I am very new to my diagnosis and now after my Chemo specialist appointment I am even more confused as to whether to have chemo - any thoughts on this would be appreciated. My breast cancer pathology is: multifocal Gr 2 infiltrating carninoma, no special type - 18mm & 8mm lying 8mm apart, no node involvement, DCIS present, Hormone receptors positive, HER2 negative, clear margins. I've had a lumpectomy and sentinel lymph node biopsy. Now, I've been told that my 10 yr prognosis with no other treatment other than the lump removed is 84.2% using the Predict Tool, Radiation & hormone therapy would add 2.8% Chemo would only add 2.3% to that - maybe. Now considering Chemo was never mentioned in my initial specialist appointment, (radiation & hormone therapy were) I am having a hard time coming to terms with the addition of chemo to the mix.It has now been left up to me to make the decision on whether I should have chemo or not. The chemo specialist wouldn't say one way or the other. My thought line (before the pathology results) was if I had the cysts removed, clear margins and my lymph nodes are negative, I wouldn't need chemo and it was never mentioned. I understand now that the cancer may of already sent out nasty stuff to the rest of my body to lay dominant. On paper it seems such a small % as to the reason to have chemo, on paper I have read all the side effects and what to expect, but as everyone is individual this has only helped to even confuse me even further. And the even longer term effects can't even be forseen or considered. Does it really come back to peace of mind, or are there any other considerations I haven't thought of as I am so new and am finding it hard tap into resources. I may be grasping at straws but any imput would be welcome. I do apologise if the is a common topic here but being new I thought would put it out there for myself. Thanks,

It is the initial report I would guess as it is the first one post op. Maybe I will get more info later, I won't worry about it too much yet, ta

Sounds entirely up to you if you have chemo or not but to cover themselves it has been offered. I had the chemo and was offered radiation as an option. I chose not to have the radiation as I had a single mastectomy and the benefits were low.I am a 2yr survivor and still on Tamoxifen. No cancer is evident at this time.

Hi there @Lea-AnneD , specifically responding to your "on paper it seems..." portion of your post. Back in the distant past, I used to be a very active skydiver..1634 jumps. If an instructor was to say to a first jump student that there were two choices of parachutes...one had a reserve and one didn't, just the main. He might have then explained that the one with the reserve was much heavier and much bulkier. The one with only the main was ever so much easier due to the fact that there was only one. He might then point out that 99% of the time, jumpers never had to resort to their reserves and so in his own personal opinion, they were a bit of overkill. Which would you choose? I know for a fact that on the only reserve ride I ever had, with all those jumps, I was as happy as all f**k for that reserve. I had had to pay a master rigger to check and repack it every three years, but it was worth every dollar. In this whole cancer saga, for myself, I've continued with the same mindset. One or two percent sounds like such a small margin, but really it is quite large. If parents of a primary school with 1000 students were told that a particular medical treatment would prevent 2.3% of their children dying of some terrible disease, that would be 23 precious children, I'll bet all the parents would choose the treatment. I've had terrible side effects from my chemo, but I don't regret having had it. I would hate for it to have gone to stage 4 (and I know it might still, there are no guarantees), and been left with the thought of ...if only I'd had the chemo, I might not now be in this position. Personal thoughts and choice. Sending a big hug.

It's a tricky one isn't it. 2.3% doesn't sound like much on paper. 90% of women survive 5 years with current treatments. Trouble is we don't know if we are in the 90% or the 10%. That's where the lotto is. I chose mastectomy over lumpectomy due to my concerns of recurrence in that breast. Even though most women don't have it...mine was detected in a mammogram 5 weeks before I found a lump. I was worried it could return and not be found early enough. Same as I chose to have the other breast removed. My Aunt had a new primary in her other breast and didn't survive. My sister died from breast cancer. I had this reality with me at diagnosis.I had chemo and it was very difficult. I also had herceptin and had to have it stopped early due to issues. Would I choose differently now? No.My feelings were that I had one shot at eradicating this cancer. If it returns now it is stage IV most likeky. I didn't want to get 2 years down the track and have regrets...regrets like I wished I'd given it my best shot. It's a personal choice. No decision is wrong but you have to feel comfortable with the decision so you can get back to the business of living, not just being scared of return. Once you feel confident with that hopefully it's all smooth sailing for you. Kath x

