Feeling alone.

Also the lymph nodes have been infected in left side. Shoulder blade and under arm and left arm affected. Difficult to use arm now. Under arm swollen and sore. Told oncologist over phone and he said take more pain killers. After 2 core biopsies it was 4 weeks before I saw oncologist and given any sort of treatment. Letrozol. He said in few months after lock down he will see me. Its all new to me so it's good to tell someone. I hope I can get support from joining this group as things seem very dark.

[Beryl71]

I am really sorry to hear that. From initial xraY through all investigations to getting an oncologist phone call took about a month, but I was put on letrozol and palbociclin. Almost immediately there was an improvement and the lymph node swellings on my chest have gone down. Also my hip and back pain have improved and I'm hardly taking any pain relief. So you need to push to get on the full treatment. You should see a difference. You're not alone! I got all my news during lockdown and all I wanted was a hug! I felt very alone. But not any more, my friends have been great and this group is a godsend.

[Hidden in reply to Beryl71]

This is such a good group. I feel there is some hope. It has been months and no contact with them apart from April when I had a phone appointment. That's when he said they will see me after lock down. Thank you so much. Xx

[mariootsi]

The support here is amazing! It is getting me through this mbc!

[Eliactida1955]

I guess I heard your onc is not seeing you-why? My appt s are the same and I see him in person but because nothing is going on he wants to see me every three months. I think because of all you are going through he needs to see you-call back and hang in there!!you shouldn’t have to suffer.🙏🌹

[Hidden in reply to Eliactida1955]

They won't see anyone at the moment and have tried to ring nurse but they are all busy I know. I think.. Well I don't know what to think really. I can't insist they see me. I am on letrozole and that's going to be all there is at the moment. Thank you it helps to know you care.

[Eliactida1955 in reply to Hidden]

I see that you are in the U.K. So I don’t know how it works up there. I would feel better if you were on Ibrance too and yes letrozole works but if you need to be seen then perhaps another dr-onc because I would have a hard time going back to someone who doesn’t make the time. Dr should always be available if not then there are others. I was diagnosed in sept 2018 and started letrozole in nov and Ibrance nov 15 th-within 4 months the cancer has stabilized and tumors are gone even lesion on my femur and left lymph node has calcified. My pet scans are stable nothing is lighting up. Please try them or someone else. Pain is not to be-they must help. I wish the best for you- keep at it-stay strong🙏🌹

[8576]

So very sorry you are having difficulties but glad you have found this site. Don't know if this will help. We are not all in the same country so services vary.

Can you speak to your regular physician? Maybe he can help you through this. Or if it feels intolerable then can you insist on seeing your oncologist? I was always told they are always there for me and not to hesitate to call.

I hope the swelling goes down and you feel better soon. Is it possible to get some in home help until your arm improves? Don't know your situation but I would think rest would be one strategy.

Keep us posted.

Cheers, June S.

[Hidden in reply to 8576]

Thank you. The swelling hasn't gone down and it is getting more difficult to use my left arm. I think they are all so busy and I understand that but I cannot contact them the only way would be is to phone the G. P. I will try to get a phone appointment but that is something very hard. I live in the U. K. So maybe things are done differently here. Thank you for replying it means a lot.

[Beryl71 in reply to Hidden]

I had scans and biopsy and the prescription during lockdown. Our oncology centre has now been moved to the private hospital to be away from all the covid cases and they are starting some face to face appointments. Its not for you to have to worry about them being busy, you need prompt trestment. Do try to find someone to suppprt you and go with you to get something happening. Have you thought of phoning Macmillan ? They're pretty good as have access to gps and hospital consultants. I have access to a key worker during office hours but I've also got a 24hr number for the local hospice. Good luck.

[8576 in reply to Hidden]

I find that appalling that you have been treated so badly. Get a hobby? Really? That borders on being abusive. Do you have a patient advocate where you can place a complaint? Also if you have family or friends who can help you through this and find solutions.

I hope your GP can help or at least get you some help so you can rest your arm. Also, is it possible you can switch to another Oncologist? Start that process right away. Ask for a referral from your GP.

