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.

@AGreatUsername

Im really sorry to read of your diagnosis. I can recall that before I knew I had mucinous ovarian cancer I came to the conclusion I had low grade and I can remember feeling comforted by the words low grade. I felt even better a few weeks later when I was told I had stage 1a mucinous. Wow, I thought, I really have gotten away with this. But then I read up on it and realized I hadn’t because of how rare it is and there really not being a treatment option for it. Yes they can have a go with something but it really is just that - having a go. Currently I’m 4 months away from going to a 10 percent chance instead of the current 60 per cent chance.

It will all be such a horrible shock to you but believe it or not after some time you will settle down to living with the horrors of it all and it will scare you less. In fact I can’t believe I was just able to say that but it’s true.

Shouting at your husband. It’s ok. It’s also ok to say that right now you need it to be all about you for the time being. That you need him/your family to support you and for them to find their support from others even just for a wee while. It’s what I was told but unfortunately I was so loopy at the time my children knew it was to be all about me, that it couldn’t be anything else so they leant on each other.

Figures, projections, statistics - todays figures are probably a good few years old and who knows what we can all be learning from a new study this time next year. Treatment options are also improving and whilst we may be against the ropes right now we’re certainly not out for the count.

Do whatever you have to do to get over the next few weeks and if you feel you need a bit of medicinal help don’t think it must mean you’re weak, or not coping, or not brave or any of the other shite people say about those who’ve had a cancer diagnosis. See your Dr and remember you’re human and it’s ok to feel bloody terrified.

Thanks Ldn Glad it wasn't cancer and thanks for your kind words.

Sorry your DH is crying too Great Its so hard. I remember my DH was really strong with mine and positive but in denial tbh and talking about us retiring together and I found that really upsetting. I think when you have been given bad news however your DH reacts can be upsetting. I found the best thing was to tell him not to talk about that but just listen but you will find your way through together, its a massive shock for both of you. I would explain to him how best he can support you. I think we also just hugged and cried together, its such rubbish news.

I don't know re odds as its a different cancer but breast cancer they use a model called Predict Breast which is online and gives precise results for each result, don't know if there is ovarian equivalent. By its nature as its 10 year data its out of date data and survival rates are better now but gives a rough idea. For breast 5 lymph nodes involved is worse than one but some people have much more like 16 involved out of 16, its varies how many you have. Its worth phoning your clinic and asking if they can tell you anymore re survival. If you have the money I would also consider a private appointment with an oncologist specialising in ovarian cancer to see what they advise if you can't get answers from NHS or for another expert. You can also insist on a second opinion from another NHS hospital which could be a leading one for your cancer and see what they advise. It is really worth getting the best advice you can though quickly so treatment isn't delayed. In breast stage 3 is curable, is stage 4 which isn't, its only treatable, hopefully someone can advise better who knows about ovarian, I suspect its the same and can be cured, its reoccurrence at stage 4 which is the main risk with breast. At this stage I went on sites specialising in my type of breast cancer, its always best to get advise from oncologists but sometimes others who have same type have had advice, always double check it. The chemo I had was not to reduce the cancer but to prevent reoccurrence.

I would ask things like is it curable, what are the chances they can cure it. How much benefit would chemotherapy add, how much risk, how would reoccurance change. What chemo would it be, how long etc.

@AGreatUsername its all a bit overwhelming right now and its so so easy to sit down and just spin out into catastrophe and wallow in it. In a way I think its actually healthy to get all that negativity and worry out of the system, however long it takes, and shed the bulk of the tears before pulling it together and getting on with it. Not real fair that your H seems to be doing the bulk of this though!

Pro tip: try and stay in the now and not plan/think too much in the future while everyone is coming to terms with the situation. Just take it day by day. Eventually you will get to a point where you ARE able to consider the future (like beyond 6 months) and get confidence back that the rug wont be pulled out from under you again. And if you get to that point and then find yourself starting to spin out into anxiety about the future again (all sorts of things can set this off - a comment, something you read, etc), re-centre on the here and now.

