23 waiting for full breast cancer diagnosis during Covid-19
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1 posts since
28 Mar 2020
Hi all
I was wondering what other people’s experiences during the breast cancer diagnosis process were like and how they coped during that time – especially anyone going through it all at the moment with the added stress of the Covid-19 pandemic, and anyone around my age (I am 23).
(Sorry for such a long post below! Didn’t realise how much I wrote. But reading other posts and replies on here has really helped me feel less alone at the moment so I thought I’d try posting. Thanks in advance to anyone who bothers to read it/replies.)
For background – I went to the GP after noticing soreness/hardness in my left breast then finding a small lump in my underarm, the GP urgently referred me to the breast clinic particularly as I have family history. At the clinic last week initially the consultant I saw seemed very dismissive but because of the lump in my underarm I was sent for an ultrasound/biopsy. I ended up having 6x biopsies and a mammogram too. I was sent back to see the consultant after the tests and he bascially said he was pretty certain it’s breast cancer, and it’s in at least the one lymph node in my underarm too.
He said they need the biopsy results to be sure but thought the chance it wasn’t cancer was “very very small”, and that I’d need to have a CT scan and skeletal survey the following week to see if it has spread. I’ve had those scans.
It felt very much like I was being told I have it, not like it was a maybe, but I feel confused and in a strange limbo where I don’t know if I’m actually formally diagnosed yet, or anything about grade/stage, treatment etc.
The consultant said normally they might think about chemotherapy before surgery but because of Covid-19 they aren’t doing this at the moment so it would likely be surgery first, and also that I would need a full mastectomy, where normally I might be able to have reconstruction at the same time but because of coronavirus the NHS isn’t doing any reconstruction at the moment. Then probably chemotherapy after surgery.
The consultant let me have some time to sit and take it all in and then go back and ask him a few more questions, but I didn’t really know what to ask at the time and he didn’t really suggest anything. I have done loads of reading online since and now I have so much I want to know/ask about – e.g. fertility, surgery, how this will all work in amongst the Covid-19 lockdown, etc.
But also doing research and trying to think about questions to ask all feels pointless when for all I know it could have spread and be incurable, and I don’t really know what the treatment plan will be yet. I don’t know what I want to ask until I know how bad it is. I didn’t speak to a breast cancer nurse, he gave me a card with contact details but like I said I don’t know what to ask.
I’m hopefully seeing the consultant next week for results and will find out things like grade/stage, and what treatment I am going to have.
Does anyone have any advice for how to cope in the meantime, when I have no idea how bad this is or what’s going to happen to me, and suggestions of things that I might want to ask about when I see the consultant again? I feel like I’ve been told this then left without any support. I can’t see family etc because of the lockdown.
I’m also struggling with the thought of likely having a mastectomy, without reconstruction being an option. Even though I would want to do whatever gives me the best chances of beating this, it feels scary that the Covid-19 pandemic means I don’t get the option. I wish he hadn’t told me that it was usually an option. Is anyone else in the same position?
5050 posts since
15 Jul 2010
Hi Alb20,
Welcome to our forum. This is always a scary time, but it is even more scary at the moment with the COVID19 pandemic.
I have had 2 bouts of breast cancer in the past 10 years and, know how frightening it was when I was told at my first appointment that the surgeon was almost certain that I had cancer too. Sadly, this was confirmed the following week. I had a lumpectomy in 2010, followed by a double mastectomy the following year.I couldn’t have reconstruction, due to previous non-cancer related surgery, but I cope well with my prostheses.
It is disappointing not to be able to have reconstruction at the same time as your operation. Please don’t panic at not having the option of reconstruction at the moment due to COVID19. You can always have a reconstruction at a later date when this pandemic is behind us. There are a number of people in the same position as you at the moment.
As someone who has had a double mastectomy, I can assure you that there is nothing to it. You will be a bit tender for a couple of weeks, but will recover quickly so long as you do your exercises regularly.
You will not have many questions to ask until you get your results and know what you are up against. At your age, here’s hoping that you have caught it early. This is a particularly difficult time to be all alone to deal with this. Do you have any friends who you could discuss how you feel openly over the phone or What’s App? It really does help to have support of friends or loved ones at this time.
Now that you have found this forum, you need never feel lonely again, as we are always here for you. Please let us know how you get on next week.
