Cancer Support thread 86 - Stay Positive

[LemonDrizzle10]

New thread as other one nearly full.

@SummerCycling I hear you on the dietary advice. I get it that for many people a cancer diagnosis often influences them to change their eating habits, to eating organic food, more veggies etc. Also everyone assumes that ‘sick’ people want to eat soup. I’ve had bowel cancer and had my colon removed and I am on a no fibre diet - protein, carbs and minimal fruit and veg. I’ve also become lactose intolerant. I have regular consultations with a dietitian to make sure I’m eating the right things. Soup is not on the list - too much fluid and not enough calories But apparently my friends all know better! They just can’t get their head around me not wanting them to deliver homemade soup! Even after explaining it again I found myself in the middle of another bloody text conversation about soup with them trying to devise a recipe that would meet my requirements. I don’t want soup, how hard is that to understand?

@Remaker

It's weird isn't it, how some people get the idea that one simple food can treat / prevent cancer or that a cancer patient can / should eat a particular thing.

It's the unwanted advice that frustrates me. I feel as though they are saying I got my cancer from a poor diet, if I'd only followed their advice I wouldn't have got it. It's such an enormous oversimplification, incorrect, misleading and sometimes downright dangerous ( like the soup in your post).

I knew someone who died because she followed weird advice like hugging trees. The doctors begged her to try conventional treatment, but she refused because she believed in the alternative crap. She originally had a curable early cancer. Two very young children. That was about 20 years ago now but it's something I'll never forget and wish those idiots knew about when they say "all you need is to eat garlic" or whatever.

I have to say I've been lucky with my friends so far, they have all asked me about food, not once have they advised. It's people I don't really know who have advised me - electrician, hairdresser (not mine, I went bald at the beginning of the treatment last summer), etc

@Makemineadecafplease

Hi, I have replied xxx

But we can discuss it here, I think it could be interesting to compare our experience / share advice about Herceptin for other HER2 patients (stomach, breast, oesophagus etc cancer )

@FangedFrisbee

My hospital keeps saying "we don't stage"

Mmm, not so sure... why did my first CT scan state at the top the reasons for the scan included "staging" then?

My hospital doesn't have support groups. That's an awful way to find out, it should have been done so differently. I've heard similar from other people here too, unfortunately, like a lady who had metastases in 3 organs (some years after treatment for the primary) being told her treatment plan before even knowing she had cancer again. GP had only suspected a virus and that's what she'd thought she had. She felt utterly traumatised by it.

Immunotherapy is working very well for her now, and I hope it does for you too. x

Thanks all

My oncologist is very positive about how good immunotherapy is and how it's not a death sentence. I can also have some targeted therapy because my cancer is genetic.

@SummerCycling just to chip in on the Herceptin side effects I had 18 doses of Herceptin in 2020/21 and although I was breathless and unfit my heart Ejection Fraction readings stayed stable. Once I was off treatment I quickly recovered and actually cycled a 200km Audax soon afterwards. I think the chances of heart failure are quite low and if they spot it they treat it with Ace inhibitor drugs.

I am having a quick rest between family events. We had my Aunts funeral on Friday and DDs wedding party yesterday. I did far too much and my fingers have all peeled raw. This morning while moving boats around I got a big splinter in my bum which DH is looking forward to excavating later. I’m resting up now but tomorrow is MILs 90th birthday so more partying. I don’t think my family believe me when I tell them I am still on chemo and not my usual self. It’s so frustrating having so little energy and my hand and feet hurt a lot.

@FangedFrisbee that is an awful way to find out your situation. They deserve a stinging rebuke if you have the energy. I remember misreading one letter and thinking I had stage 3 cancer not grade 3 stage 1.
Love to all
Top

Thank you for your post @HauntedDishcloth . I am scheduled for a LICAP reconstruction at worst, which is classed as a partial breast reconstruction. The flap comes from under the arm, and doesn't involve moving any muscle.

The lumpectomy initially healed well with a small dint in my breast - no worry at all. But it all went pear shaped after the radiotherapy, which had a big impact on the area of the hematoma. After opening and then starting to heal several times, I now have a massive valley at the side of my breast, although the nipple and cleavage area are fine. I looked into the fat transfer from the abdomen yesterday, which was also suggested, and that might be the sensible solution.

I think that the surgeon will have to decide when she removes the rubbish - as it is only at that point she will know how big a hole there is to fill. I just need to trust her.

Can I ask a quick question? Hoping for some straight talking from you lovely lot. I have surgery (not exactly sure what but lumpectomy at worst) scheduled for 3 July. Would it be utter insanity to book a week’s short haul holiday for me and my teens maybe early August? Their twat of a father hasn’t organised anything despite me telling him at Christmas they would need a break and I just want us all to have a nice time. I’ve had an insurance quote which isn’t too bad. I just don’t want to get their hopes up if the likelihood is it won’t happen.

Yes I think that would be OK Bring I had first mastectomy in December 21, maybe 17th then second surgery Jan 22, maybe 21st to remove all lymph nodes and redo mastectomy site then went on holiday for a week for Feb half term during which went swimming. The only issues would be if it hasn't healed enough they may not be keen on you swimming but I think should be OK by then and secondly if there's any chance of lymph node spread and they might want a second op or they don't get clear margins and want a second op. But I would say its fine and go and enjoy it, just tell hospital in advance.

Based on my mastectomy experience — unless you can guarantee you won’t be saddled with a drain, I wouldn’t risk it. Do they do drains for lumpectomies ever? Mine was resting on a nerve I think, and was agony for the ~3 weeks it was in.

