Primary occult breast cancer - anyone else??

Hi Sara,

I’m was diagnosed with occult breast cancer in 2014. I had an axillary clearance on my left side. I went through all the treatments, radiation and chemotherapy. It’s 4 years since my cancer was diagnosed and I have a check up every year. It was scary and I empathise with what your experiencing right now. I was 46 when diagnosed.

I’ve come through the experience and was totally lost with diagnosis thinking it must be somewhere else in my body. I had the usual MRI and was dreading the worst, luckily it was occult breast cancer and no trace anywhere else.

I had a further MRI last year and the radiologist found a suspicious mass. The first biopsy was negative and the radiologist wasn’t satisfied so a further biopsy was carried out, nightmare wait, but luckily it wasn’t cancer.

The only advise I can give is to have as much sleep as possible. Have whatever you fancy to eat, it my case malteesers and Greggs sausage rolls were my food craving during chemotherapy. After the initial stages of chemotherapy I ate much healthier options, lots of fresh fruit and vegetables, oh and green tea. I did go through a very severe menopause which was grim. I’m now through it all now and looking ahead.

I hope your through your chemotherapy now as your post was January 2018. Stay strong and remember you will come through this experience a stronger person.

Thinking of you

Ida (GS)

Hi Ida

Many thanks for your message. I’ve been told how rare occult breast cancer is so it’s very good to hear that you’re doing well and all clear. 

I have finished chemo - in fact I was so ill with my last cycle in February that the oncologist agreed that I could skip the final planned cycle. My scans after 6 cycles were good and I had surgery just over a week ago - the same as you, axillary node clearance on the left side. 

I’ve tried to stay positive all the way through but I’ve had some desperate days, I must admit. My main issue is that feeling, just like you say .... it must be somewhere else in my body. My scans were all clear though, so I know it’s not rational .... except that I never would have known I had this without a very good routine mammogram w.hen I hit 53! The lymph node initially identified was right up against my chest wall, so it was hidden deep within my breast, with no outward signs at all.  Scary really, as even for surgery last week it had to be ‘tagged’ first with a clip, then a wire, backed up by further mammograms, so that the surgeon made sure he got it. I have a great team of breast care nurses, oncologists, surgeons, etc so I’m confident that I’ve had the best possible treatment. I get my histology results next week, then it’s radiotherapy and probably Tamoxifen to follow. 

I’m trying to take this one step at a time but I can’t help having that nagging worry in my mind that I was lucky this was even picked up. I’m told there’s very little research about occult breast cancer. My surgeon reassures me that the axillary node clearance will do the job, and that women who’ve had the same treatment have done very well, so I’m incredibly pleased that you got in touch and are proving her right!! I’m glad to say I appear to be healing up well, although it’s all still pretty sore of course. The best thing is that I’m able to eat properly again! Like you I ate whatever took my fancy during chemo, including rather too many chocolate biscuits ...  I’m trying to eat healthy meals again now, as otherwise I’ll turn into a blob! 

Many thanks again for your encouraging words. 

Sara

Hi just joined and searched occult breast cancer, yes that was me 2008 aged 43.  Had mastectomy, chemo and radiotherapy. Did have some side effects from tamoxifen giddiness and migraines but generally ok. 

Unfortunately 2016 they found a slightly enlarged lymph node in my clavicle region which is difficult to remove so was given hormone suppressants. I also now have a slight patch in my pelvic bone. 

To be honest I think we're considered a bit of a mystery !  But i have gone ten years and still here and at the moment it's not on any major organ I suppose i must be thankful for that

Hope you're doing well x 

LabradorLass

Hi and that sort of weird face welcome. But glad you have found here rather than some crappy site 

Not in your cancer group but to be honest think you have a quite unusual brand there. But .... we do unusual we do  different and we do WTF. Oh blimey I’ll be on the naughty step again

But we also do great hands of friendship across the WiFi . We do support and guidance when we can. We do awake at daft times. We do waiting for results

So please find a thread on here or keep posting here someone will be along to hold out a virtual hand of friendship

Tomorrow after a meet up in Brum of 5 ladies from here, if I see you’ve posted again I’ll happily signpost you to some threads 

Leolady56

Hi, and thank you for your post. I’m doing well, I think! I’m a year down the line. Active treatment is done and I’m just chucking down the Letrozole every day, plus having Zometa infusions every 6 months. I’ve started Parkrun every week and I’m losing weight, plus I’m just joining my local Rock Choir!! I’m in a new job. I have new, grey curly hair. All in all I’m not bad. Obviously I have the odd wobble but the breast clinic always check me out and support me. Just had my first mammogram and I’m due an MRI aswell because I’m so unusual- fingers crossed!!! It’s good to know I’m not alone, so I hope you continue to do well. Thanks for getting in touch. 

Sara08

Hi another Rocky here. Hope your Footloose is going well

Been working so hard !!

Kick off your Sunday shoes

Gosh I love it 2hrs of singing and not thinking of the poop

Think is another chick

Leolady56

Hi LabradorLass. I too have primary breast occult cancer. An enlarged lymph node was found under my left arm in August 2017. A CT scan showed no spread and an MRI showed no primary in breast. I had an an axillary node clearance at beginning of October where 5 out of the 11 nodes removed were positive. I then had chemo, 6 cycles of FEC followed by 15 lots of radiotherapy. I am now on Letrozole which is giving me a few aches and pains and disturbed sleep. I was also supposed to have Bisphosonates but I declined because my dentist told me I would need to have at least 5 teeth taken out before I could start them which put me off having them. That and the fact I read somewhere that Bisphosonates only give you a 2 to 3 % chance of stopping cancer spreading into your bones. Must admit though that at the back of my mind lurks a suspicious I may have made the wrong decision. Good to meet others who have the same rare type of breast cancer as mine. Meant also to say I had another MRI in March this year when chemo finished and a mammogram in August, both of which were fine. I now have only to get yearly mammograms.

Hi

Our journeys sound very similar  - I was diagnosed a year ago (Fri 13th!) due to one enlarged lymph node near my chest wall, so it was buried pretty deep. I had no visible signs at all of cancer, and no tumours. I had chemo, then axillary node clearance (10 out of 18 had cancer in, so similar proportions), then radiotherapy. I’m having similar issues with Letrozole but I’ve just started acupuncture to try to help with sweats, aches and insomnia, as my oncologist said it’s helped some other women. I’m also taking sage tablets again, which I was taking pre-cancer for menopausal symptoms!! MRI is due soon and mammogram is all done, so it’s just waiting for results now. I did opt for the biophosphonates as frankly I’ll grab on to anything that might help and we have a family history of osteoporosis so I’m concerned about that too. However, in your shoes I probably would have said no. 

Hey there. Footloose is all done (I came in on the end of it so not sure I completely got it!!) so we’ve started on a bit of Justin Timberlake - Can’t stop the feeling! Lovely! I’ve just joined but I think it’ll be good for the soul x 

Hi Prinesa8 great to hear from you. Glad all is well x I know how difficult it is constantly worrying about this awful disease. The good thing is we're being monitored. 

Thankfully they found my recurrance early and am being treated. So frustrating 8 years on you think you've beaten the bloody thing and beginning to relax but nope mine's back just like my poor mum's. 

Just waiting to hear my options regarding this rogue lymph node which is in a difficult place to remove, the other issue is radiotherapy. They have to find my archived notes from 9 years ago to see if I have had radiotherapy in that area. If so its chemo ...... not looking forward to that again. 

Oh well it is what it is. Have to get on with it. Keep smiling x