I have Occult Breast Cancer. The cancer was diagnosed in my lymph nodes but couldn’t be found in my breasts. Next week I’m having an Axillary Nodes Clearance but I’ve started wondering if the cancer in my breast disappeared on its own perhaps the cancer in the nodes might disappear on its own as well if left alone. Is that possible? They don’t seem to know much about Occult Breast Cancer.
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Hi. Sorry to hear your diagnosis. Read Ticking off Breast Cancer by Sara Liyanage. She had occult bc too and her excellent book follows her treatment. She made a full recovery. I dont have occult bc, but did have 2 positive lymph nodes and subsequently had an ALND. The surgery isnt too bad and neither is the recovery. I weirdly quite enjoyed my operations as I found it all very interesting and enjoyed the science! Hope all goes well. Xxx
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Sorry to hear of your diagnosis , I have heard of it but haven’t had it myself , I’m sure someone else on forum will reply
, I had lymph node clearance the only thing was numb under my arm for weeks and you need to do the exercise they give you pain wise was fine. Not sure about tumour disappearing but I’m sure this can happen good luck and stay positive xx
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Thank you very much. That’s very helpful. I bought Liz O’Riordan’s book but you can’t have too many books and the one you suggest sounds more relevant. I also find it very interesting. Thanks to Google I’m becoming an expert.
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Thank you. I like hearing it’s not as bad as I’ve read. The warnings about what MIGHT happen sound horrendous. I was looking for an excuse to wait a few months.
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Magi it really isn’t as bad do you do find the strength to get through it all when hardest part is every time going back for results after each procedure hoping have clear margins or finding more cancer
Stay strong you will get there x
I haven’t heard about your type of cancer but I had full lymph nodes clearance - had 34 lymph nodes removed and 3 positive…the surgery is not as bad as you might think. Yes I agree with what everyone is saying…
But…and of course there is but…I am 3 years post surgery (I had 3 surgeries) chemo radiotherapy Abemaciclib, etc. now on Letrozole only got another 5 years…but I developed lymphoedema straight after my surgery and I am now attending a specialist clinic to be measured every 3-4 months as I need to wear sleeve and a glove. It’s a condition you need to manage yourself and it’s not curable. Everyone treats the cancer but after you are left to deal with so many other things…
Ask your surgeon if they can actually do a special kind of surgery where they connect the lymph vessels to the blood vessels. My surgeon didn’t even think to suggest it ah what’s your whole life to deal with lymphoedema…Google it as it’s your body and you can find more about it…you don’t need to suffer with lymphoedema…
Take care. Xx
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I didn’t know they could connect things up rather than just leave them hanging. Amongst all the other paperwork I’ve been given is a Breast Cancer Care leaflet “Reducing the risk of lymphoedema”. I’ll read it again and pay more attention this time. In the end it seems to depend on the luck of the draw how your body will react to all this brutal treatment.
@magl there is not a lot the exercises can do to help prevent it happening especially, if you need to have a full lymph nodes clearance…it will happen sooner or later…
Lymphaticovenous anastomosis (also referred to as lymphovenous bypass): Your surgeon uses microsurgical techniques and equipment to reroute your lymphatic system, bypassing damaged nodes and connecting lymphatic channels directly into your veins.**
You need to discuss it with your surgical team and find a surgeon who can do it…now it’s the time…once you have your lymph nodes removed it’s much more complicated procedure…
I was so sad when I found out after my surgery was done…you have to do your research clearly I didn’t as I believed my surgeon but now am doubting everything my oncologist says to me and always question him…yes, it’s up to us to be our own advocates…it’s our body it’s our life at the end of the day…
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My op is next Tuesday. It’s a bit late to start looking for another surgeon and don’t know whether it would be wise to postpone it any longer.
Hi magl
I know nothing about occult breast cancer BUT …
Axillary clearance does carry the risk of causing lymphoedema because of the loss of lymph nodes and the inevitable cutting through of some of the lymphatic system’s vessels …
HOWEVER the risk percentage is estimated at 20%, sometimes not occurring until many, many years later.
I opted for axillary clearance (rather than radiation - which can also damage lymph nodes and vessels) because, having had one affected lymph node found during my actual mastectomy, I wanted the rest physically examined in a lab, rather than zapping blindly.
Unluckily, I developed lymphoedema 6 weeks later in that arm and hand. It felt so unfair, but having gone through the initial treatments for it, I am keeping it at bay with maintenance. I can’t regret it though; at least I knew for sure there was no sign of further local spread.
My surgeon said node transplant to the area did not have a good success rate. He didn’t mention Lymphaticovenous anastomosis, and at that point I just hoped I’d be lucky.
Personally, I would not leave it to chance. I think vanishing cancers must be pretty rare. My understanding is that if cancer gets inside and travels through the lymphatic system, it can potentially carry the cancer further afield.
Hi. I was like you. Nothing at all showed in my breast on any type of scan! The first I knew of it was a lump under my arm. This was triple negative breast cancer in my lymph nodes. Both my surgeon and my oncologist wanted me to have lymph nodes removed. However the surgeon wanted me to have whole breast radiotherapy but the oncologist wanted me to have a mastectomy. I had 11 lymph nodes removed but only two had cancer in and they had completely responded to chemo and immuno therapy. I chose to have a mastectomy and I’m very glad I did! There was a tumour bed which showed that a sizable tumor had been in my breast but had completely responded to treatment. However I also had intermediate DCIS. These are pre-cancerous cells. Fortunately I have not yet developed lymphoedema. However I had a large seroma and I now have underarm cording. I am doing the Breast Cancer Now swimming fundraiser which is really helping with the cording.
I’ve got 3 cancerous lymph nodes found through mammogram. After extensive tests they’ve given up looking for it in the breast because they say it’s no longer there. I shall ask when I go in next week why they are removing all the lymph nodes rather than just those three. I should have asked before when I had the chance but I didn’t think. In fact like an idiot I didn’t ask anything.
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My goodness you’ve had every treatment going. My consultant said they hadn’t decided yet whether I’d have radiotherapy post-op. I’d rather have a gap in between so I can recover from one thing before starting another if that is an option. It seems to me having breast cancer isn’t much different to having a full time job. Appointments, tests, ops, treatments, checks, mammograms stretching out forever into the distant future.
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@magl It’s a tough club to be in as you say appointments tests , scans when you look back after all the treatment surgeries etc you do wonder how you found the strength to get through it all , but you do xx
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At the moment I’m looking forward to looking back on it. 
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@magl they are always going to remove all of the lymph nodes as they need to be sure there none cancerous left and of course histology will provide the results…noone is going to have just 3 removed never works like that…as I mentioned I had 34 removed…when I asked my surgeon she told me that she tried to remove as many as possible under the armpit but maybe she removed some that she wasn’t supposed to towards the collar bone and neck…you don’t want any cancerous left and the ultrasound is not a very precise tool as they can be hiding…
Re lymphoedema: no matter how many lymph nodes removed there is always a chance to develop it…as everything has been disturbed and it’s just a matter of when not if…
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@MistyK could please share with me the research article you found about the 20% chance of developing lymphoedema? I would very interested to read it…
@mun4o I was lucky after node removal year on still numb but no lymphoedema
But I had bad ulceration after mastectomy had to have implant removed chest debridement and left flat on that side bad scarring could have surgery eventually to rectify but would be 6 hour surgery not strong enough yet , so there’s always something but on the positive side I’m cancer free at the moment x
I looked that up. It’s on the Cancer Research website… “1 in5 (20%) will get Lymphoedema”.