Cancer Support Thread 84 - gently crunching our way into autumn

[mowly77]

New thread as old one about to be full. As those who have been around far longer than me have said: Welcome. Pull up a chair, help yourself to a biscuit, a large gin, or a detox tea. Or all three. This is a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc., vent, scream, or discuss life in general.

Please feel free to join for support 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.

@TopOfTheCliff - that's crap on the cancer rollercoaster as it all seemed to be going well. Why do you think you have a third issue? Do you mean the calcification is separate from the other two BCs? When are to expecting your private genetic results?

@EachandEveryone - still uncertain for you too, I was wondering how you were doing today, I was expecting you to have an answer. Here's some stuff about viruses and cancer and which they're linked to www.canceractive.com/article/review-parasies-viruses-bacteria-yeasts-and-cancer How long ago was your hysterectomy? Could that mean your primary cancer has actually already gone? Very puzzling.

I am still feeling a little adrift after my chemo abruptly came to an end. My DM had another emergency admission to hospital this week though, so I am back into trying to sort out what's going on with her. I'm away for a couple of days, though I was in A&E with her until midnight on Monday, they can't really seem to work out what's wrong with her but she's very frail. I just want a bit of headspace to get my life back together without constant crises.

Rollercoaster is a good description @SierraSapphire From what I dimly understood today, among all the good news and congratulations on a good response to treatment, there is another “area of concern” with calcification very close to the tumour marker. They are planning to remove both with their melon ball scooper during the wide local excision and review things after the pathology is back.
I posted my DNA saliva sample off to California yesterday so I guess I will get the genetics result sometime in the New Year. I don’t know what the NHS testing consists of. I don’t know whether to be worried or relieved now. I will try to get hold of my BCN tomorrow.
@EachandEveryone I am sorry you don’t have a definitive answer yet. It’s all very mind boggling isn’t it? Sending hugs
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Top
i was ready to shout Mazel Tov too! (Jewish heritage, people do look at me askance sometimes) But there is always a cancer spanner in the works.

I’ve always thought of it as the cancer rollercoaster. You’ll need time to get your head round all the extra stuff they’ve thrown at you.

Interesting that you could send your spit off to California for just £350 though. So is that totally private and not NHS funded?

I have a faulty BRCA2 gene & my Dad & (technically half) siblings have never been tested as they all live in the US & I always presumed cost extortionate. Plus it’s almost certain to me it comes from my mother’s side as she died at age 35 in 1985, so pre-genetic testing, but too much of a coincidence that I also first had BC age 36. But I can’t work out where the mutation comes from. Common with Ashkenazi Jewish heritage but that’s all on my mum’s side and my maternal grandma lived to 80, no cancer issues at all. Very unusual if she had the gene and passed it to my mother. So my maternal grandfather could have, but he wasn’t Jewish … wow that’s very boring for everyone sorry. Unless you happen to be trying to work out where any genetic cancer comes from in your family. My younger sister is seriously thinking about having kids and I do think she should get tested, belt and braces. But I had just assumed it was a massive cost in the US.

I had genetic testing as a 30% of the type of ovarian cancer. I had is BRCA related, my consultant said he thinks my test was negative, I've not had a definitive answer, but I presume it was negative otherwise I would've heard something, I do need to check with him definitively though. I was worried that I was going to be positive because although there was no cancer in my immediate family, parents or grandparents, my cousin did die of breast cancer in her early 30s, and my aunt had ovarian cancer though in her 80s. When I did some research into it though there did seem to be plenty of women who didn't have an immediate relative with cancer and was surprised to find themselves positive. I guess it depends whether it's BRCA1 or BRCA2, some of the percentages are lower than others, and it's possible that it's just become more prevalent because we don't eat such a good diet as our predecessors, or we are much more sedentary, I do quite a lot of exercise, but I don't think that makes up for all the sitting that I do in a knowledge based job that's increasingly done from home. There's also always the possibility of being the first mutation, I went down that rabbit hole with a neurological condition that my dad had that could be genetic or could be idiopathic, no other history of it in the family, but could he have been the first mutation? I decided his probably was idiopathic from the characteristics of it, but not before convincing myself for a few months that I was about to die a horrible death, perimenopausal health anxiety just after my dad died that I wonder whether it contributed to my cancer. I am now less anxious with the cancer than I was with an imaginary illness!

