Off topic dilemma, what to do?

I met my old school friend for brunch today. She told me that she had been diagnosed with Stage 4 breast cancer in 2013 which had also gone into the lymph nodes. Jenny's cancer was discovered with an N.H.S. Breast Screen that call up every 3 years. I have cancelled 3 of these tests, the latest being this week, which means I haven't been checked for 9 years. I have been put off by the controversy over these scans. However, after sitting with Jenny and hearing her horrendous journey felt this is a message to me to go and get screened, particularly as I have already had cancer (thyroid 2013).

What would you do?

52 Replies

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  • I would be screened, esp in light of thyroid cancer dx. Or I'd decide which of these outcomes I'd be more at peace with: being screened and dealing w a potential cascade of information; or living, wondering but without knowing.

    I'm sorry you're in this position and I'm sorry to hear about your friend. The whole screening thing is very fraught and though I have breast cancer in my family history I too am ambivalent about it.

  • Thanks puncturedbicycle.

  • (((Margo))) know thyself I would say. And your limits. I was only saying earlier this week to my husband...how would I know if I was in the early stages of cancer ?

    My late Ma told me she felt generally meh and often took an afternoon nap that lasted several hours, when she was facing cancer, which she did several times. What am I to do then if I often feel that way and take that nap already ?

    Because Ma's first cancers were breast cancers, our lovely village GP taught me how to cop a feel properly, which I do regularly, usually in the shower with a soapy hand. I'm not so good at the looking bit as I hate to look in a mirror these days.

    Maybe have one mammo. You've limbo'd under a few and reduced your risk that way. You are still in control and can weigh up the risk vs reward if you're worried about a false positive. I am with you - although I do presently trot along when bidden, I understand. There is a woman oncologist who advises against due to the false positive thing. I can let you know that these blessed things hurt less than they used to if your breasts are polycystic.

    Know yourself and be true to yourself. Very best to you xx

  • I like your reply Rapunzel. I think what shocked me most about Jenny was that she had NO symptoms, absolutely nothing. The small lump was not visible at all, and the small lump turned out to be a big lump that had spread.

    I have actually made an appointment for a screen test in a fortnight, but in the meantime will weigh things up and hopefully get some more opinions.

    Thanks again, just wish I knew myself?!!!!

  • Rapunzel my mum's surgeon recommended self-examination, but apparently, because it results in so many 'unnecessary' biopsies it is also in contention. So confusing.

  • You have to know when to step off the merry-go- round, don't you ? Anastacia urged us all to keep up with our mammos because her first breast cancer was 'hiding' behind her nipple. She has Crohn's as well poor love.

    But I can see she's had more err work done than reconstruction. Go girl ! ;)

  • No brainer, get it done asap. I never refuse any screening offers, why take the risk. Our neighbour has terminal breast cancer which has spread to her spine, she never thought it would happen to her

  • That's sad about your neighbour bantam12, have made the appointment.

  • Good move Margo ☺

  • Margo do you mind if I ask you a question (really more about me than about you)? Do you resist screening because of the radiation, the risk of false positives/biopsies etc, the possibility they might find cancer or __fill in the blank__?

    For myself, I don't like the idea of being regularly exposed to radiation and I'm not keen on being asked for biopsies and making all the decisions involved. I know the current protocol says screening is better than not, but it takes the actual experts so long to agree on best practice that it's hard to know who to look to for guidance.

  • All of those questions puncturedbicycle, fear of them all. Have just posted something from Dr Mercola you might find of interest.

  • I'm not a big Mercola fan but that article aside, the medical establishment have been saying for years that screening has risks and benefits. There has been so much research into bc in recent years I think it's hard for scientists to know how to interpret the results, so there is always a lag in the results being reflected in the protocol.

    The scariest part of my mum being diagnosed was finding out how little they know and how upfront they are about their ignorance. But to be knowledgeable you have to know that you don't know what you don't know. :-)

    Angel_of_the_North made a good point, if you will refuse treatment then it probably isn't worth being screened.

  • Although I said I would refuse treatment, it's all very well I suppose until you are in the situation, I think I would refuse, but you never know. I hope I don't find out. Thanks puncturedbicycle.

  • Yes, I hope so too. :-)

  • That is very sad news Margo. My mother died from breast cancer when she was 59, one sister developed breast cancer at 60 a few years ago, another sister developed it exactly a year later, this really frightened me so I asked for genetic counselling , I was denied the test even with my family's history , and I was taking HRT at the time! I was described as at medium risk. Hope you go for the mammogram Margo, good luck with it ,and so sorry for your friend .

  • Wow, that's crazy Beverleyb. Did you realise you can contest that decision? Something similar happened to me (they advised that my sister have genetic testing, but it isn't available where she lives) and the breast surgeon said I could contact the genetic counsellor and explain.

    The test should be made available to your sisters at the very least I should have thought.

  • No I didn't realise I could contest the decision, I put it down to cost as usual .

  • Same here. If the surgeon hadn't told me I'd be none the wiser.

  • Thanks Beverleyb will be going in a fortnight. Such sadness losing your mother when she was just 59.

  • Don't want to scare you but hrt is dangerous with that history. I had breast cancer in both breasts. One Brest lump never showed on mammogram other one dos. My original Drs watched my lump to keep an eye on it. They watched me develop cancer. I was on lowest dose possible hey therapy. Asked Drs if it was safe said yes. Told them my mom and aunt both had breast cancer. Well it wasn't safe it fed my cancer as my cancer was estrogen positive as most breast cancers are. Thank God I changed Drs and went to Sloan Kettering in New York. Would not be here if I didn't. Not knowing what's going on in your body is scary and apparently what Drs say is safe may not be either. You have to go with your gut and do what you feel is right for you. Good luck.

  • Nanny23, So sorry you went through all that, why didnt the doctor remove your lump instead of keeping an eye on it. It must have been so worrying for you and rightly so as you developed breast cancer. Strange as it seems my sisters never had HRT I was the only one who used it. I eventually used bioidentical HRT have stopped everything now as my menopause stopped 2 or 3 years ago.

  • As you have no symptoms I'd go and get one, after all it is six years. Particularly as you've already had cancer.

    I felt a lump and saw a lovely surgeon one afternoon and I was in hospital the next afternoon for an op.

    Just before the op I had an X-Ray and I had already been sedated and a nurse was with me. When the radiologist came into the room after looking at the x-ray (I was in a gown etc) - I said I'm having an op and he replied 'Theres NO Point'. Which left me stunned to say the least but I am a calm person so the nurse took me back to my room and a little while later someone came rushing in to ask where I was as the operation room was awaiting me. I told her I was told there was 'no point'. I mean what would most people think if a doctor made a statement 'there's no point' in having an op. Anyway everything went smoothly, the lump was removed and examined and there was nothing untoward, so not everything is cancerous.

    I then told my three female colleagues to get a scan - one had a pre-cancerous area which would be looked at every so often and the other had a lump which was also removed, so out of four females, three had a problem in their breast.

  • It's actually 9 years now Shaws. I have booked myself in now.

    What a bizarre experience for you in hospital.

    Frightening regarding your colleagues.

  • I have been screened regularly up to now Margo, but must admit I have been worried each time. Think I will still go on being scanned though.

  • Damned if we do and damned if we don't j_bee.

  • If you would be happy to have surgery and chemo if you were diagnosed, go and be screened. If you would not do the treatment, live as though you had already been diagnosed and don't bother with the screening. It has to be an individual choice.

  • Thanks Angel of the north. If I was found to have breast cancer, I most certainly would not take the medicine. There is a lot of evidence of natural cures.

  • Don't want to scare but those natural cures for breast cancer don't work. Don't fool yourself. I worked with someone who opted for natural cure. She died.

  • I think there are natural cures and natural cures, some of them do work, there is a lot of evidence. I think looking at diet would be the first move. That said, who knows what I would do if I was diagnosed, you don't know anything until you are in the situation.

    However I take your point Nanny23, sad for the lady in question, but she may have died having pharma' drugs too.

  • I personally think you can do both. You can add to your treatment by doing all those things good diet vitamins etc. but unfortunately you need strong drugs to rid yourself of cancer. There are many new treatments since I've had cancer in 2002 that target only cancer cells and protect good cells. Hopefully this will be the norm in the future. I am convinced if I didn't have double mastectomy which I chose for myself and chemotherapy I would not be here. I know too many people who have had lumpectomies only to have their cancer return. I originally opted for lumpectomy when only in one breast when I learned the other breast had cancer too I chose mastectomies. Even though my cancer in other breast was different type and not metastatic. Drs said I didn't have to go that route but would have needed radiation on top of chemo if I didn't. Did not think my body could tolerate strong radiation after chemo. So for me this was right decision. Every case is different. Hopefully you will never have to choose stay healthy.

  • 'cancer's greatest enemy: Your immune system' :(

  • Apparently this is why cancer is prevalent in older people, because as we age our immunity deteriorates.

  • Yes it makes sense Rapunzel!

  • Having had BBC myself 10 years back,I have taken the mammo's since but in future would only have the newer ultrasound done instead.less painful more accurate I was told.good luck whatever you decide on.

  • Sorry that you have had BC, quite shocking just how many people have had it, or live with it. Ultrasound, haven't heard of that, will investigate. Thank you soppysal.

  • soppysal is ultrasound available as an alternative to mammo? I've had it for diagnostics but never for screening. It does seem preferable. At least preferable for the patient.

  • Oops BC not BBC!

  • Yes it is available and am told it is able to pick up tumours at an earlier point than conventional mammo and of course no radiation.it is available privately but sorry not so sure if NHS are offering it as a better alternative yet.

  • Found this soppysal:-

    verywell.com/why-not-annual...

  • Good info Margo, a friend of mine has long history of lumps so is regularly fast tracked to the breast clinic and a mammogram is always the first thing they do then an ultrasound if needs be.

  • Hi Margo thanks for that I did look at the link. Can only say this is what was put to me in my breast clinic,it wasn't offered offered on NHS But was muted that it should be as they think it does pick up stuff earlier.mine was lobular which was more concerning to them than the DCIS lump that it was hiding behind, so it may have been in reference to that kind of cancer being easier to see on ultrasound rather than the type which presents with the more common lump which mammo's can pick up well. Good luck with whatever you decide to go with re screening or not,pro's and cons for both I think. Mine was dug out with clear margins so I declined chemo and went for radiotherapy and 5 years hormone pills. 10 years on no recurrence yet so hopefully it was a good call- but who knows time will tell I guess!!

  • Interesting soppysal, how would I go about asking if I could have it, think I would prefer ultrasound to a mammogram even if I have to pay?

  • Hi Margo. I tend to use spire hospitals because it suits me but you could get lots of info from breast cancer uk or breast cancer.org. You can speak on the phone and ask whatever you would like to know, it's not just for sufferers and their advice would be good.

  • Thanks soppysal.

  • Hi Margo, I am very sorry to hear about your friend Jenny, it is very sad and a shock to everyone. For peace of mind, I would book a screening or chat with your dr. The reason I suggest it, is that I have cancelled one this year myself when my mum passed away, just could not face it and haven't rebooked, I know I have too. My last one was over 2 years ago. You take care :)

  • Thanks JollyDolly

  • Maybe worth looking at the website grassrootshealth.net where Carole - the lady who set it up - describes herself as a breast cancer treatment survivor ! She advocates good levels of vitamin D. There is a great deal on the website about breast cancer and other cancers and the levels required as prevention. See chart below ....

    grassrootshealth.net/media/...

    I had BBD until my Hashimotos was diagnosed and better treated.

  • Thanks Marz will take a look.

  • Your right about vitamin d I had cancer in both breasts in 2002. After my treatment was given by Sloan Kettering in Manhattan my oncologist prescribed mega doses of vitamin d til it got to proper levels and then maintenance dose. She told me research there said its been proven low d levels can cause certain types of cancer

  • I go for regular screening when it's offered, and was called back for a biopsy to be done. I was so scared as my mum had died from cancer at 65. Fortunately everything was fine. I do have scarring in one breast after developing an abscess when breastfeeding my youngest son. I always tell them about this scarring, in case it causes any problems. The biopsy was needed because of a small cyst. I hope all goes well for you Margo, and I am so very sad to hear about your friend.

  • Thank you MariLiz

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