Can your NHS help.

Good luck, I do hope you find some help. No one should be left hanging in pain.

All the best.

Cheers, June S.

[Hidden]

Hi,

I'm so sorry to hear of how much you are suffering and that you have a long wait until you see your oncologist. I find that unacceptable. When I was diagnosed I was given a number to reach the oncology nurse specialists for general questions and issues, but also an emergency number if something serious came up. Do you have an emergency number you can call? If so, I would give the oncology nurses a ring and explain what is going on. You might be able to see your oncologist more quickly. With lockdown easing this Saturday that should hopefully make a difference to cancer services for us in the NHS. All of my treatments, CT scans, and consultations with my oncologist have carried on as normal (apart from switching to a video conference consultation earlier this month).

I hope you start to feel better soon.

Sophie

[Hidden in reply to Hidden]

They gave me a number for a nurse and I did call about the pain but she said she had many ladies in the same situation and suggested I get a hobby. I will not call again. I had 2 core biopsies in December and had my appointment 4 weeks later to see oncologist. I had a phone appointment in April and told him about the pain. I have heard nothing since. Thank you for listening. X

[Hidden in reply to Hidden]

Hi,

You were treated very badly by the oncology nurse and also by your oncologist. It is completely unacceptable to tell you to get a hobby when you are calling about pain! I have found that persistence is the key to getting heard. Sometimes it takes a few phone calls before something happens. Do you have a friend or family member who can also advocate for you? Lockdown is no excuse to be refusing to see you and treat you.

Sophie

[Hidden in reply to Hidden]

Yes I have a son who lives not far away and he is very supportive and also a grandson who cares so much. My grandson has 3 small children. They help a lot. I am very old so perhaps that's why the oncologist can't do much. I live alone since my husband died. He had multiple myeloma. The last 3 years of his life was so painful. He was a ex royal marine and tried so hard to keep going. I looked after him and miss him so.

[Hidden in reply to Hidden]

I'm glad you have loving family support that you can rely on. That can make such a difference. I'm sorry to hear about your husband. That must have been so hard for you. I still feel that you have been treated unfairly by your oncologist. Age should not bar you from receiving the best possible care.

I was 39 when I was diagnosed just over two years ago, and I felt that my age was against me too, but for different reasons. I was young and healthy (or so I thought) when I first went to see my GP. My GP even suggested that it had not spread and was early stage. She also dismissed me when I complained of back pain, which turned out to be the result of two small metastases in my thoracic and lumbar spine. This was before I had a mammogram, ultrasound, CT scans, PET CT scan and MRIs. I remember going through my family history with them, along with my lifestyle, and I didn't tick any boxes that seem to predispose some women to breast cancer. All I could think of was that I may have developed it after being on hormonal birth control for nearly 16 years. My point is that we should not let our doctors trivialise anything we have to say, but we should do all we can to get the best care. That is a lesson I have learned since this all began.

Sophie

[Teddielottie]

Sorry your treatment has been affected during lockdown ! If you are in pain you should either ring your GP for advice or the oncology nurses. How long ago was it that you told your onc about your pain ? Many ladies on here are on Letrozole and hopefully that will be helping , but you shouldn’t be left in pain . Lockdown has started to ease and more people are now going back to their hospitals for treatment , but at the same time there will be those newly diagnosed during lockdown , so they are extremely busy . But do contact them again and let them know about your pain . Take care x

[Hidden in reply to Teddielottie]

I had a phone consultation in April and I told him then about the pain. I have heard nothing else from them at all. Thank you so much for replying. Xx

[Teddielottie in reply to Hidden]

I would definitely contact them again ...is there a family member or friend who could ring , or at the very least make a virtual appointment with your GP and ask the GP for advice/ help with dealing with the pain. I am in the U.K. (in Yorkshire) and my treatment ( I am on Ibrance / Letrozole ) has continued during lockdown . I wish you well .x

[SeattleMom]

Cannot believe your treatment by this oncologist! Once you got results from your biopsies (should take less than a day!) you should have been set up with oncologist IMMEDIATELY!

