Cancer support thread #73 - come in, we're here for you.

[Trumpton]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is HERE

Current members, please do introduce yourselves smile

Hi everyone.

Hope stuff is going well. Got a kind of plan in place now. Got to have a mastectomy, they've given me 4 options of reconstructive surgery that I could have including a tummy tuck that they use to rebuild the breast
After that cancer nurse said around 12 months of chemo as they have found 2 different types of cancer 1 in situ and 1 invasive ductal cancer. They wont know the stage until they have directed the breast following removal. Surgery scheduled for 4 weeks from today...2 days before my birthday!

@Nonotmenori whatever gets you through within reason. I don't think over hauling your diet to only clean eating at this point will make any difference but I suppose they're only thinking of you. My family are all being overly nice and talking in soft voices etc really quite disconcerting. Told them all to treat me like normal so hopefully they'll start.

Have a good week everyone xx

hippie glad you have your date now xxx

bridget thanks! Well, I was going to go private but got an appt from local hospital for 2 weeks tomorrow!...

Not sure what to do tbh. Left eye getting worse. (Shrug)

@Hippiechick162 great that you've got a concrete plan and a date for you operation, hopefully it will feel as if something is being done now. Do you have to decide on whether to have reconstruction and if so what kind?
There are lots of different chemo regimes of course, but I wonder whether they said 12 months or was it 12 weeks of chemo? A few of us on here had surgery first for invasive ductal carcinoma IDS as well as DCIS which is ductal carcinoma in situ and then 12 weeks of weekly chemo?

Hi, I meant invasive lobular cancer not ductal. I'm sure she said 12 months but given the amount of information she could have said 12 minutes lol!
Hopefully it's 12 weeks! She did say between 9 and 12 ....husband is sure she said months as well but will find out soon enough. I'm going to start writing everything down because I'm sure I've missed loads.

Can anyone tell me about the different reconstructive surgery procedures? The consultant has said it's my choice. I know I don't want the implant as it will be vastly different from the other breast but I don't know whether to have the muscle and fat from my back to reconstruct or the tummy tuck and use that to reconstruct. Some experienced voices would help xx

Oh goodness, Hippiechick - so much information to digest. Do they do the reconstruction at the same time as the mastectomy? Either way, it's good to have a plan and a date to work towards - I'll drink to that.

Yes, my consultant has booked me in for 4 weeks for both the mastectomy and the reconstructive surgery at the same time. I'm definitely having a glass or 2 tonight.

It is a lot to take in, I'd find it easier if all the information was written down so I could re read over it later. I don't know how you guys have taken it all in...so many bloody anacronyms as well! Thanks for listening to me blether

@Hippiechick162 ah lobular cancer, so could be 12 months of chemo for all I know! @Trumpton is having mastectomy and reconstructive surgery in March and may know more than I do. As to not taking it in, that's where the breast care nurses come into their own. I had made copious notes but still didn't understand the significance of certain terms. Mine rang me the day after the diagnosis meeting and was happy to talk through the whole thing again. Maybe you could write down a list of questions and give yours a ring?

@Hippiechick162
Trumpton here . I had #9 of 12 chemo today and bit blitzed . Will reply properly when I am not so boss-eyed !
As Skap says I am having mastectomy with tummy reconstruction in March and happy to chat .
But trying to get back to sleep now .
Catch up tomorrow over a large coffee at The Patience Inn .

Hello everyone
@DinosaurMayonnaise another one saying I can’t believe people would be so crass as to outright disbelieve you’ve had treatment for cancer. Is it a cack handed way of telling you look well?!

@Nonotmenori you should get to see a dietitian early on as well who you can ask about what’s good to eat while on treatment. Mine told me to eat high calorie stuff and frankly whatever I fancied because she recognised correctly that chemo can completely mess up your enjoyment of food, and that getting energy in is the most important thing. Even if clean eating is good for health it would kind of be like shutting the stable door after the horse has bolted wouldn’t it?! Luckily I had very few attempts from people to make me eat turmeric or juice every vegetable in sight, and my husband would bring me crisps or super noodles or whatever crap I felt I could get down without comment!

