Cancer support thread #74 - come in, we're here for you.

[Hippiechick162]

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 iswww.mumsnet.com/Talk/general_health/3760336-Cancer-support-thread-73-come-in-were-here-for-you

Current members, please do introduce yourselves smile

I’ve had a lumpectomy and been discharged. But lumpectomy doesn’t show clear margins. No suggestion of having further surgery. That doesn't sound right at all. My surgeon said they have to get clear margins.

@daisypond

Has anyone had to go about getting a second opinion over their treatment? If so, how do you go about it? I’ve had a lumpectomy and been discharged. But lumpectomy doesn’t show clear margins. No suggestion of having further surgery. I asked nurse to ask doctor, who said they removed the tumour but they “don’t tend to do that” - remove the further tissue. I asked nurse if that was common. She said she’d seen it once before for aDCIS. I have lobular. I spoke to both Macmillan and Breast Cancer Care, who think I haven’t been treated properly, especially with the type I have. I’m not sure what to do.

I hade two lumpectomies and a lymph node removal . The second lumpectomy did stop I’ll not show a clear margin and although it was borderline I was advised to have mastectomy. I would certainly push for more information . It might be a wait and see scenario but I don’t think that would sit easy with me .

did not show a clear margin
I need an edit function !

I had three further operations to clear margins. I had one edge that was a bit naughty! I nearly lost my nork over it as other surgeons got to a stage where they said mx but my surgeon said for the sake of 0.7 mm she wasn't going to do that. They told me that one woman had had seven clearances - I had had enough by op number 4.

Ok. Thank you, @Thymeout, @Derxa, @Trumpton, @Flyingarcher
I’m seriously struggling with the idea of not trusting the doctors. They’re the experts. I’m at a London teaching hospital. But worry over possible maltreatment is damaging my mental health no end. Consultant did not tell me there weren’t clear margins. I found that out later. I spoke to GP yesterday who says the record says “no further excision recommended” but no explanation as to why. She is going to both phone and write to hospital for an explanation first, and then we’ll talk about transferring me elsewhere. I’ve also been advised to contact PALS to complain about the poor communication I’ve had and also the consultant’s general attitude. I could do without this.

I can really identify with needing to know. One thing is that the microscopes used are so powerful that they can identify tiny things that would not have been seen a few years ago. The margin is only 1mm, which never sounded a lot to me.

I can recommend East Surrey hospital, if you are near and The Marsden is supposed to be excellent.

I've not been on for a while. I hope everyone's treatment is progressing well and those that are waiting to hear - I have my fingers crossed for all of you.

I finished yesterday! 25 radio, 5 chemo and 4 brachytherapy all done.

Was meant to get out of hospital today but they let me leave last night. Was so good to get home.

Now the 12 week wait to see if it's all worked 🤞🏼

I really hope it has worked, Chesney.

I'm just perfunctorily checking in, I guess. I'm still so sad that my gorgeous friend Sarah who was on this thread has died a month ago, with no tribute or fanfare.

I've been through hell and back, medically, myself, lately, but I don't have the energy to explain.

Best wishes to everybody struggling

LondonHuffyPuffy was her name on here.

Hi @BitOfFun, I’m very sorry to hear about Sarah / LondonHuffyPuffy - I remember her (and you!) from the days I was actively posting on here.
I’m also sorry to hear you’ve been having more issues yourself

I've been getting pissed all night and crying. I miss her so much.

@BitOfFun
I’m so sorry.

@BitOfFun

I joined this group in late August 2019 after my first lumpectomy .
I don’t think that LondonHuffyPuffy And I crossed paths/ posts at all but am so sorry to hear that she had died .
It won’t help but I will light my favourite candle today .
Bed rest day today as totally blitzed and have “dire-rear” after Herceptin .

I just read the thread I joined on and in September I was complaining about cabin fever after an op . Little did we know .....

I'm so sorry @BitOfFun both for the loss of your friend Sarah and also for your health issues.

A good friend of mine got diagnosed during my second week of treatment. Much worse than me, different cancer and stage 4. It knocked the wind out of me.

I was being all positive during treatment and the news floored me. It's so unfair. How may I be cured and she can't. I was so angry and upset at the unfairness of it all. Still am.

If I get an clear in 12 weeks time, I'll feel happy but also sad. And guilty too. There's no one to direct your anger at is there. It's no ones fault. Just this awful disease.

@BitOfFun I'm sorry about your loss. I hope you have good support at this time.

@Chesneyhawkes1 Fingers crosses for good outcome.

@Trumpton @daisypond @derxa Scary to have questions about your treatment. Keep advocating for your health and I hope you all get clarity soon.

Love to all. ❤️

I think I bonded with Sarah so much because we were diagnosed with exactly the same kind of cancer in exactly the same week.

It just seems so unfair.

So sorry to hear about Sarah @BitOfFun, I remember you both joining (I'm a real old-timer but tend to lurk now and had to name change recently).

It's always amazing how vast majority of us come out of the other side of this awful, awful disease but heart-breaking when some of us don't.

@BitOfFun I am so sorry for your loss. A good friend of mine passed away at the weekend thanks to bloody cancer and I feel so angry and helpless at the same time.

I have a question. Has anyone here decided to stop taking Tamoxifen. My oncologist has just admitted that it's benefits to me are "very small" because my BC was so tiny and very unlikely to return whether I use Tamoxifen or not.

I do know Tamoxifen can cause serious health risks like oesteoporosis and heart disease, both of these run in my family. I feel like in taking T I am compromising my future health for virtually no benefit? My oncologist would much rather I just stopped taking it, than use a topical estrogen cream to combat the vaginal discomfort I sometime have.

I have zero idea of what to do. My GP just says it's my decision to make

RIP Sarah

@BitOfFun - I understand. purpleunicorns and I joined the lacies back on thread #59, and we were diagnosed within days of each other. Even when you never meet in RL, there’s something a bit special about those who are here when you first arrive, and with newbies together

I’ve posted about my broken ankle/foot on the shielding life thread - allowed out for a run, stuck foot in rut and went flying. So I’m back indoors without even the prospect of dialling in to an online exercise class to give some shape to my day.

@BitOfFun, I am so sorry, I do remember Sarah/London HuffyPuffy.
Sending you sincere condolences for your loss, and also much sympathy for what you've been going through with your health.

I was told last week that it was ovarian cancer and that I would be starting chemo and having surgery. I have ben feeling numb and angry and tearful ever since I also feel deeply ashamed that my body has succumbed to this, is this normal?

Oh Liz, love- totally normal! It's a stage you may definitely experience- you have been knocked off your feet. Come here to vent any time- you will probably feel that rage and shame lift somewhat as your treatment starts.

Have you been given a Named nurse to talk to?

Not yet I have an appt for a biopsy next Monday and then a consultation on Wednesday. It's so bloody unfair so many bad people in the world who sail through life without a care.

I was told last week that it was ovarian cancer and that I would be starting chemo and having surgery. I have ben feeling numb and angry and tearful ever since I also feel deeply ashamed that my body has succumbed to this, is this normal? Oh please do not feel ashamed. It's not your fault.

@Lizdeflores I'm really sorry, both for the diagnosis and for your feelings of shame. Could you try thinking of the cancer as a ram raider that bashed its way through your body's reasonable defences, rather than your body carelessly leaving the door unlocked? That might sound ridiculous and make no sense to you. But having cancer isn't any kind of failure on your part! I hope this isn't a totally off thing to say.

As I said upthread, I had radical hysterectomy and chemo for ovarian cancer last year so if there's anything you want to ask, go right ahead.