield Hospital
  • Tay100Tay100 Posts: 3

    Thank you so much! xx

  • JulieM86JulieM86 Posts: 9

    Hi Liz. I hope you’re well.

    Sorry for bothering you with this but I’m having difficulties getting through to my breast care nurses at the moment which is understandable so hope you don’t mind me asking you for some advice?

    I had a lumpectomy in Dec 2019, started chemo Jan 2020 and finished chemo two weeks ago. Radiotherapy has been delayed due to coves-19.

    I am experiencing the same pain in the treated breast which I was feeling before I was diagnosed with breast cancer in Nov 2019 and am worried that the cancer could have started to grow back? Do you know of this is possible? Or is it quite normal to experience these pains months later, due to the scaring? The pain itself is exactly where the cancerous lump was - in the milk duct...I had 2 lymph nodes removed which were both healthy but I can see the vein from the milk duct to the lymph notes through the skin.

    The scars don’t hurt but the scarred tissue is numb so I don’t think the pain I am getting is connected?

    I know I am coming across as paranoid but I am worrying quite a lot about this, I’m 33 and have a family history of cancer and the consultant said at the beginning that my cancer is stimulated by my hormones ... I am due to start taking Tamoxifen on 23rd April, daily for 5 years.

    Thank you,

    Julie

  • LizzyB73LizzyB73 Posts: 111 Oncology Specialist Nurse

    Hi @JulieM86

    Thanks for getting in touch with what is something that is understandably concerning for you. I hope firstly you are feeling okay after going through chemo. You didn’t say which regime you had but hopefully it was tolerable for you.

    Of course without me knowing exactly all your clinical details I won’t be able to give you a completely definitive answer but in my experience of treating ladies with breast cancer, there can still be pain after treatment ends and unless you had a very aggressive tumour, which judging by the fact that you said your lymph nodes were clear, is probably not the case then I would be fairly hopeful that the pain you are experiencing is not the cancer growing.

    It must be frustrating that your radiotherapy treatment has been delayed due to covid19 but hopefully things will get back to some kind of normal soon.

    I wish you well and come back to me if you need anything

    best wishes

    Liz 😍

    Liz Bradley
    Oncology Specialist Nurse | Oncology Service Manager @ Springfield Hospital
  • ChlogambleChlogamble Posts: 6

    Hi Lizzy,

    I just wanted to ask your opinion on positive lymph nodes and treatment please.

    I’m 34 with grade 2 invasive ductal breast cancer and have just started chemo. I’ve had a lumpectomy and sentinel node removal where 1 lymph node was positive whereas the other one is clear. My BCN said it was only small but oncologist letter said there is a risk of microscopic spread.

    I have been reassured that 1 node is apparently ‘ok’ and chemo and radiotherapy should mop things up but I can’t help but worry that microscopic cells could be in other nodes. How sure can I be that chemo and radio will kill everything?

    I have another surgery to remove some DCIS, should I be pushing to ask them to check another node after chemo?

    thanks so much for your help

    Chloe

  • skajj015skajj015 Posts: 2

    My name is Kaye Cerri, I was diagnosed with Stage 111A lung cancer in March 2017. I had surgery on April 6, 2017 at Weill Cornel hospital. I went under treatments, Now I'm on maintenance. My oncologist put it on hod due to the corona virus. I'm a little nervous because I haven't had any treTMENTS SINCe March 10, 2020.


    Kaye Cerri

  • LizzyB73LizzyB73 Posts: 111 Oncology Specialist Nurse

    @Chlogamble

    Hi Chloe

    Thanks for getting in touch and I hope I can try and help you, with the clinical information you have given.

    You say that you have just started chemotherapy and that you had one positive node. It was great that the other node came back as negative that was removed. This indicates as your breast care nurse said that the spread has stopped at one node. Stage 2 breast cancer means that the tumour in the actual breast was also relatively small which again is good news.

    You didn’t mention which chemotherapy regime you were having or if your tumour was hormone sensitive but the fact that you have had a lumpectomy to clear the tumour in the breast means that the chemo and associated radiotherapy will do it’s job of getting rid of the positive node and any potential microscopic spread.

    I would suggest that it is not needed to request any further lymph node removal and sampling . Unnecessary surgery to the armpit area to remove nodes that chances are will be negative can cause more risk of lymphoedema, an uncomfortable condition where there is arm swelling and tightness.

    Please do get in touch again if you need me to support any further to help clarify things for you.