@Hippiechick162 how do you feel about the prospect of the mastectomy? I’m always very impressed how much women seem to take it in their stride as I’m sure it would have taken some getting my head around if I’d needed that.

@Stinkyeddie are you not going to have the BUPA appointment then? Given how long you’ve waited, your concern about your left eye and how unclear all the messages have been, if you can take an earlier appointment I definitely would in your shoes.

Have a good weekend everyone and I hope any bugs and nasty side effects are quickly gone

Hi @Brassica I'm ok with it, it is what it is. So long as it's working towards getting rid of the cancer I can handle it.

@Trumpton hope you feel better soon, don't worry about replying there's no rush.

@Stinkyeddie it's all a bit of a mess isn't it? What are you going to do? I think if it was me I would probably go for the quickest appointment but that's just me xx

Hi. Was here at the start of the week after being referred to the breast clinic following my first mammogram. Had my appointment yesterday where they took more mammograms, an ultrasound then finally a biopsy. Apparently, there is a concentration of microcalcifications in my right breast which they wanted to investigate. Coincidentally they're in exactly the same area where I had a large fibroadenoma removed 25 years ago.

The ultrasound showed up a little cyst in the same area which the consultant said was a good sign, as cysts usually accompany benign microcalcifications. The biopsy wasn't painful in itself but all the pushing and pulling to get my boob in place, pinched between the mammogram plates, was really uncomfortable. So now I just have to wait for the results on Jan. 30th. The consultant rated me as 2/3 on the scale which means they think everything is fine but they want to check to be 100%

Logically I understand that all the indications look reassuring but I am fighting the fear all the time. DH is acting all relieved like it's all over and everything is fine, just left with a tick boxing exercise. But he's probably doing that to reassure me. On the other hand he's being extra nice and babying me a bit so I know he's worried too. Sorry for waggling on and on and I feel stupid and guilty when some of you lovely ladies are dealing with much bigger problems so bravely and well.

@peaceanddove as everyone on here will tell you the waiting is the hardest part. My experience of the breast clinic is that they tell you if they are suspicious. It sounds like they have done their best to be as open as possible with you, they think it will probably be benign but only a biopsy will tell.
So you have to get yourself through the next 12 days. Your DH is acting just like mine. He completely refuses to worry until there is concrete evidence. Trying to reassure you is well meaning but doesn't work for me I wanted to kill him. I find that keeping very busy helps. Lots of decorating and cupboard tidying went on here.
Also your breast will feel sore from the biopsy for quite a while, don't let that worry you unnecessarily it's not a sign of anything sinister just trauma.

Thank you for replying to me. Looks like we have the same DH, I had to go out for a walk to get away from his relentless optimism.

Have been researching and I'm stunned at the amount of breast cancers that are considered overdiagnosed! I had no idea that for each woman diagnosed with breast cancer that is dangerous, 3 women are also diagnosed with breast cancers that would never have become a problem and don't need treating. I had no idea this happened even though a few friends and family are doctors.

I guess those overdiagnosed BCs are what is called DCIS (ductal carcinoma in situ). I've read a bit on that and there is some controversy because they just can't tell which ones will go on to become invasive.
I suspect that's what I had for years before I found a lump last year. I had a painful left breast. I'd been to the breast clinic in 2014 and 2017 and nothing showed up on mammogram or ultrasound. I also had a routine screening mammogram in 2018 - clear. So three opportunities to pick this up were missed.
The lump when removed was only 7mm but very aggressive and was embedded in 33mm of DCIS. I reckon that DCIS was there all along and finally turned into invasive cancer. So I would be on the side of treatment for yhose cancers that might not become a problem.

