Cancer Support Thread 83 - Here comes the sun (hopefully)

[Silkierabbit]

Welcome to a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc or discuss life in general.

Please feel free to join if you are going through tests as well, hopefully they will come back all clear but if not we are here to hold your hand through the journey.

Named the thread in honour of the lovely LeslieKnope who did thread 62 in the same title who is sadly no longer with us but inspired me with how she was so lovely and kind with stage 4 cancer in her 20s and also the lovely PurpleUnicorns. Thinking of you both. Hopefully there will be some sun inbetween the difficult days.

May be useful to do introductions at start of thread. I am 49, lobular breast cancer, diagnosed Nov 21, after sent for tests then after being dismissed as nothing by GP in June. 46mm and 17mm tumours with 1 lymph node involved. Had 2 surgeries, currently doing chemotherapy, radio next then hormone tablets. 1 husband and 2 kids 16 doing gcses and 15 with SN and mute. 1 Maine Coone kitten, 3 silkie chickens and 1 indoor rabbit.

Try, I had 1 node and chemo but was Her2 positive so chemo was mandated as Herceptin is only licensed in UK with chemo I believe. Not sure how helpful that is but my neighbour was in a similar position to you and chose to have chemo about 11 years ago.

Try I was 6% benefit from chemo over 10 years on Predict Breast and I persuaded them to pay for oncotype and it took 3 weeks and came back high risk at 41 and virtually the same 6% benefit. I had 1 node involved. I also saw some research that 1 to 3 nodes involved pre-menopause is chemo benefit, post menopause is not. I was offered a choice of 3 chemos and went with the 12 weekly Paxs. I am not sure if that was right decision but without a crystal ball you never know, my oncologist said 94% chance no benefit and just the risks which she put at 3% over 10 years. I asked her if that meant 3% dead and she said no. I probably would not do for 3.2% and not sure I made the right choice but there's no right or wrong. It has left me with a lot of neuropathy, hopefully will go but could be permanent, but go with what feels right for you.

Hi, Never and Silkie, many thanks for your quick replies. Silkie: how did you persuade the team to do the onco test? My oncologist sympathises with me but said there’s no way the trust would pay for it ‘cos Nice guidelines say they won’t do it for node positive (mine was on one sentinel node but not on other nodes after axillary clearance). My gut says have the chemo as belt and braces, but the risks are high. Never: reassuring yr neighbour is still alive? I want to get a 2nd opinion but don’t want to delay chemotherapy (if I have it), as everything has been done so late for me (surgery 10 weeks after diagnosis).

Try You might qualify for the optima trial optimabreaststudy.com/ if you really want oncotype. It does not give you exact results though and will delay things a bit. Worth asking about though if you want oncotype. I was eligible.

I think our trust pays for oncotype between 3% and 5% benefit and I believe that is regardless of node involvement though not certain as I was 6%. I did a lot of research on different chemos, Predict model etc, different breast cancer types and started questioning the Predict model accuracy for my type of breast cancer (lobular) and the oncologist agreed to pay for oncotype even though was at 6% and gave me a choice of about 5 chemo regimes, as said I understood it very well and it was rare to have a patient that did. I was also very anxious and think they wanted me to feel happy with the choice. Also I previously had a suggested delay to surgery of 2-3 months and I complained and cc'd Chief Executive and it got moved to next day pre surgery that Friday surgery and I had a phone call from the Chief of Staff so it maybe the Chief Executive was watching. I got moved private for my second operation as well on NHS. But the oncotype did delay 3 weeks and gave pretty identical results to Predict, I liked having them but the delay was not ideal.

Try If you want to try an argue for the oncotype you could do an economic case on that the test costs £2k and if the results come out low you would not do chemo thus saving the trust far more in the cost of chemo.

If you are hormone positive and post menopause you could try saying the RXponder trial shows no benefit to chemo with 1 to 3 nodes positive www.vjoncology.com/rxponder-sparing-chemotherapy-in-post-menopausal-patients-with-node-positive-early-stage-breast-cancer/ and you would like the oncotype test to see if the results support that plus the economic case above.

I was lobular and there are some studies arguing chemo is not effective against lobular (though others arguing it is) and that is one of the grounds I got it on.

The optima trial is an alternative but don't get results and I think only 50% get the test in the trial and its a trial to reduce chemo so if you know you want it regardless best to just go ahead. And my trust it was prosigna rather than oncotype and they said to me prosigna gives a higher score than oncotype.