@AGreatUsername I'm a long time lurker but thought I'd wave to you as I had Stage 3C, grade 1 ovarian cancer. The stats are depressing reading, but as others have said many are based on older information. I'm now 3 years post treatment with no evidence of disease. Still a long way to go, I'm reviewed every 6 months, but I try and concentrate on my news rather than statistics. To take things day by day really is the best advice. If I can answer any questions for you, please feel free to ask. Wishing you all the best.

@TopOfTheCliff congratulations on your great and exciting adventure! So brilliant and you must feel so proud of yourself.

You are absolutely right it should be a joint process with my oncologist but she’s been very, hmm, unilateral from the off. She told me she wouldn’t consider giving me chemo every week, for example, although the Marsden said they would. She also wouldn’t increase my dose above 75% before (fair I suppose given the side effects) & now she’s put it down to 60% without consulting me. Definitely don’t want that so I’m prepared that she’s going to argue with me. I think at the end of the day, I’m the patient, it’s my life and it should ultimately be my decision.

@AGreatUsername very sorry to hear your diagnosis. Everyone has given you such good advice I can’t really add to
it. I do agree take it one day at a time. And it will take a lot of time to get used to. I was diagnosed stage 4 metastatic breast cancer in March and I thought exactly the same as you — my life was going to be all about this disease from now on and I was going to feel dreadful from the treatment and then I would die anyway. It’s only been 4 months and a lot of days I still think like that. But many days I don’t and whilst I am not planning massively ahead I am thinking about small milestones like I’m going away with my little daughter this weekend; she starts school in September. I am
making time to do things I enjoy when I feel like I can. There are other forums and message boards etc and I have been reassured that after a shock diagnosis it’s a grieving process: for the life you thought you were going to have; for the person you were pre-cancer. I can understand that. I‘m angry a lot of the time too and that’s fine and normal imo. Oh and my partner has been bloody useless: it’s all about him, apparently. We’re going to counselling tomorrow. Not suggesting yours is as bad but at some point he’s got to accept you come first and he must find healthy and acceptable ways to deal with his emotions and fear and upset (all valid of course but yours is different and I do think worse) and talk to other people. Counselling is available via Macmillan or your local hospice usually - the latter for family too if he wants to go that route. Mine is; I’m doing zoom via Macmillan but will
switch to a hospital counsellor in person as soon as I can get in. Long waiting list.

@AGreatUsername I'm so sorry to hear about your results and can relate to your feelings, I was the same when I was diagnosed in December 2020. I felt 'that's it, I'm going to die, so what's the point of all of this anyway' but now I'm a year after my major surgery and first line chemo and currently have been on maintenance oral chemo for 9 months I feel the black hole of doom isn't with my all the time as it was. It ramps up every month for my reviews on my CA125 and around my scans I am a basket case but in between I can 'push it away' a bit. You need to be the priority now, shouting at your DH is normal, you need to be the focus. I would recommend ringing Macmillan and talking to one of the nurses there, just letting it out to someone not closely involved with you helps, they understand how hard it is and you can have as long on the phone as you like. Also, please contact your GP to get something to calm you down if you need to. I had a massive panic attack last week as it was my monthly review and had my prescription for beta blockers increased by my GP for times like this.

I took me 4 months to pluck up the courage to ask my staging, I needed this long to ask. I have stage 3c OC but high grade endometrial and have been told I'm treatable but not curable. I don't know about low grade though. I would prepare the same questions as @Silkierabbit suggests, great advice. Personally I don't want to know my prognosis. As I'm so. so anxious, I am only able to focus on the thing I'm currently on with my diagnosis, and find this works for me. Everyone is different in this regard though, it's very personal. Sending you the biggest hug, what you're going through is so painful and horrible Xxx

@Lndnmummy so pleased to hear that you got the all clear!

@TopOfTheCliff you must be so proud of your adventure. I love sailing and would love to do this one day! What an amazing challenge.

