Cancer Support Thread #81 Newbies welcome

[TopOfTheCliff]

This is a kind and friendly place for those with cancer or those worried they have cancer (or who used to have cancer) to hang out.
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Just back from hospital and unfortunately ct found another mass on left adrenal gland which they said may mean at stage 4 breast cancer, another ct to just look at adrenal glands. They did not seem to know much about adrenal glands and just rushed in and out, tried to ask questions, was told its pointless atm. Then doctors left, nurse was lovely but had so much wanted to know. They are at least booking surgery incase turns out not to be adrenal cancer and will cancel if is. Annoying thing is I had a ct scan 5 years ago which showed enlarged adrenal gland on other side and private doctor said my gp should monitor and he refused. Also picked up scarring on lungs, they think from covid and weak bones but not bone cancer.

@thereisonlyoneofme I've sent you a PM!

@Silkieschickens I am so sorry to hear about your news. It feels like the medical team involved today kept brushing you off which is completely unacceptable. Considering you have so many questions swirling about in your head, and it’s your life they are talking about! However, the crucial word here is MAY, not IS, so until you have the adrenal gland CT it’s all just speculation. But I know how difficult it is not to know for certain. Have they mentioned any kind of treatment plan beyond surgery (chemo, tablets, rads)? A big hug from me and please let us know how you get on. Have they got you a date re: additional CT scan?

Thanks Balkan They said if at stage 4 they will cancel surgery but they would not say what there would be instead just tablets and its pointless to discuss it. If stage 3 will be surgery. But could not get anything out of them on chances it will be cancer or what happens next, said CT would be incredibly soon but then said they would see me in 2 weeks.

I have had through 2 pages of notes but does not mean much to me, really needs an adrenal expert though a quick look online looks like it might need surgery and radiotherapy even if benign.

It sounds like you’ve been treated terribly @Silkieschickens, I’m so sorry that you’re having to deal with that on top of the worry of a firm diagnosis.

I hope everything went ok with your mammogram yesterday @chuntersalot

@balkanscot any idea when you’ll get your results? The waiting is torturous.

I had my biopsy results today- unfortunately I have lobular breast cancer. It is oestrogen positive, HER2 negative and, as long as the MRI doesn’t have any surprises, I will have a lumpectomy in January followed by radiotherapy then hormone therapy. I didn’t think to ask the grade but my consultant seemed quite positive.

Thanks Nik Sorry to hear you also have lobular breast cancer. Though encouraging they are positive and hope the operation can get rid of it all for you. I have the same type lobular, oestrogen positive, HER2 negative but sounds like yours has been caught earlier at least.

Hello. Newbie here. Waiting for tests to confirm how bad it is. It’s cancer, but 2 more biopsies and another CT to confirm spread before I get a treatment plan. Im out of denial and into the the crying/in shock stage right now. I have young children and can’t process this yet.

Welcome Damn and sorry you are going through this as well.

Sound at a similar stage to me, cancer confirmed, one is breast is stage 3 lobular, HER2 neg, oestrogen positive, had MRI lump 5cms x 4cmx x 4cms. Then CT showed issues in 3 places including one they think may be mets (adrenal), one they think is probably not cancer and is scarring from covid (lungs) and weak bones not cancer. I have also gone from in denial and quite happy to just crying and wanting to scream. Especially as they now said they may not do surgery on breast and won't say what new plan will be and its 2 weeks until next meeting whilst the cancer is growing and not being treated and no idea what happens after that.

What type of cancer have you got? I can offer sympathy and hugs, just wish could offer you a cure. I am also worried sick for kids esp my boy with SN and keep crying about leaving him.

Hello @Silkieschickens sorry you are going through this too. You seem to know a lot more than me. Obviously better at asking questions! I’m taking my notepad next time! I’ve had a lymph node biopsy but they don’t know if it’s a lymphoma or bowel cancer yet - they have identified a growth on the bowel but haven’t confirmed if that’s the origin so thats the main biopsy I’m waiting for. But the way he talked I think thats what they think is the most likely. And they’re checking for other areas. I didn’t write down or take in everything he said. Liver, kidneys, gall bladder and ovaries are clear, I remember that. My first ultrasound (before the Ct scan) identified something in the pancreas that I forgot to ask about and also he didn’t mention lungs as being clear, and he asked me if I’m a smoker so I guess they’re checking those out more.

How old is your son? How much help dues he need? It’s odd isn’t it - Nothing for me feels important, I just don’t want to leave my girls. Maybe in a way that will help us though - my girls just woke me up (I had finally gone to sleep after a tough night) and although I could have done with more sleep, it’s good to make me snap into everything I can and need to do. I’m cuddling them that bit tighter right now!

