There’s a lot nobody wants to tell you about this breast cancer journey……………

Going through breast cancer treatment Surgery
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There’s a lot nobody wants to tell you about this breast cancer journey……………

And I get it, the people who’ve been through it don’t want to overwhelm you with too much information and the medical professionals simply haven’t got the time and resources so unfortunately you are a tiny part in a huge, clonking NHS machine.

This can be extremely frustrating if like me, you want to be fully informed and knowledgeable about the situation. The Breast Care Team “drip feed” you snippets at each stage; they don’t know what information other members of the team have given you.

As soon as you’re referred for that suspicious lump you have lost control and need to surrender yourself to others because they now dictate your life’s journey for the immediate future. This plays havoc with the mind and the hardest part of it is ……..WAITING. First waiting challenge is for appointments (for ultrasound and biopsy, CT scans, enhanced mammography, DEXA scan, surgical planning, oncology planning, pre-operative tests, surgery date, (and post surgery there may be pre-chemotherapy tests, port/PICC placement, heart scan, oncology start date etc etc….don’t know yet because I’m only on day 10 post surgery)). Next is the wait for results (because “that will be after the next weekly MDT meeting - you’ve missed this week’s meeting because your results came in after the patient list for this week had been finalised”). It’s agonising!

Of course, there’s a knock-on effect of all this waiting and that’s the anxiety it creates. So then you have times of complete overwhelm but getting the mental and emotional support you may need in those times is tricky because guess what?….the counselling service haven’t got a slot available to see you for 3 months.

The Breast Care team do their best but they’re understaffed and their caseload is overstretched. So, if you call at the wrong time you may be dealt with short shrift and feel like you’re just being a nuisance.

It’s up to you now, you may be lucky and have a strong, supportive network of family, friends, colleagues around you or you may be much less fortunate and have to rely on your own efforts /research/online resources. Of course the problem with seeking advice is that anyone can only ever advise on their own personal experience and no 2 people are going to be in exactly the same position in terms of their situation and the biology of their individual cancer. It’s a bit like pregnancy and childbirth, it’s different every time and no 2 people will have the same experience.

Nobody mentioned that the staff on the recovery ward will be desperate not to have to admit you for an overnight stay in hospital so you’ll most likely go home to fend for yourself against the nausea and vomiting post anaesthetic.

Nobody mentioned that the BCN/consultant will not have time for anything other than attending to your wound/dressings/drains at your post-op appointment and then you won’t be seen again for another 2 weeks (for a final check and pathology results).

No district nurse appointments nowadays….it really is up to you to sort yourself out and only bother the BCN team if you’re in a pickle.

Nobody mentioned how the post-op pain gets much worse once the drain(s) come out! And you’ll be a Paracetamol/Ibuprofen junkie.

I’m only 4 months into my breast cancer journey so there’s probably lots more funky stuff to come……..

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Hi Jock,

Welcome! Sorry you find yourself here but there are lots of great people on here with all sorts of experiences who will support you. So keep posting.

I am further on than you, had surgery, chemo and radiotherapy last year but I felt much the same as you - all the waiting for scans, results etc. It really is the hardest time.

I think part of the drip feeding is that they don’t really know until all the results are back from surgery exactly what your path will be and even then that can change depending on your response to treatment. My path ended up being different from when I first had biopsy results.

I don’t know if there is a Maggie’s Centre near you? I found them to be incredibly helpful in the early days when I was in a terrible state. They offered support and I could have had counselling from there too.

I ended up asking for things that weren’t initially offered so maybe if you are struggling with some particular aspect, speak to someone. For example, I was just told to remove my own dressings after surgery but as the time came I didn’t feel confident about that. I said so to bcn and she booked me in for an appointment with a nurse.

I hope the waiting is over soon and you can get on with all the treatment. I wish you all the best.

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You’re absolutely right Helenback on the drip feeding information point. I didn’t mean to appear critical of the BCN team with that comment; they do a brilliant job and after reading lots of posts on this forum I can see it’s very common for the goalposts to change once the pathology report comes back.

I hope that you’re in a much better place than you were this time last year :smiling_face_with_three_hearts:

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Hi, it is a tough journey but it does get better. I’m not saying this will happen tomorrow, or next week or even this year but it does improve for most of us eventually. The not knowing and waiting I found was harder than chemo and 2 years of Abemaciclib. Sending my best wishes.