brassica and hippie
Hi both x
No, I'm going to wait til 1st feb now.
Partially because dh is away in the US this week and partially its that by the time I go, make another appt for tests etc then go back for follow up it could be after 1st feb anyway.
I'm also seeing the same dr at the nhs clinic as I would at the bupa one.
Saw a friend and ex-nurse today who I told.
I haven't really told anyone except dh and you guys so it was nice to unload a bit.
My eyesight in my left eye is nownot great. I'm struggling to read :(
(I read a lot!!)
Also having nasty rib pain which I'm doing my best to ignore.
So...unless my eyesight in that eye goes totally my appt is 2 weels today.
I hope you are both ok?
hippie I'm terrible with too much choice/too many options!....How long do you have to make a decision wrt reconstruction?
I'm not googling anymore after I googled a vitroectomy (vom)

Good evening , new to Mumsnet, first post, just wanted to off load a bit . History. I am 67, in excellent health until October of last year when I contacted pneumonia. All very dramatic, went to GP, told me had to go to A & E, had sepsis workup , admitted and on IV antibiotics etc . Did really well, only in three days and back to normal within two weeks. No follow up deemed necessary other than routine chest x ray .

Fast forward to four weeks ago when out of the blue I received an appointment for a CT scan ! No accompanying letter , nothing . Eventually a week later I got a letter from consultant . Basically saying " small area of concern had shown up on X ray and they just wanted to rule out anything suspicious, but not to be concerned ".

My scan is this coming Wednesday and I feel like I am in total limbo. Some days I manage to convince myself that all is ok, then I have dreadful nights when I cant sleep and have myself worried sick.

I am exhausted, weepy and just totally done in. Any advice gratefully received . Thank you .

Hi @stinkyeddie I get that. My specialist is also the director of oncology for a private hospital near me. So kind of like private but without the payment lol. I hope your friend was supportive, we all need someone in our corner. I have a week to decide...well until Wednesday! Keep in touch lovely, I'll keep checking in with you xx

@peaceanddove my dh is very like that. He's one of those "think positive" people which drives me to distraction but he means well and I know it's as much for his peace of mind as mine so I let it be and try not to snipe. Fingers crossed it's as you say just a throwback from the treatment you previously had. Stay busy, I'm with skap on that one. I've decorated kiddos room and de cluttered everywhere while waiting for my results. The wait is the hard part. Thinking of you xx

@skap @peaceanddove my husband is acting exactly the same as yours. I am getting "sure isn't it great they are on top of it ?" He alternates from being all normal to babysitting me !! I haven't told anyone else other than some close church friends who I know will be supporting me . Didn't want to be worrying family or friends unnecessarily .

eve
I'll be thinking of you on Wednesday x
hippie hope you get some good info to enable your decision x my friend was great...but concerned.
My dh just doesn't mention it. He did say he is glad he is back for appt on 1st.

hippie thank you :) ditto x

Hello Eve x

I don't know anything about CT scans, but when my Dad had pneumonia it left scarring on his lung which showed up as shadowing on subsequent chest x-rays which then had to be further investigated. It's likely this is what's happening with you?

For hippie and slap. It's classic whistling in the dark isn't it? The joke is my DH is a massive hypochondriac when it comes to himself and any ailments. I decluttered the bathroom today and scrubbed all the woodwork panelling in there which was surprisingly grubby, so now I'm debating whether to have a quiet word with the cleaner?

@peaceanddove totally! Nothing to see here! This is the only time anyone has had something that my mil hasn't had or is going through. House will be looking even more beautiful soon xx

Hello @Eve2020 here's hoping it is scarring it's the wait that drives you mad...stay away from Google. If I'd looked there I'd probably have booked my funeral plan. Good luck for Wednesday x

Hi @Eve2020. I had exactly the same experience in feb last year. A chest xray showed a shadow on my lung and I was referred for a CT scan. I immediately thought I had lung cancer. I had the CT scan and the wait for results was agonising. It also took weeks. It took a long time to get to the bottom of it and eventually I was diagnosed with bronchiectasis. None of this will help you with waiting but I now realise that if they had suspected cancer it would all have been fast tracked.

Tips? Keeping manically busy. Then after the scan making a nuisance of yourself ringing up to check if they have results. This is because if they don't see anything urgent they won't hurry to let you know.