They arent letting me ask questions to the doctor, he just walks off but they send notes through to gp ccd to me and then I look it up. Sounds like you are having as much fun as me with testing there. Yes all I care about is my kids, my daughter is 16 and doing gcses, just changed schools mid gcses and moving again for 6th form and then my son is 14 and very bright but asd and pretty much mute now, has a full time TA and needs me full time, he is more like a 5 year old girl, has millions of bunny toys and is often followed by admiring 5 year old girls after the bunnies and husband is great at practical things but useless at school, emotional etc problems and half deaf but wont admit it. How old are yours? My DS says he is leaving home at 39, had hoped to be here with him but looks highly unlikely atm. Plus one cat, two silkie chickens and an indoor rabbit.

I am so worried atm, treatment plan has gone out the window and just doing lots of tests with no treatment being planned due to adrenal gland thing and they are saying surgery may not happen at all now. May need to go private but really should not have to but wont be needing retirement savings now. DH is French and been investigating treatment there. Someone from Australia offered to find people there, that was tempting, could be on the beach with penguins.

@Silkieschickens the standard NHS protocol for de novo Stage IV breast cancer is direct to endocrine therapy (letrozole and a cdk 4/6 inhibitor like palbocyclib, denosumbab for bone strengthening, and if you aren't post menopausal, an injection to stop the ovaries) and surgery is no longer an option. I know it seems weird, but at that point it's important to get the distant cancer under control and a surgery and recovery would delay it. A mastectomy manages local disease to prevent it from spreading, which at stage iv it already has.

However, adrenal gland is not a real common place for mets (though you are lobular, which likes slightly odder places than ductal) and if the common places are showing clear that's pretty favourable too.

There is also a growing school of thought/research/practice in stratifying stage iv patients and treating those with limited metastatic sites with local therapies in a whack a mole type approach to achieve lower tumor burden and longer term remission between mets flare ups and manage endocrine therapy resistance. But.. Not standard of care here, at least in the NHS.

If you do turn out to be stage iv I would suggest seeking a second opinion either from a top notch French hospital or via a private top notch UK consultant (preferably with breast cancer research focus like at the Christie, etc) as to treatment. Some US super cancer centres like MD Anderson or Dana Farber also do remote second opinions for a cash fee (which if I remember correctly is about what a UK private consult would cost anyway), which you can book online via their portals. It may give you peace of mind that the direction set is the right one or possibly provide a different option that you may need to go private to obtain.

Unfortunately your experience Friday is not unusual, I went through something very similar. I never felt more like a statistical hunk of meat until I went through that NHS diagnostic process.

Thanks so much Herbal that is really helpful. I could not get that information out of them but that is what I wanted to know. Sorry you had the same.

I have no idea what the chances are it is cancer, the doctor spoke like it would be stage 4 and the nurse like I would live forever in a fluffy happy world and would be stage 3 but this didn't appear based on facts more she wanted to be kind. I don't know why the radiologist said potential mets indeterminate, from what I can see its below 30% are cancer at this size but if the CT shows things like jagged edges and blood running through its much more likely but its hard to tell from a ct and they only know after surgery and testing. It says its much smaller than the average cancer there and over 6cms is treated as cancer and mine is 3cms. But it said testing can take ages and that is what is concerning me, all the time we are delaying treating the breast which they currently think isn't in lymph modes but it is close and if it goes in the odds worsen. It would be really useful to know why they said second CT, was it just size (when odds would be on my side) or more than that (when it is likely to be stage 4). I just hate that you can't ask about anything, are spoken to like you don't have a brain and only ambition should be to look good. I could deal with that for stage 3 as that treatment plan seemed fine and moving quickly but now at stage 4 really feels like you are being put in the bin and you aren't worth 5 minutes of their time to explain things and they are just doing cheapest treatments not the best. Also there is no treatment at all and no start date for anything and the cancer is growing but its apparently pointless to ask that and I should not be annoyed the NHS didn't monitor this from 2018 like private told them to.

Thanks so much for hospital recommendations, will investigate those. It would be much easier to stay here as kids and one doing gsces, other doing first year of gcses but if that is what it takes to get a better outcome and we can afford it that is what we may have to do though really annoying you have to pay for it. Tried asking my friend who is an NHS doctor and married to another one but just getting the isn't the NHS amazing and just do as they say line, but been there, done that and probably won't see my kids make 18 if this is stage 4. Sorry to be so negative about stage 4, some people do survive 10 years and hope you are one of them Herbal

Really find out who your friends are as well now don't you though its not really emotional support I need its treatment. At least got lovely support from one friend and husband and a few kind ladies going through cancer and general MN is great.