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Hi jock

One of my main beefs is that we are never given the full picture from which to make life-impacting decisions.

Never feel alone - there’s an enormous amount of shared experience on this forum. You will find opinions from both sides of each fence to weigh up.

My contributions appear (obviously) as MistyK with an olive green badge. I think you can access all my posts by clicking on my badge (and then again on the next screen).

I usually give long, detailed, honest, personal accounts on any topics to which I can contribute. These will be in threads on:

invasive lobular bc

surgery experience: (choosing) double mastectomy, axillary clearance of nodes, tidying of dog ears (lumpy excess fat/tissue post surgery), surgical healing process

lymphoedema (developed post surgery)

radiotherapy

choosing to stay flat (no reconstruction)

choosing NOT to take hormone therapy (fear, trying and rejecting)

being refused access to MRIs as a screening tool to monitor early changes when mammograms are no longer an option (lobular is often asymptomatic until advanced)

bisphosphonate infusions (when offered alongside hormone therapy) and associated dental awareness

(and probably a few others).

Hope you find lots of relevant, useful info on this forum, and the best of luck x

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OMG Jock. It ’s as if I’ve written your post. I think 99.9% of what you have said applies to me. I think your amazing to take the time and effort to put your post on the forum for others to read and relate to. My last experience with BC nurse upset me so much. It had been nearly 2 weeks when I emailed to ask if results of my yearly (yr 3) mammogram back. I was told it was clear (thank God) but also told it wasn’t 2 weeks yet, they were short staffed and they had other patients as well as me. I still can’t get over what /how was said to me. Really upset me, especially as first year or so of BC nurses support was amazing. I feel like I’m no longer important and left to get on with it now, yet BC impacts on me every day of my life. I have questions still but dont feel supported now to get answers. Seemed so different in the early days I’m sure BC nurses didn’t mean what she said to upset ne, but it did. I thought of calling back and letting her know but what’s the point. I don’t like making waves and I think it might. I’m in limbo. I’m having my last Zoldronic Acid infusion soon and no idea what happens next. I am really grateful for everything but feel more a number these days, rather than a person. I did what told and accepting if what was done. What happens now though? I feel in limbo. I take Letrazole, have yearly mammogram and finishing Infusions soon. I had BC (stg 2), a lumpectomy and CA in 2/12 of lymph nodes. I have lymphodema in breast and left arm. Other than yearly mammograms is that it now? I feel so unsure now, especially after BC Nurses comments. Apologies for the rant but…

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Hey @Bluebell22

I’m still in active treatment so haven’t experienced what you currently are, although there is one particular breast cancer nurse from whom, if she answers the phone when I call, I’ve come to expect a short, snippy response. If nothing else though, she is at least alarmingly efficient!

From my travels around the world of breast cancer, it’s become apparent that feeling a bit adrift and like you’re not being supported once treatment is finished is pretty common.

Breast Cancer Now have a free course designed to help navigate this called Moving Forward. I don’t know if you’re already aware of it? It might be worth taking a look if not and you feel you might need that bit of extra support right now. I’ve included the link below in case you’re interested.

Wishing you all the very best. x

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Hi @jock and thank you for posting.

An awful lot of what you say resonates with me. The part where you lose control of your body. You are in ‘the system’ and you are no longer the boss of you. I remember asking for a different appointment for an ECG, because I am self-employed and they offered me the one date where I had some work booked. I was asked ‘why do you want to change?’ I explained, but it was clear from the ‘audible silence’ that this was not an acceptable reason. I had to cancel the work and I lost valuable income. But that was a pivotal moment. I realised then that I wasn’t in charge, that I was part of their system and I had to dance to their tune.

What also resonated was the waiting game. You’re constantly in a state of waiting; waiting for news, waiting for the next appointment, anticipating the next treatment, anticipating the next body blow as you find out that cancer doesn’t play by any rules. It does what it wants. I’ve had a quiet spell since my op in March and my body is starting to feel like mine again (albeit an alien puff ball of swollen face, belly and legs due to steroid use). However, that is due to change as of tomorrow when I sign up for my adjuvant targeted therapy. Back to having no bowel control, bone aches, nails falling apart…oh the list goes on and on.