I'm still up north from visiting my daughter, I am going to sit in a café with my laptop and work for a while, and then possibly have a last wander round the shops before I head home to visit my mum in hospital.

@EachandEveryone I am sorry you still don’t have a definitive answer. I wonder where your primary could be hiding. How are you doing? Are they hoping to rush through the MRI before starting treatment?

The NHS genetic testing requirements are weird - I wasnt eligible because I had no family members with cancer. Only got tested when went private and blood went off to California and came back as a surprise! Family are all in the US and my parents were both tested on Medicare (no cost to them) once they had my documentation. Then both of my siblings were tested - my sister via her insurance (no direct cost to her) and my brother via his cancer center at Stanford (he had head and neck 6 months after me) as part of their diagnostic panel. In fact, reading US-based forums, BRCA testing seems to be automatic in the US at this point in the diagnostic phase, regardless of potential stage, and insurers will pay for it automatically. So you could be DCIS only and still get a test even though the percentages are pretty low to be one or the other.

My father is now on some sort of crusade to find every last family member in a three county area and recently dug up some third cousin who has prostate cancer and whose sister died of breast recently. So I think the whole 'immediate and first line family' is a bit misleading, but its the family most people are familiar with I suppose. Dad's family originated in an area of Germany with a high Ashkenazi Jewish population (several centuries ago) and we have often been mistaken (especially my brother) for being Jewish, though the family has always been Lutheran (well, now atheist). Its all very interesting to think about how genes have been passed down through generations, especially if immigration is involved, and where/how it may have originated and the impact of historic social and economic changes.

@SierraSapphire I was walking almost 3 hours a day and swimming a few times a week with limited alcohol and eating relatively healthy just before diagnosis and it didn't seem to matter :) Hell, Steve Jobs probably had some sort of macro probiotic diet cooked for him daily and he still died of prostate cancer so while I think diet and exercise can play a part, no reason to beat yourself up for things you cant control! In my case I think it was due to blunt force trauma to that breast and a high level of stress but who knows. It happened and we just have to deal with it.

Living with uncertainty seems to be part of the cancer experience, whether it's wondering about genetics etc, or diagnostic uncertainty or worrying about recurrence. It's a hard thing to get your head around.

@TopOfTheCliff - do you have a date for your surgery yet? Hope it and the pathology results are not too long a wait away.

@EachandEveryone - sorry to hear you have more scans and waiting to go through, am only the outline of a plan for treatment.

@dotty2 I finish chemotherapy next week and will have surgery six weeks later. That fits well with my Christmas and January plans.

@mowly77 I looked into private DNA testing in the UK and it was £1400 including genetic counselling. Somebody suggested Color.com in the US which is $250 plus $100 for the courier service. They just take a family and personal health history and you send a spit sample. They cover all known cancer genes but also heart disease which is helpful as both my parents and both brothers have (or had) atrial fibrillation. I am doing this for my sister and daughters and had already decided it was worth the money.

Now I am processing what I think happened yesterday I am feeling better but I need to confirm it with the BCNs and my oncologist. It does seem likely they are investigating me for a patch of DCIS but the surgeon could have simply explained that!

@SierraSapphire hope the roads are safe for your trip. It is bitter out today! And hope DM is in good order. My MIL is recovering brilliantly from her hip fracture. We are going to get FIL home after Christmas I think.

Regards to all
Top x

A mini milestone today. I have just been for my first post surgery run, so first for about 3 months. Not very far, and very much not fast, but it felt good. Hoping to get another one in before my next chemo next week.

@dotty2 that's a fantastic milestone, I haven't run since my mastectomy in October and I really miss it. It was the best way I found to de-stress myself and now I can run I miss it. Last Christmas day my local park run went ahead and it was such fun, quite tricky to run with fairy lights wrapped around you 🤣 did you need to get the permission from the chemo team first? I've only had my first chemo session this week but it would be nice to know that it's still possible on chemo

@fudgecat I have gymed all the way through chemo - cardio and weights. I did take it easy the week after, I was on a three-week cycle - I mostly walked and exercise biked at home - then back to normal for weeks 2 and 3. I read somewhere that if you exercise through chemo it protects your respiratory function.