From what I can see on medical sites online the normal treatment for the adrenal part at my size even if benign is surgery and then radio if cancer. Its a small size and currently not the size normally spreads at. Only way of telling its cancer with accuracy is surgery which is biposed, looks like recovery time is 4 weeks or so depending on method. I thought the one in 2018 was on other side but looks like they don't disappear by themselves so presumably same side. If they can get hold of old CT from 2018 and same side or even if not the growth rate should show if cancer - over 0.6cms per year I think is cancer and normally non cancerous its 0.3cms per year max. But no idea if getting that CT will happen, they think they can get it. The doctor got so excited when I said about that CT showing enlarged adrenal gland. He did adjust at that point from it will be stage 4 to it may be more hopeful but really depends on sizing. I vaguely remember 2cms but not sure if I imagined that and not sure I was ever told and certainly not written anything down which is unusual for me as normally I write everything down.

@Silkieschickens it’s shocking that you have been left like this for another 2 weeks, in no man’s land, imagining all sorts, which is destroying you mentally. I really hope that by mid-December there is a clear diagnosis, whatever it turns out to be (and I am SO keeping my fingers crossed for you). And yes, explore all the options available to you, even if you have to go private.

@Niknakpaddywhack I am probably going to hear next week. If not, I’ll give them a ring to put me out of my misery. My BC was oestrogen +, HER2 -, it had the highest oestrogen score possible, 8, I think. But I am BRCA2 positive. Bleurgh. Your treatment plan sounds on track. I was on Tamoxifen until I had both of my ovaries removed (preventative), then was put on Letrozole (post menopausal aromatise inhibitors). After the reoccurrence my consultant has switched me on to Exemestane.

I have not realised what a bastard cancer is mentally, too. It has left me with panic attacks, severe anxiety attacks, constantly on the lookout for any aches/pains, I feel like I am unable to breathe and relax as my brain is always on the lookout. So, so exhausting. I have been going to Maggie’s for the past 8 months, and will still be going for some time to come. GP has prescribed me beta blockers last week which I haven’t taken yet. Maybe I should. I am also dipping in and out of Headspace. My breast surgeon has told me that what I have been suffering from (mentally) is akin to PTSP.

I don't know where you're looking @Silkieschickens, but adrenal "incidentalomas" are pretty common. There's some good guidelines here: www.nbt.nhs.uk/sites/default/files/Suspected%20Adrenal%20Incidentaloma.pdf
I know it's hard, but try and wait and see what the scans show, and how your old CT compares to this new one. This is definitely the hardest stage.

@balkanscot I hear you with the anxiety and panic attacks, I've been taking beta blockers since all my cancer troubles started nearly two years ago and they really help, they just 'take the edge off' for me.

Thanks Balkan Yes this one was dreadful from a mental health point of view, I was fine until this meeting then could have jumped off a cliff if I didn't have kids after it. But then I thought I have lots of savings which I will never be using in old age now why don't I find somewhere were they have doctors that will discuss with you and where they will treat stage 4 with surgery. Felt very angry about it but at least feel like I am not disposable now. DH is French and has his French friends looking who have links to a top Paris hospital and their survival rates are a few percentage points higher than ours but maybe better detection. DH says you can have an online consultation with them and see how they would treat, we can finance it and DHs friend thinks I may even be eligible for free treatment as the wife of a French national via his Mothers account. I am not sure as he lives here and is not eligible himself at the moment. If the kids were younger would just all go to France but they are both gcse years so not an option but could stay with his family. Would prefer to be with my family here but if it adds to chances would seriously consider it.

Thanks for that Starmer Useful to see what NHS does. I am hoping it was the same side 3.5 years ago - it says different sides but that seems most unlikely as from what I read they don't just disappear untreated. I think its much more likely same side and at the time detected the private doctor thought it was benign and I had blood tests for cancer which were clear at the time, no idea if they pick up adrenal but there were lots of all clear tests and a bad infection picked up which NHS tests same day gave me all clear for, think they just did dipstick. I am mainly looking at academic papers or hospital things, like this one advancingthescience.mayo.edu/2020/01/30/a-breakthrough-in-distinguishing-benign-adrenal-tumors-from-cancerous-ones/ which says 30% are cancerous at 4cms and mine is below that by 0.5cms. If it is same side your paper I think says only 0.2% become cancerous so that is hopeful. I hope they can track down old ct and the measurements would be the best indicator. As it was for bladder cancer I was only given a few details as priority was I was clear of that.

What I don't understand is how it could have spread, both appear locally contained. No expert but via blood looked only option but I am had so many normal blood tests but maybe that doesn't pick up but the one in May 2018 was cancer blood tests. The only odd ones have had where when I was in hospital with covid in September when one liver result was out quite a lot and quite a lot of inflammation in the body. Lymphocytes and folate are always very low but normally doctors admire my perfectly perfect blood tests.

Balkan I have not had panic attacks yet but did have what they put as a vasovagal reaction in the meeting on Friday so they lay me down and put feet in the air, was surprised they knew I was so dizzy but all 3 said at once and apparently I changed colour to white.