Try there are parallels between your situation and where I was with things, I was diagnosed with endometrial cancer for which the research is much more sparse than for breast cancer and studies around adjuvant treatment are contradictory, not necessarily showing any improvement in overall survival but improving progression free survival. I found new research that indicated that chemo wasn't necessarily recommended for my situation because I was only grade one, and so I was trying to discuss with my hospital not having it, but they couldn't seem to understand the nuances and just insisted the chemo was needed. It was really horrible position to be in, I got a second opinion from the Royal Marsden, which took ages, I was also worried about the delay after surgery, but people were telling me because it was slow growing it probably would make a huge amount of difference, although I did find research that indicated the earlier that you have chemo the better. The Royal Marsden confirmed that I was right, but also found something else on my pathology slides, so I have ended up having chemo. I'm not entirely happy about the decision, it was also partly because there was a lack of information because the hospital didn't do the sampling that they would've done if they had known what was in there, so some of it was because of the uncertainty. I had lots of friends who were saying they thought they wouldn't have chemo in the situation, but I actually really feel that it's such a different position to be in to be the person actually with cancer it did make me feel a bit isolated from people. Only other hand I am planning to refuse radiotherapy because there appears to only be a 1 to 2% benefit in addition to chemotherapy. My oncologist said that 5% was normally the cut-off point whether to recommend treatment. In the end I decided that I could mitigate the effects of chemo to some degree but if the cancer came back it would be much more difficult to deal with, and in fact I had my first one last week and I have had very little in the way of side effects, although of course that doesn't mean it'll go on that way. I just decided in the end that given all the uncertainty the only way I was going to get psychological peace really was to have the chemo. But I just think either decision is a crap to some degree, it was just a position that I was in. Really sorry you are in this position too.

Hi, guys, apologies for late response but I fell asleep! Thank you again for your great replies-r r appreciate it. Silkie: great info. Could I join Optima, get the test, see the result, then leave the trial? Sorry, not ethical, I know. Also, yes, could argue for the Onco test, but might not work on the cost basis, as even if score came back low, I might still want chemo. Plus, if I present the RXponder research, they might say that I don’t need the chemo so shouldn’t have it? Sierra: I’ve spoken to the Marsden about a 2nd opinion, and it could take 2-4 weeks, which r worries me, as I was diagnosed back in April (and they were sure from the mammogram, which had been done at the start of Feb, that it was cancer), so the delay is a big issue for me. What concerns me even more is that, for you, the Marsden discovered something more suspect, which is always a risk but would make me question everything the first hospital did.

I just read many medical journal papers until a better picture emerged that was much more specific to my situation rather than being advised on the basis of a broad category in which I was an outlier. The models are more sophisticated though with breast cancer so you may already have good information. The Royal Marsden took for weeks for me, though my hospital was delaying anyway so that made no difference in the end. I guess you need to know the efficacy of chemo as time goes on to work out how quickly you need to decide. I was keen to make the right decision rather than a quick decision, but I was incredibly anxious about the timescale even though at that stage I was expecting not to have chemo.

If you think you might want to have chemo in any case maybe you don't actually need more information, you just have to make a horrible decision. What specifically would stop you from having it? How much is your DH's view influencing you?

My hospital has been awful and I am going to make a complaint. I feel like I have to get a second opinion to make further decisions as the trust has all gone.

Sorry, I should have pointed out that my big concern is that they’ve suggested TC chemo, which is for low-risk patients. However, I could actually be high risk, hence the potential usefulness of the Onco test. If I’m high risk, the TC chemo won’t be potent enough. I do think it’s unethical to offer guesswork treatment to a patient-to take a gamble with their life-when the Onco test could be more definitive. Also, as the test is available to some bc patients, who would then get more specific treatment, I feel discriminated against and a second-class patient.

Thanks, Sierra. I’ve had a terrible experience with my large, London teaching hospital, hence the lack of trust/confidence in them. My nice oncologist is on hols, so I asked for a convo with another one. She was vile. When I explained my concerns, she just said, horribly: you want the stronger chemo, you can have it. She spoke to my like I was a naughty schoolgirl.

The oncotype was just used by my hospital to decide chemo or no chemo, not the regime and it was still their best guess afterwards, they said they do not know who will be in that 6% in my case (or 3.2%) who benefit from chemo otherwise they would just give chemo to them and not the others who will just get the side effects. I was in high risk for reoccurrence by oncotype but that did not alter the choice of chemo regime and high risk was 17% risk of reoccurance if I complete hormone therapy and chemo lowers that to around 11% if I can do hormone therapy, around 18% if I can't. I was given a choice as I was concerned about risks and it is most unusual to be offered a choice from what I have seen, not come across anyone else given a choice. If you feel strongly you want one chemo regime then maybe just ask for it but it is worth researching it further looking at the risks. TC was a choice offered to me and same strength as the one I had, the other alternative was same strength, and also 4 session equivalent. I went with weekly Pax as lower risk of bad side effects. I was offered 2 other regimes 1 which had been stopped due to heart problems and a couple of longer regimes which had a marginally higher success rate but more risk due to length of treatment and they advised they did not think it was worth it unless I really wanted to do that. But those were also same strength as TC but just for longer.