Yes we are in a system that is creaking with the strain and I feel desperately sorry for it. Yes you can feel like you’re being a little bit spat out at a certain crossroads on the journey, but I counter that by thinking of it as a fair trade-off. My needs being less urgent are a sign of my ongoing recovery, and I am acutely keen that every woman starting out on this gets seen as quickly as humanly possible.

I think this is where BCN and MacMillan, and Maggie’s if you’re lucky enough to have one near you really come into their own. There is so much support on offer in terms of pastoral care. I hope you’re leaning in to that to get some of your needs met. This forum is also utterly invaluable. I would not have coped without this community.

As for post-op care, it feels a bit unacceptable that you’re being left to fend for yourself, particularly removing dressings. I know that it can be a post-code lottery, and maybe I’m lucky, but there are lots of NHS hubs available for dealing with day-to-day medical needs. How accessible is this to you and how can you tap in to that if it is. I would definitely encourage you to talk to your GP. If you precursor all correspondence with the word Cancer, it is amazing what doors are open. You will get appointments you thought not available, you will also be offered drugs to help with post op management.

As per usual I have written an essay, but your words struck a chord with me. I also hope there is not too much funky stuff to come for you. I know how arduous this ‘journey’ is (I do hate the word journey as well).

Keep talking to us here. We can perhaps take some of the emotional burden from you. xxx

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Good morning @Bluebell22 :sun_with_face:

I feel quite saddened to hear how meanly the bcn spoke to you regarding your call for your annual mammogram results….where’s the compassion gone? I do think that compassion fatigue is a problem in any caring profession and understandable for those working in today’s NHS but it’s soul destroying when you’re on the receiving end of it. I really try hard to adopt Mel Robbins’ “Let Them Theory” when this happens to me ie. Let them say what they say but don’t let yourself be affected by it for the rest of your day……the words coming out of their mouth are usually a reflection of what’s going on in their life rather than personal to you.

I’ve listened to a few of Liz O’Riordan’s “So Now I’ve Got Breast Cancer” podcasts which are brilliant at covering the feelings you and so many of us are experiencing at one time or another (because they’re normal feelings!) and they are really useful in making you feel less isolated and providing resources/ information to help you back out of the darkness.

Obviously this forum is fab for providing a platform for us to “get things off our chest” to fellow bc patients who have the empathy we all need. Have you also come across the Macmillan.org.uk forum for breast cancer? They also have lots of online resources that you could access if you don’t have any local cancer charity organisations (which are also a Godsend - in my area of the UK it’s Lingen Davies)

I’m glad you appreciated my post - I actually was just writing down all my thoughts to get them off my mind and had the idea that if I posted it on this forum it might help someone else to feel a little less isolated so thanks :smiling_face:

I sympathise with your feelings on the “what happens now?” question. You’ve been through so much, your life has changed and you’re trying to navigate a new “normal” which is very challenging. Do you have a good GP surgery who can help you with getting your head around where you are now? Also, I’ve come across a reference to a book called “After Breast Cancer: A Recovery Handbook” by Sara Liyange which might be helpful.

Give yourself credit for how far you’ve come and be kind to yourself :heart:

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Hi Jock

8 months down the line after diagnosis. I’ve had the chemo, surgery and radiotherapy and am cancer free. However, absolutely the worst part is the waiting, even though I was hospitalised each time with chemo!

You will get there !

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Wow @jollysue !

Hats off to you, that’s a pretty swift timeline to go through so much :exploding_head:. It took 4 months from diagnosis for me to even have my surgery.

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Just had to say what an amazing messsage you hit the nail right on its head.

It’s just exhausting. X

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On the subject of post-operative attention from the surgeon - mine didn’t want to see the scar and see what a good job had been done, but I showed her anyway. I said she needed to see what a good job she had done and that I appreciated it!
But I agree, I was left feeling sort of abandoned by the hospital, but my local doctor’s surgery was amazing. They kept phoning me up to see if there was anything I needed or any help they could give. On the subject of anxiety, the doctor said it’s like coming face to face with a tiger! Your blood pressure goes up and you panic. Subconciously you know the tiger is still there. Just because you have healed up, and got over the treatment and medication, there is always the subconscious feeling that something dreadful has happened and could still happen. It is not conscious or rational thought. As a practical person myself, I try to take a practical approach, but there’s only so far you can go with that! If your subconcious is in a state of terror, it will keep popping up. It was a sort of relief to find out that most other ladies with BC also have anxiety.

