Inoperable? Tumour shrinking

Butterpie · April 2014

hi all.

Whilst in hospital having our second child my wife was recently diagnosed with inflammatory BC stage 4. Metastasised to liver, femur and most vertebra. After the initial consultation we were told by our oncologist she would be having 6 sessions of chemo at 3 week intervals along with herceptin and pertuzumab. then continue with herceptin and pertuzumab for the rest of her life. We were also told by the cancer nurse that it was too late for surgery.

Is this because removing the primary tumour allows the secondary tumours to grow more quickly?

After 1st chemo session, breast tumour shrank from 12.5cm to 7.5cm

After 2nd chemo, it shrank 1cm and after 3rd session another 1cm, so now 5.5cm

The CT scan after 3rd session showed largest liver tumour shrunk more than half and no longer any evidence of disease in lymph nodes.

Is it correct that surgery is no longer an option? I wonder what other treatments might be available. We are in UK.

My wife doesn't want to talk about prognosis as it is too much to cope with so the onc is reluctant to discuss with me. From everything I've read the outlook is likely to be 2 or 3 years or less.

We are reading Jane plants books and avoiding all diary and hoping desperately we can beat the odds. Any advice much appreciated.

Big hugs and best wishes to you all

Travelgirl129 · April 2014

I have heard of mastectomies being done in these types of situations. I think you should get a second opinion! It sounds like your gut doesn't agree with what this doctor says and a second opinion may help guide you two in the right direction. Good luck and you sound like a wonderful husband!

RebzAmy · April 2014

Hi Butterpie

So sorry to hear this about your wife. I'm also in the UK and believe that you can in some circumstances have mastectomies even though somebody is stage 4 - you may have to really push for it though. I know there has been some debate in the past on other boards about the benefits of removing the breasts even if you're stage 4. Also sounds as if the treatment your wife is on is doing a great job which is very good news. Herceptin on it's own can work for a long time - it varies from person to person. The best thing to do would be to find one of the top cancer specialist hospitals such as The Royal Marsden or The Royal Free to get a second opinion.

I completely understand your wife not wanting to know about prognosis right now, it's too much for her to take in and handle. I certainly didn't want to know too much when I was going through diagnosis but everybody is different and some people want to know everything.

I know some people believe in taking supplements such as omega 3, juicing etc, low fat diets, I made sure I took Vitamin D, and took gentle exercise such was walking and got fresh air every day.

Wishing you all the best.

RebzAmy

Butterpie · April 2014

hi

Thanks for replies and kind words.

A second opinion sounds like a good idea. Not sure if I should ask our gp or our onc about that one. We are within traveling distance to Royal Free so I should look into that.

I'm sure my wife wouldn't want surgery if it didn't improve prognosis though.

I think there are also other treatments such as radiation and high strength chemo capsules activated by heat.

Good to know herceptin can sometimes work for a long time. I'm sure diet and exercise can go a long way to.

I guess the current regimen is working well but after the first chemo session yielded such good results, we expected it might disappear, yet the next two sessions showed only incremental improvement. Still, it's heading in the right direction

On and up

Bp

JaneB1 · April 2014

Butterpie,

So very sorry that you and your wife are going through this. I have heard that there seems to be a view with Stage 4 that since the cancer has already metastasized, removal of the cancerous breast isn't necessary. But I agree with others that a second (and even a third) opinion is in order. I would try to go to the best cancer hospital you can get to.

I have a good friend who was diagnosed Stage 4 at the outset (IDC not inflammatory). She wanted a bilateral mastectomy. Insurance was willing to pay for the mastectomy but objected to the prophylactic removal of the good breast. She was determined, however, and really pushed for the bi-lateral. Ultimately, she convinced her surgeon and together they convinced the insurer. She had the double mastectomy and implant reconstruction and is very glad she did it.

I am not an expert but I think my feeling in her situation would be the same as hers was -- I want the breasts gone now.

The best news is that she is HER2+ so she was treated with chemo and Herceptin. She has also been on monthly Herceptin for several years now and is doing great.

So, I would try to get another opinion or two about surgery. And, based on my friend's experience , the fact that your wife is HER2+ and therefore responsive to Herceptin is very encouraging.

Wishing you and your wife the best,

Jane

amarantha · April 2014

She is very lucky that the chemo worked so well and so fast. I bet they did not expect such astounding success !

amarantha · April 2014

P.S. From some things I've read, surgery is not considered an option when there are not safe margins, or cutting would spread the cancer. Or ... if the cancer is completely gone from the breast, not sure what the reason to cut it would be.

RebzAmy · April 2014

Really good to hear that the regimen is working so well even if it's slowed down a bit - hopefully the herceptin will keep it at bay or even to no evidence of disease (NED).

Some people have discussed on previous threads removal of the affected breast and lymph nodes in order to remove the actual original cause of the disease i.e. the main tumour as they believe it may give the body more of a chance to get rid of what started it all in the beginning but who knows.

Wishing you all the best.

Butterpie · April 2014

hi all,

Thanks again for your replies, really so much appreciated.

We saw our oncologist today and the primary tumour is still 5.5cm so no change since last chemo session. 1 more session to go after today. On the plus side the liver tumours have reduced more than 90% but are still too numerous and widespread for other treatments, though there maybe a possibility of SIRT treatment.

Our onc recommends a mastectomy due to the inflammatory aspect of the disease though this needs to approved by the surgeon as a lot of skin needs to be removed. He says we are not going to achieve pathological complete response before surgery. I was hoping we could as I believe this greatly improves outcome.

I did ask what the best ever survival he had seen for a patient in my wife's situation and he said he could tell me but I need to go away and think about if I really want to know the answer. The reply was the same when I asked if we could have another 4 or 5 years? Our ONC has treated thousands of patients over many years so that worries me.

The regimen has worked well given the gravity of the initial diagnosis but the prognosis isn't looking too optimistic. I suppose IBC and grade 3 tumour stage 4 doesn't bode well.

Good to hear from other folks on these forums who are doing well years after dx.

Best wishes to you all.

BP

Anonymous · May 2014

bp - glad to hear there are surgical options on the table

we (husband here) just got in the same situation as you: stage IV from the get-go, very large and invasive primary (initially suspected inflammatory but so far they think it isn't) and our first onc. kind of hinted that there was no point even discussing surgery. we went for a second opinion and oh my, what a difference this can make. second onc said we don't know how the body will respond but we will treat this aggressively and no option is off the table (including local control of the primary and ablation of the liver mets if they get them down to an operable size)

point is, we do understand this all depends on how chemo and antibodies will work (my wife HER2+ as well) and that no promises can be made upfront, but if you are asked to be strong and to believe, you don't want your medical team to give up on you right at dx time. I think you also want firefighters on your side so that all your energy can be devoted to yourself and your closed ones rather than to have to convince your medical team that you want treatment X and Y.

best of luck to you and your wife.

Butterpie · May 2014

Thanks for reply Orpheus

So sorry to hear you and your dearest are going through this too.

There seems to be some confusion according to our onc as to what constitutes IBC. I think from his point of view our dx is still defined as her2+++ BC. he believes if it reaches the skin it has an inflammatory aspect.

In our case there are too many small liver tumours to consider ablation which is why he suggested SIRT might be possible.

I agree it's good that surgery maybe an option for us now. You might also find, like we have that inoperable means unable to operate at that moment in time which is why they didn't discuss surgery with you.

Once the drugs kick in and hopefully the primary tumour shrinks, i think they will mention surgery

All the best

Inoperable? Tumour shrinking

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