I am already registered on here because I was diagnosed Stage 1 BC in July 2007.
I am posting on behalf of a friend now, whose mother has just been diagnosed with Stage 3b breast cancer and he has been asking me some questions about this type of cancer. All he knows is what his dad has told him… that it’s Stage 3b and is the worst of the Stage 3 breast cancers.
After doing some searching on the net, I have found a couple of sites that refer to a Stage 3c, is this a recognised stage in the UK? I’ve also seen that Stage 3b is referred to as IBC.
His mother has been offered the choice of chemo first before surgery or chemo after surgery… what is the current concensus on this? Personally, I would have thought chemo first but would hate to advise this if it is wrong. If she has chemo first, she will have 8 sessions over 4 months then surgery
He has asked me to start this discussion as he wants to know as much as possible about it, the full facts,even the bad bits. This is what he emailed to me…
QUOTE. Ask what sort of questions I need to ask the doctor, what sort of things my mum must think of when deciding about whether to have chemo first and then the op etc and what sort of support we can all give her etc.
Also be honest with me about the bad sides - I just want the facts, even if I might not like what I hear.
So I guess the sort of questions he needs answers to are…
What will chemo be like?
How long after chemo finishes is the surgery done?
Is there the likelihood of chemo/radiotherapy after surgery?
Stageing is quite complicated and there are several different stageing stystems in operation which overlap. Yes some stageing categories have a stage 3C (when cancer has spread regionally but not to distant sites).
IBC (inflammatory breast cancer.) is indeed the breast cancer which is usually deemed to have the worse prognosis. Some doctors automatically stage it at Stage 3b or Stage 3c, some at stage 4 (incurable.)
Neo adjuvant chemotherapy (chemo before surgery as opposed to adjuvant chemotherapy which is after surgery) is usually offered to people with large tumours/and/or poorer prognoses. Two reasons for neo adjuvant chemo (a) to shrink tumour so breast conserving surgery may be possible…though note IBC doesn’t present as a distinct lump…and b) so oncologists can assess how effective the choice of chemootherapy is…and switch to a different chemo if its not working. Statistically the survival rates for neo adjuvant and adjuvant chemo seem to be the same…but oncological opinion would generally support neo adjuvant for reason b) above.
Yes you can have chemotherapy before and after surgery. I did. I had surgery about 2/3 weeks after my last of 6 neo adjuvant chemos. I also had radiotherapy after surgery (this is usual with stage 3 cancers). Side effects of chemo vary greatlyfrom person to person. No one likes chemotherapy though most of us agree its ‘doable’. For me nausea and sickness were the biggest fear but this was controlled with anti emetics (which are reallly good these days) and I’ve never been sick on chemo. Exhaustioon for a few days each cycle is my biggest chemo side effect and i find it horrible when it happens but you have good days during chemo too.
I don’t have IBC…have just gathered lots of information about breast cancer cause I’m one of those information seeking kinds of people.
One other thought…sounds like your friend is an information seeker too, but his mother may not be. Not everyone wants to know as much as I do about the disaese. Tell him to remember that she’s the boss of her own disease, and he has no particular rights to demand information from her oncologist unless she wants it. A good oncologist always lsitens to their patient and tells as much as they think they can and want to hear.
I’m just an amateur so check out everything with reputable charities and the medical team.
best wishes
Jane
PS There are some specialist sites for IBC but can’t remember them right now. Your friend should easily be able to find on a google search.
It is very odd that this lady has to choose when to have her surgery and chemotherapy. I think I’d be asking to see another oncologist/consultant. We are NOT qualified to make these decisions.
You’ll find a definition of the stages/grades if you go to the Cancer Research UK site, it has all sorts of detailed information. CancerBackup is also an excellent source of information.
People usually recover quite quickly from surgery but might take a bit longer to get over chemotherapy. People who have chemotherapy first are sometimes having it in that sequence to reduce tumour size to make surgery more manageable. In a few cases, very few from what I can see, it can mean having less major surgery. Your friend needs to understand exactly why they are offering her the options. When I asked my oncologist why I wasn’t given the choice of chemotherapy first he just said that is how they do it there - modus operandum I suppose. But that doesn’t help you/your friend.
Please consider using the Help Line on offer through this site as you can be connected with qualified nursing staff who know much more than we “amateurs” who do our best.
It is not unuusual or odd to be offered a choice about neo adjuvant or aduvant chemotherapy. It is good practice to offer this choice for certain kinds of tumours. The consultant should of course explain the advantages and disadvantages. As I said in my post above the statistical odds are equal.
I think its a good idea to contact a cancer Helpline so an expert there can explain why some people are given this particular decsion to make.
I was dx with IBC in Oct 05.
I had chemo before surgery, (mastectomy), followed by rads.
I am not an information seeker, I know what I know because I have gone through it!
I’m currently being treated for skin mets but am otherwise well and back working full time. If your friends
Mum is dx with IBC I will be happy to explain more about my stages of treatment.