Kind regards,
Jolamine xx
7 posts since
27 Mar 2020
Hi alb20,
I’m very sorry to hear your diagnosis. I’m 25 and was diagnosed with breast cancer on the 23rd of march of this year. It came a shock to me as i have no family history of breast/ovarian/prostate cancer, and the dr was fairly sure it was just a build of tissue, but obviously the biopsy showed differently. I think as they’ve spoken about potential treatment for you, maybe they know it it cancer and are just waitingn for the results to confirm this..?
However, I completely understand what you are going through and how you are feeling. When I was told it was cancer, the dr and a nurse were there to explain the next steps, including fertility (possibility of having my eggs frozen) and genetic testing, and the next step of tests that would be done.
The last couple of weeks have been a bit of whirlwind, i’ve had an MRI scan, another biopsy in my armpit to check the lymph nodes, and i’m having a CT scan tomorrow. I understand that the information you have been given can be confusing and overwhelming as i feel exactly the same, I still have my doubts and worries.
I will say that when I spoke to a member of the fertlity team, she did say that it was unlikely that i would be able to get my eggs frozen at this time, due to a lot of the fertility departments in my area closing due to the pandemic. She said that a lot of women are offered a hormone injection when they start chemo, that puts you on the menopause, and then when you have finished chemo, you come off the injections and apparantly things go back to normal (periods ect) However i need more information on this, and even the genetic lady i spoke to recommended that i still look at having my eggs frozen for the best chance. However it may be different for you in your area, but its a case of finding out.
I had phonecalls from the fertility team and the genetics team after a phonecall consultation with the dr about my MRI and ultrasound results (all of which happened on the same day),so possibly you will be contacted about these things after you’ve had further tests? But it may be worth asking that as one of your questions when you speak to the dr again.
My sister is a junior dr, and she composed a list of things that i may find beneficial to ask the dr, so if you’re unsure of what to ask here’s what she gave me:
1) What type of cancer is it?
2) What is likley treatment?
3) What is the likelihood of cure/prognosis?
4) What is the likely treatment regime?
5) Do I have to stay as an inpatient for chemo?
6) If surgery is needed, what kind? And would i need reconstructive surgery?
7) Would i need radiotherapy afterwards?
8) What is survellience afterwards?
9) Are there any trials currently that would benefit from?
10) What is my priority of treatment regarding the pandemic and when will it start?
11) How can i prepare myself for treatment/surgery?
12) What after care will i need?
I had the same concerns as you about when treatment would start, as the dr said they are apprehensive to start chemo,and even if i had surgery there are not enough beds in hospital, so its a waiting game really. I may possibly have to have a mastectomy, depending upon what the results of the gene test shows, if i’m highly likley to get breast cancer again the future i reckon they would suggest a mastectomy best option. I completley understand your concerns about this, and i do feel like this virus has put us in a worse position in a way, as they have limited resources which has limited our options.
I was told that after my MRI scan the cancer was just in the inital breast, that it hadn’t spread, however i thought this meant spread to different area’s of my body, but it just meant to my other breast. The CT scan is to look at the tumour in more detail so that when they start chemo they know the best way to go about it, however i’m still paranoid that the scan will show it has spread to other area’s, so i fully understand your worries regarding that aspect. But all we can do it wait for the results and deal with them accordingly.
The way I have coped with all of this is taking each day as it comes, i find that by looking into the future it makes me feel overwhelmed and upset, so i try not (which is easier said than done) The nurse explained to me that being younger and being diagnosed with breast cancer, our needs differ slightly then to that of older women (such as thinking about having children etc) so please don’t feel like you are alone in this. I know what it feels like, the worry and uncertainty of it all. I didn’t realise how much it would actually effect me, i think i was quite niave to not look at the bigger picture (such as possibility of kids, having breasts removed etc.) I too cannot see all my family properly due to the lockdown either, my parents aren’t even in the country atm, so it can feel like a lonely experience. But there are plenty of people to talk to on here, and other support groups, who can offer advice and guidence on how to deal with difficult things (probably better than me! haha) so please know that you always have a virtual support system around you. I think your dr should do more to offer you support, and the nurses should be contactable throughout your treatment, no question is too big or small. I’m sorry if this is very long (and waffly) but i just wanted to share my experience so that you know we’re in similar boats. I hope your results go as well as they can (sounds silly I know) but you can get through this, we can get through this.