    I really do wish you all the best with your chemotherapy and stay well at this difficult time .


    best wishes


    Liz 💕

    Liz Bradley
    Oncology Specialist Nurse | Oncology Service Manager @ Springfield Hospital
  • LizzyB73LizzyB73 Posts: 111 Oncology Specialist Nurse

    @skajj015

    Hi Kaye

    Thank you for getting in touch and I can understand how concerning this may well be for you. You didn’t say exactly what maintenance treatment you are having but I am guessing that it may be immunotherapy treatment?

    Oncologists are having to make some tough decisions as to what treatments are to continue and which ones are to be delayed but if you are concerned as to why yours has been delayed then it would be best to have a chat with the medical team caring for you so they can explain their reason.

    I would suggest that the feeling is that the risk of having treatment and possibly contracting covid19 possibly outweighs the benefit of having it at this time but for your peace of mind it would be good to have that confirmed.

    For reassurance, we have delayed some of our patients who are on maintenance treatment and the feeling is the disease is stable enough to cope with a delay at this time.

    Sending my best wishes


    Liz 💕

    Liz Bradley
    Oncology Specialist Nurse | Oncology Service Manager @ Springfield Hospital
  • skajj015skajj015 Posts: 2

    I was on Keytruda, but my oncologist took me off it. Right now I'm only on Alimta, that treatment only takes 15 minutes, and steroids. I'm feeling good, I take my temperature, blood pressure and also my oxen and all is good. I'm not coughing or getting shortness of breath. I'm just getting paranoid. My oncologist said it is on hold at this time, until May.

  • LizzyB73LizzyB73 Posts: 111 Oncology Specialist Nurse

    @skajj015

    Hi

    Alimta is also very effective maintenance treatment and as Keytruda is immunotherapy there is more potential for you to be susceptible to covid19.

    I am so glad though that you are feeling well and please keep safe

    Liz 💕

    Liz Bradley
    Oncology Specialist Nurse | Oncology Service Manager @ Springfield Hospital
  • DathiDathi Posts: 2

    Hi Liz I am undergoing chemo (folfox) at the moment have had 4 treatments having my 5th today I have not experienced side effects other than a bit of fatigue and tingling in my fingers but after the last treatment I developed bursitis in my left elbow which is extremely sore I was put on a course of steroids for 3 days which had little or no effect (I am allergic to any non steroidal anti inflammatories) I have been icing and heating hot water and Epsom salts which gives me some relief and reduces the swelling but it keeps coming back is there anything I can take or do to eradicate it

    Best regards Dathi

  • AnnetteAAnnetteA Posts: 1

    Hi I had chemotherapy and radiotherapy back in 2018/2019 my last chemo being end of 2018. I still get a very sore nose inside both sides. Sounds awful but it scabs up and is really crusty and thick. Will this still be a result of the chemo after all this time? I cannot get it to heal up.

  • LizzyB73LizzyB73 Posts: 111 Oncology Specialist Nurse

    @Dathi

    Hi Dathi

    Thanks for getting in touch. Joint pains such as you have described are not something I have come across with patients on Folfox , are you having any injections to boost your white cells at present?

    if so, this would be a possible cause of joint pain in your elbow

    Can I suggest that if the remedies you are trying have not worked , that you discuss this with your chemo team who will be able to offer an alternative treatment plan for this?

    I so hope it settles soon for you

    best wishes

    Liz 💕

    Liz Bradley
    Oncology Specialist Nurse | Oncology Service Manager @ Springfield Hospital
  • LizzyB73LizzyB73 Posts: 111 Oncology Specialist Nurse

    @AnnetteA

    Hi

    Thanks for getting in touch. Without knowing for which cancer and what type of chemo treatment you had for back in 2018, it would be difficult for me to know if it could be related.

    If you let me know, I can come back to you with a more supportive answer

    my best wishes

    Liz 💕

    Liz Bradley
    Oncology Specialist Nurse | Oncology Service Manager @ Springfield Hospital
  • riehrieh Posts: 9

    Hi Liz, I was diagnosed with a stage 4 TNBC (no spread to major organs), I've had chemo and recently a mastectomy with axillary node clearance. The pathology results I am told stated: they removed a 9cm tumour showing a 60% response to chemo and it was a grade III, 12 lymph nodes were removed from the axilla. Are you able to provide any clarity on what this actually means please as even after the Dr tried to explain I didn't really understand whether this was good news or not? Thanks

  • DebsDebs Posts: 4

    Hi

    I was diagnosed with stage 2 Breast cancer (invasive lobular carcinoma) in June 2018. I had a lumpectomy, ANC, radiotherapy and am now on letrazole. All seemed to be going well but recently I have developed a lot of joint ache all over but particularly in my hip and foot. My cancer nurse has taken me off letrazole and things have improved slightly in my knees and ankles but the pain in my foot is just as bad. It’s accompanied by numbness. There is also pain in my buttock. The foot and buttock pain was already there before cancer but it’s much worse now. Does anyone else have this? It feels like sciatica but is there a link with breast cancer or cancer treatment? Thank you 😊

  • LizzyB73LizzyB73 Posts: 111 Oncology Specialist Nurse

    Hi @rieh

    Thank you for getting in touch. I hope you are feeling okay after your surgery and recovering well.