Just a thought… although IBC is often staged 3b, not all stage 3b breast cancer is IBC. I wasn’t completely sure what your post is saying, so if you could clarify for us whether the diagnosis was 3b, or 3b and IBC, that would help with advice etc
Hi Spooks,
Just to add that staging is not commonly used in the UK anymore according to my oncologist - i found it very confusing when doing my research. You are usually given a Grade. But other information such as the oestrogen receptive status and HER2 status are also often equally important. I can’t agree with the other people commenting so far - please have your friend phone the helpline; they are excellent and they are the ones who can offer real advice. It can be a minefield; the more you read, the less certain you become, the more you need to read. And, crucially, every person’s case and prognosis is unique.
Best of luck to your friend, you must be a great friend, and his mother,
Liane
Liane, I think oncologists / surgeons all have different views on staging / grading. I have a copy of the letter my surgeon sent to my GP and it states Stage 1 in the diagnosis box. I also found it very confusing when I saw all the other jargon / abbreviations in the diagnosis box, but being a person that has to know, I had to find out what it all meant… luckily, I found a site which explained what all the abbreviations meant.
My ‘friend’ is only someone I have known for a few days. He started a thread on all places, a forum for Liverpool football club fans asking if anyone had friends, family with BC or what sites to visit about BC… so I told him to email me and I’d try to help him the best I could.
Because he now has a little more knowledge about Stage 3b BC and treatment, I think he’s more equipped now to ring the helpline.
My pathology report, after WLE and total axillary removal, stated IDC stage 2, grade 2. I didn’t ask then, nor since, what the “stage” meant as I had a rather arrogant Onc who did not like being asked questions. From what little I know the grade is more important than the stage (I think there is a technical explanation for stage and grade somewhere on the net) and whether the tumour is ER positive or negative. My PR was not done for some reason. HER2 is also an important indicator as Herceptin is available to all HER2+ patients. HER2 testing was also not done at my hospital 5 yrs ago, but when I went privately my Onc said even if I was HER2+ he would not prescribe Herceptin as he said it has to be either given alongside chemo or within a year. Luckily, I went ahead with the test anyway, for my own piece of mind, and thankfully was negative.
There is a dedicated US forum for IBC where the ladies are very knowledgeable. However, some of the treatments, chemo and tumour markers, may not yet be available in the UK The site has ibc and support in the title, so if you google it you should find it. Such a pity that we are not allowed to post valid, supportive URL’s. BCC are doing us all a disservice in preventing us from sharing knowledge that can be vital. MD Anderson in Houston, Texas now has an Oncologist who only deals with IBC, Dr. Cristofanili (sp?) and is in charge of a research programme as well as seeing patients in clinic.
I found this from searching on the net from a UK site…
“Grade” of cancer cell growth: Patterns of cell growth are rated on a scale from 1 to 3 (also referred to as low, medium, and high instead of 1, 2 or 3). Calm, well-organized growth with few cells reproducing is considered grade 1. Disorganized, irregular growth patterns in which many cells are in the process of making new cells is called grade 3. The lower the grade, the more favorable the expected outcome. At the same time, the higher the grade, the more vulnerable the cancer is to treatments such as chemotherapy and radiation. Therefore, women with a “high” or “grade 3” breast cancer can also feel hopeful about treatment.
From the diagnosis box in the letter my GP received which I have copied below, I have more or less discovered what all the abbreviations mean now except struggling a bit to find out what NPI 2.5 is. I hope I have assumed right.
Carcinoma left breast - T2 (25mm) = size of tumour (the higher the T number, the larger the tumour and/or the more it may have grown into the breast tissue.
G1 = Presumably the Grade
N0 - (0-5) = Node involvement was 0 out of 5 tested (means nearby lymph nodes do not contain cancer)
M0 = There are no distant metastases
Stage 1 = Stage 1 cancer
NPI 2.5 = Prognosis good ???
ER+++ = Strong estrogen receptors
PR+++ = Strong progesterone receptors
HER2 neg = Not HER2
Only thing I can find on NPI is… which can only be done post-op is something called Nottingham Prognosis Index
Yes NPI is Nottingham Prognosis Index…its a system doctors use for deciding whether statistically you have a good or not so good prognosis. 2.5 is certainly good! All cancers are different and yours certainly has good prognosis.
Spooks,
I have been diagnosed with IBC recently and was told that you cannot/must not operate first - you have to have chemo first - I am having 8 sessions of chemo and then a double mastectomy even if there is no evidence of any cancer cells after the chemo! My consultant said that operating at the first stage would disturb the cancer cells (IBC is not a lump situation) and cause it to spread. I also understand IBC is quite rare - if your friend’s mum was diagnosed with BC then it is just BC and not IBC but that question could be asked. Hope for the best for you and your friend.
penn, thanks for that, you have answered what’s been confusing me I think… I was reading it that stage 3b also included IBC.
Stage IIIB
This stage describes invasive breast cancer in which a tumor of any size has spread to the breast skin, chest wall, or internal mammary lymph nodes (located beneath the breast right under the ribs, inside the middle of the chest).
Stage IIIB includes inflammatory breast cancer, a very uncommon but very serious, aggressive type of breast cancer.
My friend’s mum definitely has a lump, a fairly large one from what he has told me, so in essence going from the above descriptions, his mum has invasive breast cancer in which the tumour has spread to the breast skin, chest wall, or internal mammary lymph nodes.
penn…I wish you all the best with your treatment and everyone else who has replied on this discussion.