Hi, Silkie, thanks for taking the time to come back to me. The research u refer to is v interesting, but it involved women for whom the recurrence risk factor was known-and, of course, mine isn’t. I’ve been told that if I did have the Onco test and my score was high, I would have a different and longer treatment than the one offered to me for low risk patients. This is why I’m so frustrated-cos they could be giving me useless treatment.

Does anyone know which cycle days my immune system is lowest and I should avoid being out? My oncologist said it dips between day 5&7 and I shouldn’t go to Tesco etc but didn’t say when it was okay to go out again! I’d like to take my kids out for lunch next week but not sure if it’s ok.

Also, during the low times can I meet people outdoors? My 97 year old nans nursing home is having a garden party this afternoon and I’d like to see her but not sure if it’s a bad idea!

My hospital said up to day 7 but everything else seems to say day 7-10 or 7-14 if you Google Great. Are you feeling a bit better?

@AGreatUsername Day 10 is your lowest point in the cycle, but I just carried on as normal as much as I could. If you feel well enough to go to the garden party then go and see your Nan.

Good hand hygiene and no licking door knobs, should see you through.

I only had one admission for febrile neutropenia in my first FEC cycle and only stayed 1 night because I was so uncomfortable and didn't sleep at all so wanted to be in my own bed.

My hospital is terrible for advice, they didn't mention not to lick door knobs .

I'm going out and about reasonably normally, I turned down a trip to the theatre but have been to a couple of not crowded cafes and a work meeting (I checked first that no one has anything infectious). I'd definitely do something outdoors. I could live to regret it I guess but I'm otherwise at home alone a lot and I think I'd go mad!

My hospital was very laid back about doing things during chemo and radio and the only rule I was given was no hot tubs or saunas, be careful in swimming room changing rooms or avoid and wear factor 50 in sun for radio.

Other than that I think if you feel well enough then I would go for anything outside, I always took hand gel and I did if somewhere looked a bit busy say I was doing chemo then I was always put somewhere not busy when I did anything indoors. I never got anything though I was pretty careful and did not go out that much but did a boat trip (avoided the very crowded ones), walked round an island, had meals inside but making sure not in a crowded place and used hand gel before eating, went to outside theatre, stayed in B&Bs, swam 4 days after radiotherapy outside pool going changed and ensuring no broken skin. I am a quite obsessive user of hand gel but as long as you are sensible should be fine. And if you say (obviously may not be appropriate if kids there) then people are very willing to help generally find you somewhere suitable to be. I did do all meetings virtually though that is partly as its a good excuse as well as for covid avoidance. I was glad to have chemo in the better weather so easy to do things outdoors. Had to be a bit careful with eating as well sometimes like avoid anything creamy and before a long car journey I would take ondansetron. But you will quickly find what works for you. Swimming best to ask you team, mine were laid back as long as no open wounds but others are not and may be case by case on that.

Currently in a bit of a panic as Niraparib stopped 2 weeks ago because I mentioned Id been a bit breathless, but actually this was while out walking in that dreadful heat, and Ive been fine since. Ive got a low heart ejection fraction so have had to have an echo, which I organised and paid for myself as too long a waiting list for NHS scan. Waiting to see what the oncologist says if I can carry on, dont know what Ill do if its No. Honestly the constant unremitting worry about this disease is awful. How do we do it !

Great thanks all! I didn’t know how careful I needed to be. I did go to the supermarket yesterday but wore a mask. I’ll allow myself to go out then! I am planning to return part time to work in October but one of my reasonable adjustment requests is to not have to attend the office (a few thousand people, few hundred on each floor). It’s a relief really as I don’t want to spend the next 5 months avoiding doing anything nice!

Well you can tell the state Im in, Ive already posted earlier about thisand totally forgot !

Good afternoon, I used to be a regular on here back in 2013 / 2014. Had breast cancer.

Then in June I developed a cough, then got Covid. Upshot is ended up in hospital with a partially collapsed lung due to fluid and also discovered I have cancer in my liver, lungs and bones.

so here we go again

They are just trying to get infection under control and awaiting liver biopsy and then I will get a treatment plan.

I am trying to remain upbeat. But I cannot believe I am in this position again

@foofooyeah I am so sorry you find yourself back here. You must feel so many things. How are you coping with it all?

Hope you can get your treatment restarted Thereisonlyone

Welcome FooFooYeah but so sorry you have to rejoin us with such news.

I have finished 2 surgeries, chemo and radio now and just 10 years hormone therapy and reconstruction surgery to go. I still have not received hormone tablets though can't say I am massively keen to start them. I thought appointments would calm down now but nope have 4 for September already and 1 for November and they said 1 for December will come through. They did say can go via breast cancer nurses for 5 years as well rather than GP which is great.