Do you know if your cancer is hormone receptive? If so, the med called Ibrance (in tablet form) should be taken with your Letrozole.

Is there a family member or friend who can advocate for you? Either you or someone close should be RAISING A VOICE. Don’t sit still for these delays!

God bless you! You are in my prayers!!

Linda

🙏🏻🙏🏻💗💗

[Hidden in reply to SeattleMom]

Thank you so much. Yes he put me on letrozole and just said I would be on it for life. I do have atrial fib and am old so perhaps I can't expect any more. Thank you so much it is such a comfort to speak to someone who understands.

[SeattleMom in reply to Hidden]

Dearest one!

I bet I’m older than you and I absolutely would not stand for this type of treatment.

I would write down ever grievance from all of the interchange with your supporters here. I’d be happy to help you with a list. Find how who’s in charge of the Cancer Center and/or hospital and share this absolutely shameful treatment !

I care and I’m happy to help you! YOU ARE NOT ALONE!!

Linda

🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻💗💗💗💗💗

[Staysha]

I feel like something isn’t right with your oncologist. I haven’t missed an appointment during this pandemic. I feel like you need to be seen. Please call and insist on seeing him/her.

Wishing you the best in dealing with this situation. I know none of us need any unnecessary stress in our lives.

Hugs to you,

Stacy.

[Hidden in reply to Staysha]

I can't get in touch with him because of the lock down and there is no way to do it. I do appreciate you answering me. I went to the G. P. and had 2 core biopsies in December but didn't get a appointment to see the oncologist until 4 weeks later. They said it was Christmas holiday. He put me on letrozole and gave me a appointment for April 10th. Because of lock down it was phone appointment. He just said are the tumours still growing.? I said no. He said we will see you after lock down I said I was in pain and take extra pain killers. Thank you for caring.

[Barbteeth in reply to Hidden]

This isn’t right...you’re not getting any support

I have my oncologists mobile number and I can text her if I’m worried about something...she told me I can do this and she doesn’t mind...I’ve done this on a few occasions and she rings me back the same day

If you can’t get any answers via telephone can’t you email or even send a letter the old fashioned way and express your concern

Send it to the oncologist as he/she may not be aware that you’re trying to contact....I would be furious if it was me ...it’s bad for your mental well being as well as the physical stuff

Barb xx

[Red71]

I missed your first post, so welcome! I am also disturbed by your oncologist saying he would see you after lockdown. I have not missed an appointment, a scan, or treatment during this period. I’m not sure what country you are in, but can you change to another oncologist? Meanwhile you should call your gp about your infection and get it treated immediately if it is not being treated.

You need to get a definite appointment, soon, or be asking why not. The lockdown is not an excuse for poor or delayed care.

Good luck. We will be here for you. Hugs, Elaine

[Hidden in reply to Red71]

I live in the U. K. I cannot contact the oncologist. I tried to ring the nurse and she got back to me after 2 days. She said she has many ladies in the same situation. She said I should get a hobby. So I won't ring again. Thank you for your support.

[Julie2233 in reply to Hidden]

Make sure you ring again! Get a hobby?! That’s appalling. Your oncologists other patients are nothing to do with your situation, you need his/her attention, you are in pain! I’m afraid you have to be pushy sometimes to get treatment. This is your life and it’s important. If you get fobbed off again ask for them to send you details of the hospitals complaints procedure and PALs, that normally gets their attention.

Your gp may be able to help with pain.

You can also get the name and contact details of your oncologist’s secretary by ringing the hospital reception and keep ringing until you get through to her. Or If you have a local breast cancer charity, like the haven, they may be able to help you get access.

You are going to be seeing your oncologist for years to come and you need to be able to trust him/her which means being able to get appointments and getting questions answered. If you can’t trust him/her you have to find another.

[Barbteeth in reply to Hidden]

Where in the uk are you?