Please know I am always here to talk to, and that I hope you found some of this information useful.
Sending positive thoughts and best wishes x
39 posts since
13 Feb 2020
Hey sweetheart
I am so sorry you are going through this and especially now.
I’m 47 and was diagnosed with triple negative grade 3 invasive ductal cancer. Original plan was chemo to shrink then lumpectomy and radiotherapy. Two days before chemo it was cancelled and I was told it would be a mastectomy no reconstruction. All my positivity and trying to be strong was upended and I feel like my world been tipped upside down. I’m also really angry with all these people who cant stay home!
But here it is, I had a mastectomy on Tuesday as a day case so I have been home 48 hours and I’m.doing great. I was terrified of surgery but came through it. I was terrified of what I’d look like but now I don’t care, I’m just glad I’m still here. I won’t be having chemo because I’m not compromising my immune system. I’m alive for now and if it comes back I’ll deal with that then.
You are young, you are strong you have a whole life ahead of you. Right now, dig deeper than you ever thought possible and know that you will get through this. If its gone anywhere else, worry about that then. Right now, deal with what you need to do to save your life.
Sending you massive hugs xxx
19 posts since
18 Dec 2019
HI, im very sorry to hear this, you are very young and it seems so unfair,i know….. i am supporting a loved one of 39 diagnosed with Her2 pos BC at the beginning of Dec, i can honestly say the day she got the diagnosis was the worst day of our lives, she has small children and her first thought was of course that she was going to die…i think everyone reacts like this…..the first weeks were a complete horror and stress of one test after another, mrt, zintigram, cardiologist, oncologe, scans etc…it was a horrible time but we got through it and 4 and a half months later shes doing really well and that initial anxiety has faded, its not gone completely, how could it?, but having a treatment plan and getting on with it does tend to reduce anxiety to where you can see things a little bit more positively and put it all into perspective…..im assuming you now have your diagnosis? i dont know if its a positive for BC but even if it is, please believe me that everything is do-able, chemo is do-able, not great but you get through and survive!….if you have to have it try to remember that it is not the enemy but a friend who is there to get you well again!…….remember most importantly that BC is highly curable today and it is NOT a death sentence!!!……you are young, which can be a huge advantage to fighting any disease, at this time with the added worry of the corona virus it is not easy i know, but the caution you must take having treatment is no different than without the corona virus, you must adhere to the hygiene rules and the isolation, which you would need to do anyway……i hope you have support from friends and family and you can always talk to us here…..i know how much that helps…i wish you all the very best and believe me girl…..you CAN do this and come out the other end just fine…..let us know how you go on…..xxx
8 posts since
6 May 2020
This is extremely helpful thank you. I’m 28 and just been diagnosed with grade 2 breast cancer. I’m (otherwise!) super healthy and this is all a little bit of a shock. I’m relying on my doctor and dentist friends for advice to get me through. So fab you have a jr doc in the family! Let me know if you want to chat. We’ll be okay 🙂
7 posts since
27 Mar 2020
Hi Dee32,
I’m glad it was helpful, hopefully wasn’t too overwhelming! I’m sorry about your diagnosis, but yes we will get through this 🙂 I would be happy to chat! Hope you’re keeping well x
16 posts since
21 May 2020
Hi Alb20,
My daughter is very much in the same situation as yourself. She is 24 and just been diagnosed with BC.
She would like to chat with others in same situation, not here as very scared atm.
4 posts since
14 Jun 2020
Hi
I’m 37..I was showering in April.and came across something that felt like a bruise but wasnt visible at all in my right breast. I thought it might be period related as I was due to start. A week later it was still there I spoke to my GP who sent a referral to a breast clinic. It was Tuesday when I saw the consultant who thought it was a cyst but when the radiologist had a look she said she would do a biopsy and mammogram. She wrote her report whlist I was there and sent be back to the consultant, he was joined by a Macmillan Breast Nurse, although the biopsy results would take a few days he said they thought it was cancerous. I was on my own as I didn’t think it was anything. After I finished the Macmillan nurse took me to a side room sat with me and explained what would happen and supported me. To be honest I would encourage you to seek the support of the Macmillan nurses they go to every appointment with you and are your key worker and speak with you after. Even after surgery they support you with questions you have. I got my biopsy results the same week on friday and I was introduced to the oncoplastic surgeons. They have been great, they showed me pictures of reconstructions to give me an idea if what lumpectomy and mastectomy reconstruction look like. originally I was going with lumpectomy but the mri showed a second and third place in the same breast that might be cancerous. On one they did a second biopsy and it came postive, the third they couldn’t find via ultrasound. Went with mastectomy with immediate reconstruction. As it is covid the NHS are working with the private sector. I had my surgery at a private hospital on the 2nd June. My NHS surgeons met me there on the day and did the surgery there.