@AGreatUsername I am a week or so behind you expecting my staging information some time this week, and it's weird, I thought I'd be more anxious but it's almost like my brain can't process any more so it's just opted out. It's been a while since my initial diagnosis (14 weeks) and I feel more able to cope day to day than in the beginning, but I can't let myself think about the future or about the results, just focusing on recovery from surgery.

Thank you all so much for your kind words, you’ve all said things that have made me feel comforted and as if I’m with people who understand, which I know you all do.

I’m really not in a good place today. It’s my birthday and the most sad and miserable one ever. DH and I had a good few hours crying and talking in the early hours, then went for a lunch time birthday drink and just cried in the beer garden (I’m sure all the other people thought we were drunkards but it really was only one drink!). I spoke to my CNS and she said they removed 5 lymph nodes on both sides of my abdomen, it was in all 5 on the left and 3/5 on the right. Why do they never tell you anything? The dr yesterday said 5 had been found with cancer, she didn’t mention 8! She also said it’s likely I’m treatable but not curable due to this so that is brilliant. I’m 37 today. I don’t feel old enough for this shit. Which is silly. I know even younger people have it, cancer doesn’t discriminate.

I am debating going on holiday next week with no insurance, I can’t get anyone to cover me it seems, even the specialists, so I am tempted to get cover for DH and the kids and sod me. It’d only be a few nights on Majorca. I need this. I need some nice days to hold onto for the next few months.

@Confusedasnormal I am sending you all of the good luck for your results!

@AGreatUsername , I have nothing helpful to say, so sorry for your situation. 37 is far too young. Any age is rubbish. The whole thing is rubbish. I am so sorry. Thinking of you.

@AGreatUsername you should definitely go away.

Have you tried the post office for your insurance? A relative who had leukaemia many years ago recommended them, and they are cheaper than the specialists by miles, if you speak to them you can apparently get cover that excludes the cancer or complications but would still cover something unrelated.

Thanks for your good wishes, I h hope you manage to get away and have a fabulous few days.

Oh, and I’m not going to say Happy Birthday, but Birthday greetings to you.

So sorry Great and thinking of you on your birthday. Hope you can get away. And if it was you who wanted the Maine Coon kitten definitely get one but after the holiday as they need full time attention.

These are some of the companies mentioned in my other post (I’m sorry I got the tone wrong). There’s a few more in the thread and I’ll copy and paste them.

insure cancer
able 2 travel

pulse insurance

all clear
good 2 go
manor insurance
freedom Travel insurance

enable travel insurance
endsleigh

stay sure is the other one

@AGreatUsername @Fantasea I’ve never asked for my prognosis either it’s information I can’t handle frankly and also they don’t really know, no-one can know, it depends how you respond to treatment. I’ll know when I need to.
I know I’m not curable as stage 4 but I’m treatable too as the chemo is working and I’ll find out how much exactly and what the plan is next week. It’s only been a few months for me but I agree that the black hole of doom does lift sometimes and I’m sure as time goes on it will lift more. Scanxiety is a real thing however so I’ve accepted that every three months I’ll be a basket case.

Birthday greetings too, some birthdays are just awful. Mine was a month after diagnosis, mine and DP are three days apart, and we all had covid too so that was one not to remember. Also definitely go away if you can, it’s a good chance before you start any treatment.

Does anyone have pleural effusion?

It’s really bad (tightness, breathlessness) at the moment and I wondered if the hot weather is having an impact..?

I don't have pleural effusion and would seek medical advice on that MrsWooster but have had a few days with really bad breathlessness recently. I am not sure if it was hayfever / allergic asthma, anti-histamines helped a bit or a coming off chemo / steroids thing. Pollen count is really bad atm, other thing is lots of covid around at the moment which can cause breathlessness but I would phone hospital / doctors and see what they advise.

Thanks, Silkie
I was in hospital on Friday getting X-rayed to check it’s within reasonable limits so reassured-more wondering if it is something genuinely frightening /end stage stuff, or whether it’s likely to be a passing thing. I’ll find out when the weather breaks on Wednesday!