I didn't explicitly ask the oncologist, but mentioned I was exercising and he didn't bat an eyelid (had just been walking previously, but doing quite a lot of miles). But I did ask the physio about it - I had several appointments with a physio attached to the breast unit to help with cording after my node clearance. She said that exercise during chemo is encouraged, as long as you don't exercise for 24 hours after the treatment, and that a good rule of thumb is that you should aim to maintain the level of fitness you've got, but shouldn't expect to push yourself to get fitter. I guess there's a bit of ambiguity there - but I took it to mean the level of fitness I had pre-surgery.

Well done Dotty 💪🏻 that’s great!

@fudgecat after my first round of EC chemo (adjuvant, I’ve had 2 x surgeries and this is apparently zapping what may or may not be there as I had lymph node involvement) I have been on two bike rides, one 15 miles a week after chemo and 26 miles on Sunday just gone. I also ran the five miles to the hospital to have my picc line put in and did 5k before my second cycle yesterday (I’m every two weeks). I wasn’t expecting to be able to do much more than get the dogs out for a walk (with a 8kg baby strapped to my front…) so I was surprised but pleased as it made me feel so much more positive. Now I’m alternating between my bed and the loo feeling rotten again but hoping this cycle will go like the last one did and I’ll be feeling more normal again in a week. Consultant and nurses were all really really positive about exercise and said my blood results were excellent so I should keep it up if I can.

Wow, impressed with the amount of exercise you’re all doing! I found, especially on FEC that I had literally no energy for at least the first week, struggled even to walk round the block. By week 3, I was able to go out on my bike and do about 10 miles, but only really pootling along. It definitely helped though, both physically and psychologically.

I'm here on the thread that nobody wants to be on. But a bit worried to actually post

So I had /have stage 2 cervical cancer and have undergone 25 radio, 4 chemo (they decided I didn't need the 5th apparently) and 4 internal radiation.

I have had the visible all clear and they do MRI's and CT's with the internal radiotherapy

But what am I actually supposed to do now? Oncologist appointment is in Feb but I finished treatment 9 weeks ago.

Goodness me, I am shattered! I don’t think it’s the treatment, rather the journey which is a five to seven hour round trip depending on traffic. However, I am waking in the night with severe reflux and being a bit sick with it. Nothing serious, but enough to be concerned considering I’m not eating a huge amount. Anyone have any experience?

Hi @JlL2013 i'm at that stage too, finished chemo about a month ago, and not do a check up until February or March. I had stage 3A endometrial and stage 1A ovarian. I have been getting support privately around diet, supplements, and other things, and so will have that reviewed, looking at how I can rebuild my body again after surgery and chemo, and also looking at getting some coaching for work and more generally managing stress and focusing more on myself instead of others. It is a bit weird though that you just stop quite abruptly with the NHS. I also didn't have my last chemo cycle, which I'm fine with, but I think it doesn't help with a sense of closure, I felt quite disorientated just in having my plans changed!

Welcome @JlL2013 to the thread nobody wants to join. When I was first diagnosed the nurses kept telling me the hardest time psychologically would be when treatment finished. I didn’t understand why they would say that. But when I finished radiotherapy and walked blinking out of the doors into the sunshine I felt totally abandoned. I remember buying a bag of Minstrels in the hospital shop and driving home with Paolo Nutini on the stereo singing at the top of my voice and crying. After all the effort of keeping level, attending all the appointments and holding in all the fear and uncertainty, there is nothing to contain you. For me it was a prompt to start a fitness campaign and get back my strength and sense of adventure. Sadly a year on I am back down in the trenches battling cancer no 2 but looking forward to that day again.
Do you have a job to go back to? Family to run around after? Or like me just a ramshackle Victorian ruin to maintain and an allotment to tame? My DC are now looking after me which is a bonus! I had considered joining Extinction Rebellion and getting arrested a few times but decided I’m not motivated enough.