One weird thing I am having is I keep seeing things which aren't there, presume its just a stress thing as only started on diagnosis. DH thinks its lack of sleep. I looked it up and it said in patients last days they get this but definitely don't feel like its my last days.

I put up some Christmas light up animals though DD took the penguin.

Welcome @Dammitthisisshit and @Niknakpaddywhack to the thread nobody wants to be on. The time at the beginning when they are investigating is terrifying but necessary. My wise DD who is an oncologist says it’s like playing a hand of cards. Every test turns over another card so they can plan better treatment for you tailored to your situation. Knowledge is Power!
@Silkieschickens you have had an awful start! Hopefully the team will conclude your adrenal thing predates the cancer and is irrelevant. Fingers and everything crossed for you.
I am at the other end of treatment just beginning to feel I can carry on with life despite all the collateral damage. Someone said it’s like driving a car with the engine warning light on and just keeping driving! Yesterday I rode a 210km bike ride in wind and hail and finished within the time limit in under 14 hours. I am very happy as it’s been on my wish list for years and I really didn’t know if I was ready to do it. Weirdly even though I’ve got lymphoedema in my breast and arm pain and can’t even knit or stir a Christmas cake it all settles when I ride my bike. I think it’s all the panting up steep hills
DH is so proud of me as a year ago I was still having chemo, bald and fat with a broken ankle. I’m proud of me too!
I’m starting to get scanxiety now the mammogram is looming. I had a dream my cancer had spread everywhere. I’m so forgetful it must be brain mets. The joint pains are all bone mets not arthritis. Don’t you hate your brain sometimes? Best to keep it busy so it can’t catastrophise!
Happy Sunday folks x

@TopOfTheCliff 210km is amazing! Especially in wind. I cycled north to south of uk once and had thighs of steel by the end of it but have never done that much in a day (bet you ache today though )

@Silkieschickens I’m sorry you are having a bit of a mare getting a treatment plan. I’m finding the wait excruciating and it hasn’t even been long. I can’t help at all with what’s going on but it sounds like a few lovely knowledgeable people on the thread are managing to shed a little light. In answer to your questions my children are 6 and 7. Way too young. Oh and I have 3 cats, 6 chickens and a blind rooster (hello anyone who recognises me with that) no silkies but 3 of them are half silkie so they have normal feathers but tufty heads.

@Silkieschickens that sounds truly exhausting. I'm no optimist but hopeful that the adrenal thing is an annoying red herring. It's such an unusual secondary to BC the drs may never have even had a case like this before -maybe that's why they have communicated so badly (I think this may explain some of my own poor experience in that department).

I'm just off my second go-around on steroids/sleeping pills. 48 hours after last pill and cough is back just hoping won't pick up Can't keep doing the steroid thing though.

Dr is recommending I stop treatment completely now - to be confirmed after MDT this week. Was a bit surprised but also relieved - issues just keep piling up. It's weird to think that if it's coming back it's already there right now - so either I'm Ok or I'm not but I can't know. Just watching and waiting. Maybe I will be back in a year or two - maybe I'll still be prodding my boobs at 90. Who knows......?

@TopOfTheCliff that's a serious bike ride! I'm also keen to work on my fitness and collateral damage from here on.

@MrsPnut hope for once things are going smoothly!

Acinony - Thanks, yes I first had the vibe from him he thought it was cancer in the adrenals and also possibly lungs and then I wondered if they had not much experience of this and did not know what to do, neither of which were very reassuring thoughts. The nurse seemed very optimistic but it was obvious the doctor disagreed. The second silent doctor was odd as well, which makes me vere towards what you suspect, initially thought does not look good, then maybe he is a trainee but then thought he is about 50 and dont think he is. Hope stopping treatment goes well for you. The lung thing is only 6mm and radioligist thought scarring which seems plausible as just had covid month before.

Well done on cycling Top I am just doing 14 hours in bed marathons though I am excellent at them.

Aww Damn your children are so young, hope they can keep you going for many years to come.

Just spent a lot of day crying and thinking about dying though dying does not bother me other than for the kids and DH, its the treatment that scares me. I want to be like my great aunt who died in her thatched cottage of breast cancer untreated and made lots of lovely cakes and dried flowers. I keep crying as I want to be with her again but I have to go through this for the kids and my husband cries if I talk of dying. I have been clearing all my emails. I will try phoning on Monday as think if I could get an idea of what is going on and some questions answered might seem like worth trying to fight it rather than a lost cause. Some people just expect you to be strong and say oh you have a breast cancer nurse, basically they dont care. But some lovely people too.

When my vaginal cancer was discovered it was thought to be a secondary because it is such a rare primary cancer. I had a CT, PET and MRI scan to check for spread which found my breast cancer. It wasn’t until my biopsy results were back that my GP was able to tell me that it was a primary not a secondary.