I really hope its just a temporary thing. Heat can certainly make most people feel ill. If you have a phone number for your team that works today would be tempted to give it a call to see if they can do anything, or 111 if not to see if anyone medical has any suggestions.

Other than that being in a more upright position in bed is better than lying down for breathing, if you are in bed can help a bit, and maybe an anti-histamine if there is any chance at all could be allergies. And anything to keep cool, I even lie in a bath of cold water sometimes. But if you really feel very unwell esp if no-one to help would consider getting admitted to hospital again.

Macmillan also have cancer specialist nurses who are there today, I think your team is best if that's an option but I found one of these was quite helpful about chemo. www.macmillan.org.uk/cancer-information-and-support/get-help/macmillan-services/cancer-information-nurse-specialist

Hi, ladies, apologies for dipping in and out and not asking after/replying to other posters. I’ve been feeling really, really low since the results of my lumpectomy changed my diagnosis for the worse. I’ve got my axilla clearance on Tuesday-hoping against hope that it doesn’t get cancelled cos of adverse weather. Absolutely terror struck about the op-surgeon thinks he’ll take all three axilla levels. Didn’t ask why ALL levels, as I don’t want to know. Plus, haven’t researched how this might affect my arm mobility, as I don’t want to know that either! I keep thinking about what stage I’ll move to if the cancer has spread to the axilla. I inadvertently discovered that my type of cancer-spiculate IDC plus DCIS-is a risk for spread to the axilla. The clinical ultrasound of the underarm didn’t show any cancer but it’s only 75 pc accurate. Plus, they’ve got everything else wrong so far, so why not this??? I also discovered that my type of cancer is peculiar to women with BMIs over 30, so I’ve only got myself to blame. That’s been a particularly hard pill to swallow. I’d appreciate any advice or support, if anyone has the time. Know that you all have yr own issues, so apologies for being so self-indulgent. It’s hard to see any light at the end of the tunnell…

Hi @Tryhardermum I couldn’t read your post and not reply. Firstly stop blaming yourself for your cancer, it’s really not your fault! If it was true being obese caused it then it would be really common and not rare! Even skinny vegan teetotallers get cancer. Stop beating yourself up!

I had a lymph node in my axillary that was bigger than my original tumour. As a result I had a total axillary clearance and they took thirty nodes out. I have a numb armpit and a very slightly swollen arm and side but I’m fit and well with normal mobility and go to the gym and lift quite heavy weights in line with lymphoedema prevention advice.
Once you have had surgery they will plan what more treatment you need. It may be chemotherapy or radiation but it will be to reduce the risk of recurrence as low as possible. I took everything they offered and although it was tough to get through it was worth it for the peace of mind.
You sound like you are still in shock at the moment. Are you practising mindfulness or doing any relaxation or yoga? I found that really good for controlling the anxiety symptoms and helping me sleep and eat while I was waiting to find out the plan.
Keep talking to us. Somebody on here has almost certainly been where you are and can reassure you it will be okay and you will get through this. All of our situations are different but we share a lot of the emotions.
Love to all
Top

Hi, TopOfTheCliff, thank you for posting so quickly and your reassuring words, particularly about the axilla clearance not causing you too many problems. Yoga/mindfulness doesn’t r work for me-I’ve been having hypnotherapy, but my anxiety hasn’t allowed me to relax or be in the moment. I’ve never been able to relax fully or switch off-I’m highly strung by nature. I’ve been floored by the change in diagnosis after reassurance from the surgeon and the radiologist that they were v confident the lumpectomy would confirm the original diagnosis. It’s made me question everything they say and do now. I’m so worried I’ll end up an incurable stage 3c or stage 4. Keep crying all the time and I tell my husband I’m going shopping just so I can drive to a shaded, quiet road in the area and weep in secret. I can’t burden him too much, as he needs to be strong for our children and to be able to continue to work -I was freelance so I don’t get sick pay. Sorry for being such a Debbie downer, but hard to pick myself up and battle on!! Thank you, again.