Breast Cancer prognosis

[exeng]

Good evening to you all.

I'll keep it as short as I can. My Wife had a mammogram - this showed very slight evidence of a small tumour.

A needle biopsy was performed which gave the results of 'pre cancerous cells'.

A lumpectomy was performed which was sent for biopsy. The biopsy revealed that in fact some of the tumor was in fact cancerous.

A sentinel node removal was carried out which (using the OSNA technique) showed cancer cells were present. Then under the same operation a number of other lymph nodes were removed.

My wife is now scheduled for a full body MRI scan and awaits the results of the biopsy carried out on the removed nodes.

At each stage during this process my Wife was told that there is only a very slight chance of 'real' cancer cells being found. As is evident they have been found which has apparently surprised the consultant.

The tumour was initially described as a 17mm grade 1 apocrine cancer with surrounding intermediate grade DCIS. The invasive component shows no lymphovascular invasion and it is negative for oestrogen, progesterone and HER 2 receptors. We were told that radiation treatment would follow.

Since that letter describing the cancer the breast cancer Nurse assigned to my Wife has told me that because of the findings in the sentinel node operation the cancer is now being described as grade 2a. Radiation treatment will follow and she told me that my Wife should be prepared for the possibility of chemotherapy.

The biopsy of the nodes will apparently reveal the extent of the amount of cancer cells and therefore I imagine the likelihood of dispersal to cause secondary tumours. If there are secondary tumours the cancer nurse told me that these were basically incurable. She also told me that the MRI scan will only show developed tumours - which makes sense.

We await the results with anxiety to say the least. To be honest my Wife is in a very depressed state which is understandable - all I can do is try to support her and pick up the pieces as we go on.

Can any expert here tell me what we can expect from here? I understand that none of you have a crystal ball and that predictions of any cancer development are difficult as each individual cancer case is essentially unique.

I am just trying to gain an insight as to a likely outcome from this terrible disease. If I hear bad news from you then it is likely that I will keep it to myself for now - any possible good news I will pass on so as to keep my Wife's spirits up.

Obviously in my dreams I would like reassurance that everything is going to be 'OK', but I really would like an appraisal from experts of what the real likely outcome will be.

I understand there is no way to absolutely predict an outcome with any absolute certainty but I would appreciate it if experts could give their opinion on 'likely' outcomes.

Many thanks in advance


Regards
Exeng

[TOWTEAMBASE]

A very hateful illness, I wish you and your wife all the luck in the world

TTB

[exeng]

Thanks TTB,


Regards
Exeng

[obgraham]

Exeng:
First off, I'm sorry to hear of your beloved's illness. It's never good news, and usually comes down on folks like a ton of bricks.

That said, from what you outlined, I believe you are in an excellent care system, with access to very up-to-date investigation and treatment plans. I urge you to have confidence in their advice, seek a second opinion if you think it wise, and join with them in forming the approach best for you.

No doubt others closer to your location, and with more specific treatment experience will chime in here. But let me say that with over 30 years in the field of women's health, I dealt with literally hundreds of women facing the breast cancer issue. Results nowadays are vastly better: that's because of earlier and more precise diagnosis, and the ability to tailor the treatment to the individual case as the testing proceeds.

This is a disease which often defies prediction. You've already seen that, and your surgeons have proceeded as the results indicate, each step of the way. What they are trying to determine now is, can this case be treated by relatively local means (surgery, radiation), or is adding wider therapy (drugs, chemo, etc) the best way to go. My personal opinion, were it my family, is that standard treatment is radiation and chemo, and the therapists have to convince me, by tests, experience, and logic, that it is safe to skip some part of that triad. Indeed, many don't need the whole bit -- but right now you need the full gamut of testing to make that proper decision.

Best wishes to you both. Let us know from time to time how you are doing.

Graham, MD

[Cough]

Exeng,

Really feel for you. My mum went through it quite a few years ago in almost the same way as your wife. With each procedure that was carried out came with it more info for the doctors and the risk slowly went up. She underwent several ops, chemotherapy and radio and came through it. I of course wasn't at home much (whenever I could) but I know there will be some dark days ahead. Look to that light at the end of the tunnel and I'm sure your prospects will be good...

All the best mate!

[Tableview]

Exeng : I cannot offer any real knowledge on this, only sympathy and my hopes that your wife will respond well to whatever treatment the professionals recommend.

I do know that a positive attitude is very important, family support and love can work miracles.

My best ........

[homonculus]

Extent

I agree that from your post it appears you are in a first world centre despite my initial concern that you were in a part of Africa that could not provide advanced care. I would be interested to know which country you are in because in some parts of the continent we do see mirroring of western medicine and the availability of advanced care but perhaps lacking some of the training and experience of the west

So it might well be worth getting a second opinion if you are able to do so from the UK or USA. In some cases this might be possible without a physical consultation as you appear to have comprehensive reports. If it supports your local specialists all well and good. If it advises some tweaking of care I would hope your specialists would take it with good grace

Good luck

[exeng]

My Wife is being looked after in the UK under the NHS. (Frimley Park Hospital)

I work in Africa (although on unpaid leave at the mo), hence the reason for my location on my profile.