@Gilead there is good medication for reflux. Gaviscon forms a nice plug to stop the acid going upwards. What do the nurses advise? It sounds utterly exhausting having to travel for that long. How many more trips are there?

Greetings all. I’m sitting by a log fire with a hot water bottle eyeing the thermometer that says 11 degrees in the living room and laughing to myself. It was below 10 degrees from April till June when we sailed to Scotland and we didn’t fuss about it. Keep warm!
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@TopOfTheCliff , I have lansoprazole, usually in the morning, but may well add an evening dose and ha is on. I was going to ask about it today but had to cancel my appointment as I’m snowed in. Poor ambulance man came tot
pick me up, got to the top of the drive and slid back down! I’m in a wheelchair so by mutual agreement we abandoned the schedule. Nurse will just add one extra appointment at the end of the schedule.

Hey lovelies, welcome to newbies and a big squeeze. Had my symmetry surgery yesterday, all went well but it's looking a bit red today so keeping an eye on it. Loving being even again.

Love to all, will catch up on this thread later.

HC x

Had my MRI today in the car park. It was very nippy 🙂. Hopefully this will be the one that reveals the little git thats caused all this. I swear I've developed a right eye twitch since this all started. MRI was liver and pelvic. Im taking a guess that its going to be gynae and god knows Ill be upset if its the ovary they left in after my full hysterectomy.

Hi everyone, I hope it’s okay to post here. I am 36 and have just given birth 2 month ago to a gorgeous and very long awaited baby (5 years in making) and currently facing a very likely and very scary cancer diagnosis.

I have had some strange symptoms 1,5 year ago with tingling back and slight problems in bladder control. I have went to gp, who ordered a full spine mri. Which was clear. I sighed a relief and forgot about it and went on to concentrate on ivf.

Fast forward to now, after birth I noticed how tired I am and that I lost a lot of weight, when everyone else seems to be putting it on. Then one day went to bed, woke up with pain in my back to discover a lump on my pelvic bone at the back. Been to see gp and they are worried. My weight loss compared to pre-pregnancy weight is 10 kilos and apparently I had a very worrying and sudden anemia in my bloods in august -
dont know why it has not been picked up then…

cljnkcal articles suggest that about 70% of bone pelvic masses are malignant and it is so big… about 5 cm in diameter. I am scared. So scared I feel so nauseous…. It is so hard to look after the newborn let alone face a devastating diagnosis. I don’t know how to get through this. My heart is in pieces

@Anxiouslikenoneother so sorry to read this. No useful insights- except do contact Macmillan if you would like to talk to someone, stay away from Google, and vent away here.

Hey @HumphreysCorner great to see you here. Congratulations on the symmetry. May it all go smoothly! Let everybody else run around and organise Christmas for you x

@Anxiouslikenoneother welcome! And congratulations on your new baby. The waiting and not knowing is actually the worst part of all this. I didn’t believe that when I was told it but it was true. Try to keep busy with mindless tasks. Write your cards, wrap up presents, bake and freeze stuff. There are some Apps like Calm and Headspace which can help with the terror especially at night. Once you have seen the consultant (and had the scans and biopsies and got results and know what you are dealing with and what the plan is) you will feel so much better. Meanwhile feel free to rant and rave all you like. We understand.

Today I finally baked lebcuchen which I have been meaning to do for a week but am too lazy to get motivated. I’m moving at snails pace now but the last chemo is on Tuesday. Hopefully after that I will start to speed up again. I’m quite happy watching TV and keeping warm. It’s like pretending to be 90, except that the 90 year olds I know are very energetic.

Regards to all
Top x

@Anxiouslikenoneother I’m sorry you find yourself here. I’m 37 and was diagnosed with breast cancer when my baby was 4 months old so I know how hard it is trying to keep it together when you’re still getting over birth and adjusting to your new life. Honestly, this waiting bit at first is truly the worst bit of all of it. I thought it would be chemo as I was petrified of that but actually now I’m in it, it’s true what everyone says - nothing is worse than the waiting game and being in limbo, even chemo. Take each day as it comes, try to keep busy, use macmillan if you need to talk to someone and for the love of everything good in the world do NOT Google. Google is bad news bears. ❤️