The reading I did seemed that people did reconstruction as the final thing but my surgeons did it as the first, they called the surgery nipple skin sparing mastectomy with reconstruction. I’m waiting to see if I have to.have chemo radiotherapy I do waiting to see what areas.
I googled a lot but the Macmillan nurses are the best people the other thing they did was give me literature to take home and read based on the conversations I had with the surgeons. I go back and read based on what bit of treatment I am on, its alot to take in.
If anyone has questions please let me know. Praying for everyone’s health and happiness
18 posts since
17 Jun 2020
Hi I cant be of much help because I literally got my first diagnosis of breast cancer yesterday – still need to do CT scan etc for a full diagnosis but I am also 23 years old!
I found it very difficult to be properly referred In the first place – it was a phone consultation with my GP then an actual appointment where he said the lump felt normal and like a fibroaedenoma but referred me to the breast clinic anyway.
That referral got rejected and changed to a phone consultation because of my age and low risk factors and obviously not wanting to see many people during covid 19- took a few back and forth but eventually got an ultrasound and biopsy.
I am so thankful my GP persisted and got me re referred – my lump already seems to be at 4cm which tells me it’s probably been there for a while.
So much to take in at once
1 posts since
22 Jun 2020
Hi,
So sorry to hear about your diagnosis.
I’m 27 and was diagnosed with breast cancer on 26 March 2020 after finding a lump in my right breast. Two weeks later (8th April) i was in surgery getting a mastectomy with no reconstruction due to the global pandemic. At the time i was extremely down about the thought of having to wait for the reconstruction as i just wanted it all over with in one operation but in hindsight I’m glad I’ve waited as it’s given me more time to consider my options and get my head round things.
At first i was told they didn’t think i would need chemo however a week after my surgery i was told that the cancer had spread to my lymph nodes and i would need 6 rounds of chemo over 18 weeks with radiotherapy starting after that.
That’s actually another reason im glad the reconstruction was delayed as my consultant says radiotherapy can mishape the new breast often resulting in another surgery to fix it.
As some of the other women have mentioned below, i am also getting hormone injections to stop my ovaries over the next 5 years which should stop and resume a normal cycle. I started getting the injections a week before my chemo started. I was unable to freeze any eggs or get any fertility treatment as the labs are currently closed but i don’t know when they will resume again so i would discuss this with your oncologist once/if you get to that stage.
I’ve found forums like this particularly the McMillan page along with the support from the breast nurse very helpful, however i do understand how daunting the whole experience can be.
Please get in touch if you have any questions or just want to someone to chat to.
Sending lots of love xx
8 posts since
6 May 2020
Hi J94
I hope you’re keeping well. Have you any news on your diagnosis? I’m really struggling to find relevant info for people in their 20s (or late 20s if I’m honest as I am 28!). I am so grateful for everyone’s advice and support- but even my consultants often caveat their info and stats with ‘well this stat typically holds for someone diagnosed in their 50s/60s.. we don’t have precise data for your age’.
I’ve just moved out of Clapham to Sussex to be in the countryside for a year- near friends and family/ hopefully find it easier to ‘shield’. I’ve been feeling so positive recently- I don’t want to jinx it, but I have hardly noticed chemo… (apart from now being bald). I was warned by doctors and friends and family that it would be difficult, and of course it is no walk in the park, but I feel really quite well.
Unfortunately today I’ve been told I have a dodgy BRAC gene so will need to have a double mastectomy as soon as I’m done with chemo and then perhaps (once I’ve had children?) a hysterectomy/ ovaries etc removed by the time I’m 40. Once again I feel angry this is happening. It’s silly but Covid is making me even more bitter about the whole thing. I just wish I could at least have some company or even face to face appointents with my expert consultants. It all feels so alien over the phone. Anyway, I hope you’re keeping as well as can be. Keep in touch. Dee xx
23 waiting for full breast cancer diagnosis during Covid-19
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