Could you plan something more flexible without flying? You might be OK, but it would be really annoying to lose money/miss out on a holiday you can’t change/go on holiday but not enjoy it because you haven’t properly recovered.

Thank you btw to @SierraSapphire and @TopOfTheCliff for your earlier replies to me. I’m still rubbish at keeping up with this thread! I’m waiting on my GP’s blood test results now, and I’ve started taking probiotics which are supposedly good for cholesterol. I’ve also just literally drunk the last of my flavoured vodkas, with just one other (small) bottle of vodka left. I’m not the world’s biggest drinker, but I won’t be buying anymore for the house again! I’ve also found a brown bread I like instead of white. Making small steps…

Maybe give your breast care nurses a ring and ask them Bring I would have been fine, mastectomy, no reconstruction and no drain, there was a second op after first one but it could have been put back a week for a holiday and holidays are great. I did stick with UK during treatment, Scotland, Lake District and Wales and Cornwall, advantage of that is hospitals are free but didn't need any so could have gone abroad.

Thanks Summercycling, yes let's continue the discussion here.

Topofthecliff, I have been prescribed ACR inhibitor drugs for my heart, so I am at a loss how my heart is doing at the moment. I will have a discussion with my doctor this week. I am also due to start Tamoxifen which I am not looking forward to.

Has anyone on here taken both Ramipril and Tamoxifen together? Did you have any side effects

https://www.mumsnet.com/talk/general_health/4811209-cancer-support-thread-87-everyone-here-is-so-supportive

new thread - nearly full up here

@bringonyourwreckingball I had a lumpectomy and an axillary node clearance exactly three weeks later as they found cancer in two of the three sentinel nodes. I felt fine after my lumpectomy and could definitely have gone away, my only issue was constipation because of the op 🤦🏼‍♀️ I don’t remember being in much discomfort with it at all. I had a drain in for a week with the node clearance and someone came every day to fiddle about with it so I couldn’t have gone anywhere with it in, but after it was out I was fine - albeit definitely more sore than the first time round.

I am not on Tamoxifen because my cancer is only HER2, not hormonal. I have had 12 Phesgos so far, (that's Herceptin + Perjeta) out of 18.

Herceptin is very well known for causing heart problems including a low LVEF which is our heart pump and should be 55-70%.

I am on an ARB and calcium channel blocker for my high blood pressure caused by chemo and which is still too high.

My heart and blood pressure have really suffered on EC chemo and Phesgo. My heart rate is still faster than before treatment started, although slower than at its peak on chemo when it was over 90 even at night. Pre-chemo it was 50s at night.

I imagine there are plenty of people who have taken both Ramipril and Tamoxifen, maybe someone here.

I'm 54 and was diagnosed on 20th Apr with IDC gr3, ER and PR+ HER-. I still have no idea whether I'll be having chemo (at all) and what my surgery will be (part or all) or even when it will be. I had a 2nd ultrasound yesterday to look at some areas the MRI brought up. The consultant radiologist told me if she couldn't find it on ultrasound I'd have to be referred to London where they have an MRI machine that can do a biopsy from underneath. Made me shudder, I HATE breast MRI's. Luckily she found it! did a biopsy, put a clip in and a clip in my original tumour so they can measure the distanced between the two. The suspicious area on the MRI they think is a pre cancerous bloom but the biopsy will confirm. Seems like a lot of effort to me, I'd be happy for them to remove the whole thing but I've not seen the surgeon since my diagnosis so can't tell her that! My results appt is 1st June. What was nice is that the need for masks has gone away due to covid no longer being a problem it seems :)

Hi all, I started a separate post then saw this group. I was hoping I may get some advice. Pre warning it’s a bit long..

I’ve been having stomach issues for last 3 months. It started spontaneously with diarrhoea that has never resolved then bloating not gassy more jelly/early pregnancy like ( i look 5/6 months pregnant) constant pressure on bladder and needing to go urgently, back stiffness and pressure , no appetite constant full sensation. Initially I was tested for gastro issues which all came back fine, full bloods also clear. Saw a different gp who was more concerned about bladder and did an examination and discovered I have an enlarged uterus, a mass in uterus the lump can be felt externally in pelvic region. Since the discovery i had ca125 and full hormone panel levels again fine. Also I’ve lost 7.9kg in the 3 months but again I’m hardly eating and broken sleep due to peeing which will probably account for the exhaustion I’m feeling. GP has now referred to gynaecologist on 2 week wait gp advised likely to be fibroid in light of blood work all being fine. My question is Should I be worried I keep thinking if all bloods are fine it’s ok but now worrying that I’m setting myself up for a shock should it be any thing more serious. I’m 42 & periods are fairly regular a bit stop start for the last few.

@Therocksword

It obviously wouldn't explain the mass in the uterus, but my Mum had pretty much all the other symptoms you mention due to food allergies. Her belly looked 8-9 months pregnant, she was constantly going to the loo (bladder) and felt full. It turned out she was allergic to a lot of raw fruits and vegetables. Of course it may not be that at all in your case, I just wanted to let you know that her symptoms were similar. The NHS is totally useless with allergies.

I hope your appointments find out the cause of it and that it's nothing to worry about. I think it's normal to worry in the meantime though, I understand that!

@SummerCycling thank you. I had a quite a few gastro related tests and so far so good. I am still waiting on the celiac one so could explain some of the issues the mass may be fibroids that only got picked up because of the other symptoms.

@Therocksword I expect you have realised but we have moved on to a new thread now. See the link just up the thread

Yes, I realised within minutes of posting! Thank you.