The standard of care has been excellent and I have no reason to think that any decisions so far made have been anything other than sensible. All the consultants and nursing staff have been very understanding and compassionate in all their dealings with my Wife - they obviously take the emotional side of this disease very seriously.

I'll keep you posted on developments.


Kind regards
Exeng

[fernytickles]

Exeng,

Sorry to read your news.

Having been thru' a couple of spooks myself, and watched my mother deal with bladder cancer, what we've learned is don't always just meekly accept what you are told. Be prepared to question & query. When she was first diagnosed, a friend told my mother to "be prepared to fight for what's right for you". He wasn't wrong. She was initially treated with the NHS then went with BUPA. Whichever service, be prepared to question decisions & move if necessary.

Here's hoping that your dreams do come true, and everything turns out "ok".

[gingernut]

Hi Exeng,

I can't even imagine how you are both feeling at this moment.

Unfortunately I'm not expert enough to offer specific advice, but it may be worth talking to the Macmillan nurses for further advice about the uncertainties you and your wife are naturally worrying about. The term "Prognosis" is often quite subjective, and goes beyond a grading of the tumour and it's potential spread.

Don't underestimate the power of the support you are giving to her right now. You need each other now, more than any other time. Please keep us informed:)

[exeng]

I have to say that at the moment the emotional side of things is the most difficult part of it for my Wife and I.

Today I have been on a 'downer' inwardly where as my Wife seems to have been much more optimistic.

Just who is supporting who I wonder?


Kind regards
Exeng

[HEATHROW DIRECTOR]

Exeng. It is very difficult to be positive and supportive when your loved one is unwell. My wife had a neurological disease and the fear of the unknown made me terribly depressed for several years and she supported me, bless her. Now the guilt is overwhelming.

Be encouraged. The wife of a long-term friend of mine has had breast cancer three times over about 15 years . She is in her 70s and hail and healthy and recently got the "all clear".

Good luck - you and your dear wife are in my thoughts.

[Taildragger67]

Good luck to you and your wife; this will test both of you.

Not being a doctor I cannot add to what Dr Graham has previously posted. However as also posted, there is also a psychological battle. There are loads of support groups and though many of those groups' members may not survive years of cancer, there are many, many positive stories - at every stage - and I've seen the strength drawn from membership. So please encourage your wife to consider support groups.

I've observed that keeping busy is also very important - an active social life, getting out of the house, having something to achieve every day, etc.

Don't be afraid to ask for help yourself - go for a drink now & then with your mates and have a cry. You'll need it.

And do your own research - as one doctor said to me, there is so much going on in the field that no doctor, however expert, can hope to be on top of everything. Do your own research and be prepared to (respectfully) ask questions. A good doctor will welcome patient participation as it shows the patient is an active participant in their care. It may also help to prepare you for different eventualities and not be taken by surprise.

Again, good luck and thoughts are with you.

[The Invisible Man]

Hi Exeng

Please check your Pm's

[VH-MLE]

Hi exeng,

Firstly, I am very sorry to hear of your news and hope all goes well with your wife's treatment...

Having been in a very similar situation to yourself nearly 8 years ago, I can say with 100% certainty that your wife needs your total support every step of the way in the weeks and months ahead. It seems very clear she has it anyway but just thought I'd reinforce it!

I can also say with 100% certainty that YOU need to take charge to a significant degree here to work out what is best for her. Of course you need to listen to your doctor's advice, however there may be occasions where you may not feel comfortable on a particular course of action (or inaction) - my perception was that you tend to get treated as a number or statistic rather than a loving wife & mother so don't be afraid to ask questions or seek second opinions if you're in any doubt. I eventually worked that out a long way into my wife's treatment after some less than ideal decision making by a couple of her doctors.

Lastly, there is some great advice and support on this website and have a lot of respect to the comments made by Gingernut and obgraham.

Once again, good luck and I look forward to hearing of a good outcome in due course...

Cheers.

VH-MLE

[exeng]

Good Evening All.

Firstly may I thank all of you for your kind words of support.

Today we met with the Oncologist. the Surgeon and somebody else who was very important! A stressful day so I can't remember everything!

The long and short of it is that although cancer was found in the sentinel node no evidence of cancer was found in the other 9 nodes removed.

The specialists say there is very little chance of the cancer having progressed to secondary tumours elsewhere.

Radiation therapy will be given for 3 weeks to the affected area (only the breast and not in the area of the sentinel node)

The cancer my Wife has is apparently quite rare. An Apocrine type, but a sub species there of. Seemingly less than 2% of breast cancer patients suffer from this type.