Thank you lades for your comments, all your analogies are so valid. I'm still struggling with what was on my pathology that put chemo on the table when it was never mentioned before. Are they really just covering all the bases. I really need to reach deep inside myself and decide would I be comfortable with the decision if i decide not to go ahead. I have always considered myself to be a fit and healthy 56 year old. Eat well, weight train, etc etc.... guess these days its just not enough. Hopefully this will help my body with the side effects if I go ahead. I am at the stage where I am starting to realise how naive I was in the beginning. Now it's all starting to sink in. Thanks again

New Diagnosis - now to decide on Chemo

23 Replies

brightspace
Member
8 years ago
Hi leanne ..standard therapy after lumpectompy is for chemo
perhaps reasonfor stage not being given is that it is DCIS which is often labelled as precursor to bc and path often gives this as stage O
Also reason for chemo is that yours is infilterating so it has gone beyond the milk duct. Tis the factor that optionfor chemo. It is rare but sometimes microsize is not picked up inlymph ..so other therapies are required such as AI tamifxoen or letrozole
All the best with treatment
B
Brenda5
Member
8 years ago
I wasn't too concerned about the grade or stage, just the word Aggressive. By the time they did the mastectomy on one side it had within a couple of weeks past the biopsy gotten in to the sentinel node when no scans had even picked that up.
steplightly
Member
8 years ago
Hi Lee AnneD I had similar to you Lumpectomy and sentinal node biopsy When my results came in it was 11mm idc some dcis around clear margins Er pos pr- her - No nodes involved Result of specialist team discussion of pathology Radiation and hormone inhibitor recommended Suggested discussion with med onc for chemo Had that with chat about % with or without it and decided no to chemo as very little difference. It is a personal choice. It is not easy as there us a whole new language to learn while digesting the initial diagnosis and recovering from immediate treatment. Wishing you all the best with your decision making
Lea-AnneD
Member
8 years ago
Yes, I agree with you there, bring on tomorrow so I can have that chat and thanks again everyone for your input and help.
iserbrown
Member
8 years ago
I hear you but as others will attest that's the initial suggestion. Once pathology comes through after surgery the picture is clearer for the suggested treatment plan. A talk with the breast care nurse will help put things into perspective.
Lea-AnneD
Member
8 years ago
Iserbrown, Maybe just maybe if the surgical specialist had of said having a mastectomy would possible mean no chemo, I would of given it a thought, but when is was only offered as another option, no other explanation I was in too much shock to even consider it, especially when he said - lumpectomy, radiation, hormone therapy and thats it.
iserbrown
Member
8 years ago
It's personal choice where all the options are laid bare. I was told early on you may not need chemo. When I had my Oncology appointment I was told the same 2 to 3%. I had a mastectomy and asked what other options were on offer. Onc said if it was 8 or 9% he would've pushed me into chemo.
Trust in the medical team is paramount. My Onc was happy with my decision.
Lea-AnneD
Member
8 years ago
I agree Zoffuekm, I really wish he hadn't shown me the Predict Model. My sister was with me and she was grasping things a little better than me and I could see in her eyes she thought it was a no brainer, I had to have chemo. Then I spoke to my son who lives overseas and he thought it was like using a mattock to drive in a small nail. So yes, it's my decision but being a numbers person I like to back myself with data and numbers. I am reaching out the a cancer nurse tomorrow so maybe I will get things into better perspective then.
Lea-AnneD
Member
8 years ago
It is the initial report I would guess as it is the first one post op. Maybe I will get more info later, I won't worry about it too much yet, ta
Zoffiel
Member
8 years ago
It's a hellish situation @Lea-AnneD. They have to inform you of your options, and I guess none of us would have if any other way. That doesn't mean we want to play an involuntary game of Russian roulette. Ive had a bit of research experience and when I looked at the Predict model I had a 'WTF' moment; that's the best data set we have? Really?

I've done this twice and chemo for me earlier this year gave me (according to Predict) a 5% improvement on my chance of survival over 10 years. Having been down that track once, I did not want to go back for another go. Then my friends and family got involved. The pressure was relentless. In the end it was just easier to do it than to go into some sort of self imposed witness protection program and disappear to Siberia where no one could tell me how disappointed they were that I hadn't done everything I could. I should have shut up and told them it wasn't an option (if I'd told them anything at all)

Tough times Lea-anne. Try to follow your heart and if you do make compromises do it with as much self care as you can. Good luck. Marg xxx