ongoing checkups?

[sashbash]

I saw my oncologist a few weeks ago and when asked what kind of followups/scans etc there would be after my BC treatment finished (mastectomy/axillary clearance/chemo and radio) he said there would be nothing. Just the usual mammograms. I was a bit surprised there are no further scans etc. to keep track of the cancer returning. Is this what other ladies have been told or should I be requesting something more?

[CancerkickerKathy]

I was told since I no longer have breasts there would be no mammograms. If anything MRI but only if bloodwork is off or I have some other sign. I don't have a lot of faith in that.

[Hidden]

I had lumpectomy chemotherapy and double mastectomy with first 'follow up appt' in August 2016 - I was told I don't get anything in the way of tests or scans, I was simply asked "how do you feel?" And breast cancer nurse who the appts are with checked my scar line and lymph sites for any lumps. Then told you're fine come back in 6 months.

I really struggled with this first appt as I was concerned about reoccurrence as my mother died aged 33 when I was 12 from breast cancer reoccurrence when it came back as a brain tumour 18 months after primary. The tumour spread to her lungs and she passed away.

I have triple negative cancer with higher rate if reoccurrence in first 3 years so you can imagine my panic - being told that unlike the other positive breast cancers there were no hormonal treatments available to help against reoccurrence and the best thing I could do was

Reduce stress

Lose weight

Exercise regularly

Hence you will also find me on the weight loss pages of 'unlocked' and I swim 4 times a week. I also work part time for my son now - life is so much better. It was hard accepting little in way of follow up appts but I realise I have to take personal responsibility for checking my body and reporting anything I'm not happy or sure about.

Good luck and well done on your journey xx

[sashbash in reply to Hidden]

Lavendergirl, thank you for your reply, it's really helpful... and to be reminded too of the need to be proactive. Looking back I didn't do anything about the lumps I had for weeks. Good to hear that you've made such positive changes in your life. Keep well and healthy, xx

[GinaD19]

Hi Sashbash, 5 years ago I was diagnosed with breast cancer and have since had a lumpectomy, two mastectomies including total lymph node removal on my right side (separate operations), two operations for implants and one to tidy up surplus skin. I have never been 'signed off' by my surgeon. She still checks my scars and lymph nodes every six months but my oncologist told me a year after I finished chemo that he no longer needed to see me but for me to return to see him if I am suffering from anything for longer than two weeks. No scans, blood tests, nothing. Two years ago I found a lump in my tummy that hurt. My gp referred me back to my oncologist and he scheduled a ct scan. They found no trace of cancer at all but told me I have diverticulitus, a hiatus hernea and a gall stone! As Lavendergirl says, reduce the stress in your life, lose weight and keep active. I no longer work, I walk 90 minutes in the hills most days and I have lost 2 stone and am trying to lose more. They do things differently in Spain, where we live some of the year. Breast cancer sufferers have annual blood tests to check that the cancer has not returned. I try to remain postitive and hope that if I need it, the nhs will support me once again. I hope this helps. Best wishes, Gina

[sashbash in reply to GinaD19]

Gina, those walks in the hills sound wonderful, even if the ct scan showed up some very stressful things. I'm relieved to hear it wasn't cancer though! I'll ask about blood tests - it would be interesting to know how they work and what they detect, as opposed to scans. I still can't quite believe that once the treatment is finished that's it. keep well and fit and good luck xx

[Jacbowden in reply to GinaD19]

In Australia we have blood tests too.

[blue_sky1]

This is exactly what happens. I paid for a PET scan privately after 5 years as no scans unless symptomatic. Nhs frugality.

[sashbash in reply to blue_sky1]

ok, good to know. thank you blue-sky1 x

[Debster2016]

Hi there I too asked this question just last week and was given the same reply as you to which I responded "So the NHS is reactive and it's up to me to be proactive".

So in short no there is nothing more available on the NHS. I'm going to try and get a 2nd mastectomy for my peace of mind, even consider going private to get it done as I know the NHS doesn't like taking healthy tissue nor paying for what they may say is an unnecessary operation.

Sad that the NHS can't do more.

Wishing you good health xx

[sashbash in reply to Debster2016]

Debster, thank you, I'm back at the hospital this afternoon, so will ask the question again. Good health to you too... and hope you manage to get the mastectomy on the NHS if you can... xx

[Lorraineam]

I am a one year survivor and am currently having checks 6 monthly. I had a CT scan at my first 6 month check which was clear and if the next scan is clear the oncologist will do yearly scans

[sashbash in reply to Lorraineam]

Hi Lorraine - thanks, that's really helpful to know. I'm wondering if you are in the UK and are being treated on the NHS or privately because it might be that that makes the difference...?

[Lorraineam in reply to sashbash]

Yes I am in the UK and had all my treatment on the NHS. Are you also in the UK?

[sashbash in reply to Lorraineam]

Yes I am - UK and NHS. I'm wondering if the follow up is influenced by the type/grade/stage of cancer perhaps? or whether it's genetic. Hard to know. I guess I'd have expected followups along the lines of what you're receiving....

[Lorraineam in reply to sashbash]

My cancer was grade 2. I had mastectomy, axillary node clearance, chemo and radiotherapy and am on tamoxifen for 5 years. I don't recall what type of cancer it was but was told it was the "right" type, whatever that means, so assuming it was the hormone receptive type.

[Jacbowden in reply to Lorraineam]

If anyone is concerned about the negative effects of scans, I asked advice from my natural doctor because I had been 'sugar free' since diagnosis and was dreading the effects of the glucose being rushed through my system, and he said to take a hard boiled egg to eat straight after ( fat and protein) helps dilute the sugar. As well, eating piles of greens after, helps the body settle down after the radiation. I had a huge reaction to the sugar at the last scan, but took the egg and an avocado, which balanced the blood sugar. I'm always looking at ways to protect my body from the damage caused my conventional medicine. 🌺

[boc13]

I had a single mastectomy with lymph nodes removed 2.5 years ago. I think my first visit back I expected "something more"...not sure what that is, but I'm sure it had to do with taking all precautions to not have a recurrence or a new cancer in remaining breast. Now I see my breast surgeon once a year after my mammo and sonogram of remaining breast and I see oncologist 6 months after that. However, if I think I feel even the slightest thing....I go back to my breast surgeon. She does full exam of both sides when this happens. I have swelling under my left armpit (where the breast is still intact). She can't find anything. She is now having me follow up for this every 3-6 months instead of once ayear. Just go back if something doesn't seem right. Now matter how trivial it may seem. And you will relax after awhile. It does get better and you begin to trust your body again.

[Jacbowden]

Don't they monitor thing with blood samples? I'm not yet at the 'monitoring' stage ( I wish) but that was my impression. 🌺

[boc13 in reply to Jacbowden]

No...no blood monitoring.