The specialist thought that chemo was not required. However he said he would confer with a Professor Johnson of the London Royal Marsden Hospital to ensure his recommended treatment is correct.

We both have a massive cloud lifted from us although there is still a way to go.

Thanks again for your support.

Kind regards
Simon Robinson (Aka 'exeng)

[baobab72]

Although i am not a doctor,i do love my wife and just the thought of having to face something like that makes me cringe!
I do agree that you have a ton of things to take care of and that you need to show your beloved one how much you care about her and that you are more than willing to share that burden, you would carry yourself if you could, but let me remind you that for the sake of you both it is Imperative that you look after yourself cos if you forget to do so, you might run out of energy and trigger a very subtle yet devastating process.

I really wish you all the best from the bottom of your heart

Baobab

[HEATHROW DIRECTOR]

Simon.... I am so very, very pleased for you both. May you enjoy many more happy years together.

[The Invisible Man]

Hi Simon,

So happy for you and your wife. Sandra went through her radio therapy without any problems other than a little "sun tan " on the treated area.

Keep positive

Regards

John

[fernytickles]

Inspite of what she is experiencing, your wife is a very fortunate lady to have a husband who is so supportive. Delighted to read your update, & I hope it is all straightforward from now on.

[fernytickles]

Inspite of what she is experiencing, your wife is a very fortunate lady because she has a husband who is so supportive. Delighted to read your update, & I hope it is all straightforward from now on.

[gingernut]

Today we met with the Oncologist. the Surgeon and somebody else who was very important! A stressful day so I can't remember everything!

you 'aint alone there :-) There's loads of research to say that we only remember about 30% of what the doc tells us.

Our oncologists tape record the consultation and hand the tape over to the patient and family. I'd be a little overwhelmed to actually ask them to do that if they've not offered, but the MacMillan nurses are usually a good source of help, and the GP (eventually) should be a focal point of all information.

Keep us up to date Simon.

[tenretni]

Exeng,

I have had personal experience with this disease ( mother and sister).

My research over several years has yielded the following.
There are 5 molecular sub types of breast cancer.
The majority of these are estrogen/progesterone receptor positive.

The various subtypes are different combinations of estrogen progesterone and Her2 status.

From what you describe, your wifes cancer is a triple negative subtype.
Unfortunately these are considered to be the most aggressive types, especially in premenopausal younger ( less than 40 ) women making up about 30% off all breast cancers.

Cancers are primarily staged with reference to primary tumour size, lymph node status, and hormone receptor status.

From a prognostic point of view the tumour size is very important along with the number of positive lymph nodes.

The good news is that a stage 2a cancer is still considered to be an early cancer.

While hormone positive cancers can be treated with tamoxifen or any number of aromatase inhibitors ( for post menopausal women) there are no real options for triple negative other than your standard chemotherapy regimens surgery and radiotherapy.

THE FOLLOWING IS VERY IMPORTANT.

Cancer is now thought to be a disease driven by cancer stem cells. Research over the past 10 years is yielding a lot of evidence for this theory. You can google cancer stem cells and read up on this important topic.

In a nutshell all current treatments attack the rapidly dividing cancer cells. However the cancer stem cells which give rise to the vast majority of tumour cells are resistant to chemo and radiation.

Think of them as the queen bees. They have been identified in many major cancers.

Researchers are now trying to find ways to kill these particular cells to effect better outcomes if not cures.

Doctors like Max Wicha from the Michigan Cancer Centre and Dr Clark in the UK are just a few of the people looking at this.

I believe that there are clinical trials targeting these cells.

If I was you i would be trying to enroll my wife in such a trial.

She should receive the standard radio plu chemo plus a drug targeting these cancer stem cells.

[obgraham]

Exeng:

The situation is developing just as I previously outlined: your wife's condition is being investigated step by step, and a treatment protocol is being developed specific to her condition, with outside consultations as indicated. You are in good hands where you are, and I encourage you to ask your questions, then follow the advice you are given.

And I wish you both the best in the future.

There are always, I repeat ALWAYS, self styled experts ready to prey on the anxieties of the patients and their families, who will try to convince you that they, and they alone understand all there is to know about conditions such as cancer. Some of them are highly educated, and some of them sit by a computer in their underwear to push their ideas. Ignore them all.

[Mac the Knife]

Exeng - sorry to hear about your wife's diagnosis. She seems to be in excellent hands and overall her prognosis is good.

I deal with a lot of breast cancer patients - on the reconstructive side.

Can only echo what obgraham says: Listen only to qualified experts who deal with this disease every day; do not listen to people who advocate strange diets or visualisation therapy or little silver bells or any number of anecdotal unproven nostrums.

All the best to both of you.

Mac

:ok: