I’m 47. I was diagnosed in Feb 2020 with DCIS 35mm Grade 2. HER2 negative and ER 7/8. Had a lumpectomy and 5 nodes removed. 1 had a 8mm metastasis.
Due to family history I decided to opt for chemotherapy. Had a complicated chemo journey as I had bad reaction to docetaxel and then an allergy to replacement paclitaxel.
Then did 4 weeks (20) of radiotherapy sessions. Have the joys of tamoxifen for 10 years.
Once my treatment was done I hit a real downer. I felt alone and lost. Thinking about the future just filled me with fear. The fact I lost my Mum to metastatic cancer in her brain in 2018, following breast cancer 17 years previously, I knew how things could turn out.
I’ve just had my first mammogram on Monday this week and was surprised that it was literally in for the scan and out. I thought it would be the one stop shop like when I had my diagnosis. I feel short changed. Now waiting 2-3 weeks for results. The wait is excruciating.
The other thing I don’t understand is why I’m not having an MRI? I was told that my tumour was not visible on my mammogram due to my breast density. So why should I feel reassured by having a mammogram. I’m not! I’ve spoken to the consultant when I had a checkup 6 months post lumpectomy but didn’t get a clear answer. I’m going to keep asking and will go privately if I have to as I can’t bear the responsibility being solely on me to find some lump or bump.
Sorry for the long rant but it feels good to share.
i know exactly where you are coming from…I’ve had BC 3 times now…the first time the cancer was undetected on the mammogram, only a benign fibroadenoma was seen which they gave me the option to remove or leave…I chose to remove and the cancer was detected by pathology…they told me it had probably gone undetected due to breast density…I then had an MRI and then needed further surgery to get a clear margin…I was 45 at the time…so wouldn’t have had a further routine mammogram for 5 years… so I never really trust mammograms now even though I’ve been having them 10 years now. But I’m sure most mammograms pick up almost all breast cancers these days and my 2nd and 3rd diagnosis’s were both picked up this way. I will still attend for yearly mammograms but tHe way I look at it now is that it’s more important to be aware of the signs and symptoms of secondary cancers as these will not show on a mammogram ( or MRI) anyway, and always get any of these checked out.
I fully appreciate your anxiety. I had a clear mammogram and a clear ultrasound, yet I had two grade 2 tumours revealed when I had a second ultrasound and SN biopsy, the only symptom being a barely noticeable outbreak in the skin of my areola. I also had 19 of the 21 lymph nodes infected so I am identified as high risk of recurrence.
I had an MRI in December 2019 and then, owing to weird things happening in my eye socket and a swollen node in my neck, I had two MRIs of neck and head this December, fortunately clear of cancer BUT identifying the mass near my eye which was there the year before but not mentioned by the radiologist.!!!
My ophthalmic surgeon has been critical of the fact that I haven’t had a full MRI as he says I should have the MRI regularly. I was a bit miffed that he criticised my treatment by the oncology team, even more miffed that he has focused on “breast cancer, high risk” so I have have had to have a deep biopsy in my eye socket without any attempt to consider any other diagnosis. I’m not anxious about recurrence - I can’t do anything if it happens, so I’m not going to worry - but I did mention my frustration to the oncologist. I was surprised to learn that annual MRIs are not the hospital’s policy for high risk patients. As it was a telephone consultation, there wasn’t scope to ask why but this is a regional centre of excellence so there must be strong clinical evidence to indicate an MRI is not necessary.
Like you, I have considered having a full MRI done privately but I do trust my oncology team and know they’re giving me all the adjuvant therapies going. I’m also mightily p***** off with the radiologists. I now have to wait for my eye diagnosis. Then I shall ask my oncologist what the rationale is behind the decision not to do annual MRIs. There is also the question of MRI v CT scan. Which is better? With the ophthalmologist muttering “They can’t see everything” when I brightly reminded her my head scans were clear, I’m beginning to wonder just what IS the best way to remain vigilant without being neurotic about it.
I can understand your anxiety, given your mother’s experience, but maybe a face-to-face discussion with your oncologist is the best starting point. Putting our faith in any diagnostic machine is not going to prevent a recurrence - it’s only as good as its radiologist, as I’ve now discovered. I do hope you find peace of mind.
I’ve been reading your post and the replies… They do know that some cancers don’t show up on mamograms…I went along with a pea sized lump in May 2018 after a clear mamogram they sent me away with a leaflet on breast pain and discomfort and told me it was thickened breast tissue…No biopsy done. I therefore stopped mythering myself with it until I found armpit lump Feb 2020. Turns out Grade 1 Invasive Ductal PR+, ER+ and HER2-…Tubular-Lobular (3 out of 17 lymph nodes were positive). The Tubular-Lobular cancers don’t show up well on the mamograms seemingly.
I was sent for CT scan and bone scan with no visible spread. Lumpectomy, Chemo and Radiotherapy last year now on Letrozole and Zolodex awaiting ovaries to be removed. I’m 49
Due to concerns in other breast now I was at the hospital yesterday…going back for mamogram and ultrasound and then biopsy…but like has been said on here…how much faith can we have in mamograms?
I’ve never been offered an MRI…was told they produce false positives so it’s not done automatically. I’m trying not to panic but the anxiety is very real as I’m now having vision problems too …
Incidentally, I was told the first mamogram is a year annually from the end of radiotharapy…which for me would be 5th October…glad I rang my nurse direct to mention the new symptoms.
I feel the same, I was 49, December 2019 I found 22mm DCIS Grade3, could not be seen on mammogram… had sentinel biopsy, lymph nodes clear… had mastectomy and I am tamoxifen for 5 years…
Had mammogram which was clear, yearly consultation over the phone, I ask the question, and it was dismissed.
I feel like I am just sitting here waiting for it to return…
not sure what the answer, apart from paying to go private.
I am currently going through the same thing. My tumour also didn’t show on the mammogram they gave me after I found a lump. Initially I was told that was due to my breast density but later I was told that it was due to the type of cancer I had that it did not interact with my breast tissue in a way that made it visible for the mammogram. Confused? I am too. Now I am due to have my first check up after all the treatment and they are offering a mammogram with contrast dye. I have told them that I do not trust it to show any tumours as the original mammogram (no contrast dye) did not show it. Also my breast is painful when manipulated in any way because of the scar tissue from the lumpectomy with LICAP so a mammogram would be agony. I am waiting to hear back re their decision.
I hope you managed to resolve your situation and that you are cancer free xx
I was diagnosed in April 2020 at the beginning of lockdown aged 48. After surgery tumour was three times the size picked up on both ultrasound and mammogram. I discussed with breast team and they agreed to annual breast MRI alongside mammogram and ultrasound. It gives me peace of mind.
Wishing you all the best
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