    I am so sorry but I am not able to offer answers to such a specific question without being in full knowledge of all the clinical information about your breast cancer.

    However, can I advise that you give your breast care nurse a call at the hospital you’re being treated at as they will be able to explain the diagnosis in more detail for you. One of the worst things is being left with unanswered questions or lack of clarity as to what this all means for you.

    I can say that it sounds like the chemotherapy did do it’s job as 60% response is a good thing.

    It would be useful to ask how many lymph nodes were affected and then what the plan is for further treatment that you may well need.

    Please let me know how you get on and I will try and support you further.

    Best wishes

    Liz 💕

    Liz Bradley
    Oncology Specialist Nurse | Oncology Service Manager @ Springfield Hospital
  • LizzyB73LizzyB73 Posts: 111 Oncology Specialist Nurse

    Hi @Debs

    Thanks for getting in touch.

    It would be worth making sure you are not deficient in any vitamins particularly b12 and D as lack of these can cause joint pain and numbness.

    If the pain was there prior to your diagnosis I would suggest it’s not related but it would be something I would advise you get checked out so you can get some answers and possible treatment for it.

    best wishes


    Liz 💕

    Liz Bradley
    Oncology Specialist Nurse | Oncology Service Manager @ Springfield Hospital
  • womanwith3dogs1catwomanwith3dogs1cat Posts: 1

    Diagnosed 3C ovarian end September 2019. Had full hysterectomy, bilateral salpingo oophorectomy blah blah in October. Then 4 chemo. Then omentectomy in February 2020. Chemo saw my CA125 come down to single digits. After the second op I declined more chemo. CA had risen to mid teens. I did well on chemo according to oncologist and only lost hair and had some fatigue and a bit of neuropathy but I've seen other women further along the chemo route and I don't want any more.

    So I know it'll get me sooner or later. Oh, I now have a colostomy. I'm managing that pretty well. It's way better than the ileostomy I had after the first op!!! Any tips on just keeping well for as long as possible as there's no way I'm going back into hospital for scans or blood tests (my veins totally collapsed and I'm needle-phobic now - never was before) or anything else. But what can I expect? My bladder is annoying me. It feels like it did before I was diagnosed but I don't have a recurrence (yet) of the dreaded ascites. I have been drinking gallons and I'm going to cut down a bit. Happy to take most kinds of meds and ask for them from GP.

    Thanks! What awaits me? And how do I mitigate the worst of it?

  • janieheejaniehee Posts: 1
    edited May 24

    Hello.

    I was diagnosed with very early, or stage 0 breast cancer back in March. It was a 4cm mass of high grade DCIS (oestrogen responsive). I had a mastectomy and sentinel node biopsy 2 weeks ago. The patholgoy report confirms the DCIS diagnosis but has also found one out of three of the lymph nodes has been affected by a micromet of invasive cells. They are now testing that for HER2 receptors. They said if it's positive then I'll be looking at chemo. However I'm worried that if it's negative they are just going to leave it and hope the tamoxifen gets rid of it. I'm wondering if they should be looking at either radiotherapy or more lymph node removal? I'm concerned as my mum had a DCIS diagnosis followed by a mastectomy and 7 years later she died after it had spread despite them saying it wasn't likely. Oh and I'm 44 years old with small children so I want to do everything I can to reduce reoccurrence chances.

  • Malcolm_1954Malcolm_1954 Posts: 2

    Hi Liz,

    I am a 66 year old male residing in South Africa. I was diagnosed with bladder cancer two years ago. After initial chemo treatment, my then oncologist and urologist recommended I have my bladder and prostrate removed. I did not favour this idea and consulted a Professor of Oncology in Richards Bay South Africa, Professor Jordaan, Hi advice was not to undergo surgery. After consultation with Prof Jordaan, I underwent more intensive chemo and radiation treatment. I was declared cancer free about a year ago. My problem is the my chest / pectoral muscles have sagged somewhat and look a bit like women's small breast. My nipples are also sore to the touch, similar to when a young man starts going through puberty. Is this normal? Is there anything I can do about it?

    Regards,

    Malcolm_1954

Sign In or Register to comment.