I’m in Nottingham and I’ve had all my treatments as normal before lockdown...only twice I’ve had a telephone consultation...I’ve had a ct scan as well during this time

It may well be just that particular hospital/oncologist that’s behaving in this way...I think you should demand to be seen ...the lockdown could go on for longer especially as people are being stupid and the pubs opening etc!!!... sorry to sound pessimistic but there’s nothing worse than feeling lonely

Chin up

Barb xx

[Mindysooty]

Oh bless you, its scary enough when youre first dx, without being in lockdown. Welcome to the group, I hope you find the information and support you need on here. great bunch of very informed ladies who know exactly what youre going through. Best wishes. Josie x

[Hidden in reply to Mindysooty]

Thank you so much it is so good to know someone understands.

[Julie2233]

Hello and welcome 😊 and sorry you have had to join us. It is a lonely time when you are first diagnosed and trying to find your feet again and even worse at the moment with all the restrictions.

Finding this group made me feel that I did have a future and for me that was an enormous help. Lots of inspirational ladies who have gone through what you are going now and can say hold in there it gets better.

Lots of the ladies on here have had good results from letrozol and hopefully the pain will diminish as you get established on the treatment. As others have said, ibrance is often prescribed with letrazol to extend its working time, and it’s worth asking your oncologist about it.

Also, it might be worth asking about physio for your shoulder pain. Most are doing telephone appts but as the lock down eases they should soon be seeing people again.

[Hidden]

Thank you so much for your kind words and support. I did feel it was the end very soon but reading others are in the similar situation and are fighting to carry on has given me hope. Xx

[Sunnydrinking]

Hi

Welcome to this very helpful forum and I’m pleased you’ve already had so many helpful replies.

Whatever your age, or medical condition, you certainly should not be left in such pain. If I was you, I would contact PALS, they are not just there for complaints etc but can assist with communication with key people within different Hospital departments etc and getting things moving.

To be told to get a hobby is not on and I imagine after nursing your husband you deserve a rest if anything.....

Shoulder pain if not good and when you are in pain facing anything is so much more difficult.

I hope you get some resolution soon.

Take care

Jo x

[RLN-overcomer]

I am so sorry you have been treated so badly by the very people who are suppose to help you. The Hippocratic Oath says do no harm. This oncologist is obviously afraid, as we all are, but this is the profession he/she signed up for. I give so much respect to the amazing Dr's , Nurses, and medical staff who go to work everyday, and every night to relieve patients pain, and save lives, especially during this unprecedented time of fighting the most deadly virus that has killed so many world wide. Your Oncologist would not get this same respect. See if you can change Dr.'s. You, or a Patient Care Advocate/Social Worker is needed to help you. How dare this nurse tell you to get a hobby. A hobby won't stop the unbearable pain you are dealing with. That nurse wouldn't dare speak to someone in her life she loves like that. Nor would she have said that if you had an advocate/loved one with you. I hope you can make a complaint, and speak with the Hospital Administrator/Director. I do pray GOD will make a way for you, and give you pain free healing/restoration. I send you safe hugs in place of real hugs from at least 6-10 feet away.

[Hidden]

Infections shouldn’t be ignored at all. Unfortunately it’s hard to insist on anything at the moment as the medical profession here in the UK are having so many changes. Would they not send out a District Nurse? Take more pain killers is always an easy answer from them. I was misdiagnosed 18 months ago with something totally different to Stage4 Breast Cancer. Even though I’d had breast cancer 5years previous. I was told it’s inflammation of the rib cage take more pain killers. I suffered that for 9months until I was correctly diagnosed. Your problem should not be ignored. It’s hard to concentrate on anything soon after diagnosis. Once you progress positively, and we know you will, it will be easy for you to take up new interests. I really hope us ladies on here can help reassure you. They are wonderful. Take care

Cheryl

[Hidden]

I share your sense of helplessness. Cancer during COVID is the worst, especially navigating when offices and hospitals are trying to diagnose remotely. I just joined this board and am hoping to get information and some advice in coping. This is my 3rd bout with cancer and by far the most challenging mentally.