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Reading these posts I can see that I am not alone in finding the waiting times the most stressful. I had biopsies on Feb 7th and on May 18th I will finally have a mastectomy. The worst part of the wait is seeing my breast enlarge further and become painful, but unable to speed anything up. Cancer services are the best funded areas in the NHS and even these sectors don’t work holistically. Very frustrating

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Nobody tells you that when you’ve finished all the chemotherapy, radiotherapy, injections and been discharged apart from the ongoing appts for annual mammograms and biannual DEXA scans and lymphadema nurses and the seven years on Letrozole, that you’ll never stop wondering when/if it’s going to come back.

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Hi Jock,

I.have had such a similar journey

I became a self researcher and ingested book after book. I probably read more books in 2 weeks than in the last 5 years. And pod casts and websites.

Brilliant breast care team. BCN does not seem to like me asking questions. Well in fact I dont bother now. I.know they are busy of course fab team otherwise. I.just resolved to find my own support and information. My GP has been great. I spoke to a menopause clinic about the endocrine therapy. I have yet to do radiotherapy.

Have you tried Someone Like Me having a person who has been in the process support you and also Maggies. Does your hospital have a psychological support service as well.

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Hi Jock I’m really sorry you find yourself on this forum I really hope you’re doing okay. Everyone on here is so nice & really supportive.

I have to say, everything you said is so right! I should have realised what was coming with the waiting game. When I first went to see my GP last January & was told I’d be seen by the hospital within 2 weeks. No, 2 weeks came & went & I ended up waiting a month for my first initial appointment at the Breast Clinic at my local hospital. And that was how it continued unfortunately waiting for appointments/scans/biopsies/results. It took until May to get my final diagnosis.

I waited almost 2 months for a bone biopsy because “there are very few professionals in this area (north west) what actually do bone biopsies” or so I was told. May I say, god forbid I ever need another bone biopsy because I now know that I would insist on being sedated for the procedure!! I’m a scaredy cat! Unfortunately I wasn’t told beforehand what to expect! In hindsight now, maybe I should have realised but I really didn’t.

And then, I kid you not, I waited….5 weeks for the results! Like you say, we are drip fed bits of information & so, I just kept getting told when I was calling, chasing up the results that “no, I’m sorry your results aren’t back yet” but they didn’t explain why.

Finally & sadly I was referred from the Breast Clinic to a specialist Oncology Hospital where I was told I had stage 4 Lobular Breast Cancer & the delay in getting results was because my bone biopsy had been crushed when the sample was taken from my right pelvis. I was told that 5 different specialists had had to really really examine the biopsy because of the condition of it. I was told it’s quite common for bone biopsies to get crushed upon extraction.

My Lobular Breast Cancer has spread from the right breast to my lymph nodes, top & bottom of my spine, my right femur & my right & left pelvis.

What you say about the fear & anxiety is sadly so true & very real. It can consume every waking minute of every day.

I am trying to get through mine by asking my GP for antidepressants/anti-anxiety medication & I am having weekly on-line sessions with a palliative cancer psychologist. When my lovely Macmillan nurse recommended I speak with a psychologist I said no, telling myself I’d be fine, just get on with it. Thankfully my nurse asked me again at a later date & I agreed. May I say that I would honestly recommend it to anybody who is struggling & needing a little or a lot of extra support. It’s the best thing I could have done for myself if I’m honest.

Keep talking everybody & love to all :pink_heart:

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My goodness @loki , you have been dealt a difficult hand of cards. Thank goodness that you have found the wonderful support of MacMillan and everyone on this forum. My thoughts are with you :heart:

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Hi Magl

I totally get what you’re saying and it’s very similar when you have incurable cancer. The Lobular Breast Cancer has spread to my bones & I worry a lot about it spreading to other areas & pray that it doesn’t go to any vital organs :folded_hands:

Love to all :pink_heart:

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Thankyou Jock you take care :pink_heart: