Worrying time... Breast Cancer Concerns post treatment can anyone explain?

Rainbow Star

Hello. I'm new here, and I wonder if anyone can help explain something to me?

i am in the UK. The treatment I have had started with the discovery of a lump in my left breast. The lump was removed along with the surrounding tissue. This was analysed and I had DCIS to the edge of the tissue so I was told that further tissue needed to be removed for analysis. given the amount, I was advised that a mastectomy would be the best course of actioN, which I agreed. 

In in fact I had a bilateral mastectomy, with immediate reconstruction, but it was decided that I would have the 6 x course of chemotherapy before my operation. Due to my immune system this started in July and finished in late November. In January, I had the double mastectomy.

i was put on tamoxifen but it didn't agree with me and made me quite poorly, so I had monthly zoladex injections, which I couldn't bear so I had an oopherectomy (removal of my ovaries and tubes) as I had oestrogen receptive breast cancer.

i have just received a letter from my oncologist outlining my treatment and now I am worried beyond belief! It states that (post chemo) that 'analysis of the removed breast tissue showed residual cancer'. I thought that the chemo was given to kill my cancer? 

I called led the hospital and the oncologist, who speaks very poor English, i formed me tony 'chemo alone doesn't kill cancer cells and it's only effective as part of a  course of treatment'. So my worry is what if not every cell was removed with my breast? I take no medication at all, is this right???

i am 45 and was pre menopausal before my oopherectomy. 

Does this mean I am sitting on a ticking time bomb? I've been so positive throughout my treatment but today I haven't stopped crying as I am really scared that I am going to at the very least go through all of this again. I elected to have my right breast removed for that very reason, and I was told post operation that I made the right choice.

please, if anyone can help me please please message me. My oncologist can not see me for two months, which is her first available appointment. Honestly the care I have had has been minimal and nothing short of being another statistic.

xx

twnkltoz

I'm so sorry you're going

I'm so sorry you're going through this. If there any way to see a different oncologist?

Rague

Insist on getting answers that you UNDERSTAND!

Am I reading right?  You did neoadjuvant (pre-survery) chemo and then surgery. Any adjuvant (post surgery) chemo or radiation?

What was your original DX - DCIS only or with other type?  Node involvement?  HER2 status?

Chemo does not necessarily/always kill every cancer cell in the body.  A mastectomy  can not get every cell of breast tissue.  What does the letter say your TX will be?  Is it going to be adjuvant chemo and/or rads?

Lots of questions that you need answers to.  If you cannot understand the Dr, ask for his RN/PA/NP (or another Dr) to be there to explain so you understand.  Take a notepad and write down ALL your questions and make a second copy of them to hand to him to answer.  Also take your Smart phone, tablet or tape recorder and record his answers so you can review them later for better understanding of what was said.

I did neoadjuvant (4 DD A/C) which did not give a complete response (never expected it) but got it to from a 'lump', shrink it and give Surgeon  a good chance of getting it.  I did adjuvant (12 weekly Taxol) and then 25 rads.  Yes - there was IBC still present at surgery (expected).  It's been 6 yrs since DX, 5 1/2 yrs since end of rads and I am still here and living and loveing life - saw my PA 2 weeks ago and am still NED (No Evidence of Disease - the best we can hope for).

You really do need information THAT YOU UNDERSTAND from your Drs.  We can give our thoughts/experiences but only your medical staff can speak to you regarding YOU.

Winyan - The Power Within

Susan

 

LindenLea

Rague said:

Insist on getting answers that you UNDERSTAND!

Am I reading right?  You did neoadjuvant (pre-survery) chemo and then surgery. Any adjuvant (post surgery) chemo or radiation?

What was your original DX - DCIS only or with other type?  Node involvement?  HER2 status?

Chemo does not necessarily/always kill every cancer cell in the body.  A mastectomy  can not get every cell of breast tissue.  What does the letter say your TX will be?  Is it going to be adjuvant chemo and/or rads?

Lots of questions that you need answers to.  If you cannot understand the Dr, ask for his RN/PA/NP (or another Dr) to be there to explain so you understand.  Take a notepad and write down ALL your questions and make a second copy of them to hand to him to answer.  Also take your Smart phone, tablet or tape recorder and record his answers so you can review them later for better understanding of what was said.

I did neoadjuvant (4 DD A/C) which did not give a complete response (never expected it) but got it to from a 'lump', shrink it and give Surgeon  a good chance of getting it.  I did adjuvant (12 weekly Taxol) and then 25 rads.  Yes - there was IBC still present at surgery (expected).  It's been 6 yrs since DX, 5 1/2 yrs since end of rads and I am still here and living and loveing life - saw my PA 2 weeks ago and am still NED (No Evidence of Disease - the best we can hope for).

You really do need information THAT YOU UNDERSTAND from your Drs.  We can give our thoughts/experiences but only your medical staff can speak to you regarding YOU.

Winyan - The Power Within

Susan

 

Rague... your post has a lot

Rague... your post has a lot of abbreviations and medical language in it that I fear the OP will not understand as she is a newbie at this BC thing. You have excellent questions, but maybe you could restate them in simpler language? (No offense, I hopw, as I also did not understand why she was put through the chronology of events she described.)

Rague

Rague said:

Insist on getting answers that you UNDERSTAND!

Am I reading right?  You did neoadjuvant (pre-survery) chemo and then surgery. Any adjuvant (post surgery) chemo or radiation?

What was your original DX - DCIS only or with other type?  Node involvement?  HER2 status?

Chemo does not necessarily/always kill every cancer cell in the body.  A mastectomy  can not get every cell of breast tissue.  What does the letter say your TX will be?  Is it going to be adjuvant chemo and/or rads?

Lots of questions that you need answers to.  If you cannot understand the Dr, ask for his RN/PA/NP (or another Dr) to be there to explain so you understand.  Take a notepad and write down ALL your questions and make a second copy of them to hand to him to answer.  Also take your Smart phone, tablet or tape recorder and record his answers so you can review them later for better understanding of what was said.

I did neoadjuvant (4 DD A/C) which did not give a complete response (never expected it) but got it to from a 'lump', shrink it and give Surgeon  a good chance of getting it.  I did adjuvant (12 weekly Taxol) and then 25 rads.  Yes - there was IBC still present at surgery (expected).  It's been 6 yrs since DX, 5 1/2 yrs since end of rads and I am still here and living and loveing life - saw my PA 2 weeks ago and am still NED (No Evidence of Disease - the best we can hope for).

You really do need information THAT YOU UNDERSTAND from your Drs.  We can give our thoughts/experiences but only your medical staff can speak to you regarding YOU.

Winyan - The Power Within

Susan

 

TX (also can be written as Tx

TX (also can be written as Tx or tx) = treatment

DX (also can be written as Dx or dx) = diagnosis

RN - Registered Nurse; PA - Physician's Assistant;  NP - Nurse Practioner

DCIS - Ductal Carcinoma In With

IDC - Invasive/Infiltrating DuctaCarcinoma

IBC - Inflammatory Breast Cancer

Neoadjuvant chemo - chemo done before surgery

Adjuvant chemo - chemo done after surgery

DD A/C - Dense Dose Adriamycin and Cytoxan. These are done every 2 weeks. 2 chemo meds at are often used together.

Weekly - chemo that is done weekly.  

Rads - radiation

Chemo Dr/MO/Medical Oncologist - the Dr in charge of chemo treatment(s)

Rads Dr/RO/Radiation Oncologist - the Dr in charge of radiation treatment(s)

NED - No Evidence of Disease 

 

 

 

Rague

LindenLea said:

Rague... your post has a lot

Rague... your post has a lot of abbreviations and medical language in it that I fear the OP will not understand as she is a newbie at this BC thing. You have excellent questions, but maybe you could restate them in simpler language? (No offense, I hopw, as I also did not understand why she was put through the chronology of events she described.)

I just posted explaination of

I just posted explaination of words and abbreviations.    It wouldn't let me go back and edit.  Did I miss any?

Absolutely no offense at all!  I had posted some explanation (in parentheses) that to me seemed to be ones primarily associated with BC.  Some things seem to me like all would know - RN/PA/NP and DX/TX are a few that are not cancer specific.  I knew all these abbreviations long before IBC raised it's ugly head.  Will try to 'think better'  in the future - operative word 'try'.  You did bring up a good point - not just for me but many.

Winyan - The Power Within

Susan

 

 

 

ballerina06

Rague said:

TX (also can be written as Tx

TX (also can be written as Tx or tx) = treatment

DX (also can be written as Dx or dx) = diagnosis

RN - Registered Nurse; PA - Physician's Assistant;  NP - Nurse Practioner

DCIS - Ductal Carcinoma In With

IDC - Invasive/Infiltrating DuctaCarcinoma

IBC - Inflammatory Breast Cancer

Neoadjuvant chemo - chemo done before surgery

Adjuvant chemo - chemo done after surgery

DD A/C - Dense Dose Adriamycin and Cytoxan. These are done every 2 weeks. 2 chemo meds at are often used together.

Weekly - chemo that is done weekly.  

Rads - radiation

Chemo Dr/MO/Medical Oncologist - the Dr in charge of chemo treatment(s)

Rads Dr/RO/Radiation Oncologist - the Dr in charge of radiation treatment(s)

NED - No Evidence of Disease 

 

 

 

Susan, thanks for breaking

Susan, thanks for breaking that down. I forgot a few of those abbreviations.                                              

ballerina06

I'm truly sorry you had to go

I'm truly sorry you had to go through this battle. You have been very proactive in your treatments and please continue to do so. I was diagnosed with dcis in 2009 estrogen and progesterone positive. I had a lumpectony and 33 radiation treatment. 2010 a reoccurrence had mastectomy with lattisumus dorsal flap reconstruction. Originally, at a different hospital, I was told I didn't have to be concerned about cancer in that breast. However, I was diagnosed with dcis last year in the other breast and had a mastectomy. My new specialist at my current hospital was honest and straight forward to explain they can never remove all breast tissue only what's visible and that we have breast tissue in our colar bones, under our arms and in the middle of our chest but if  I keep my appts. do self exams, report any changes and continue to educate myself we can catch things early. We are a team. Unfortunately, no one can guarantee us anything. Always ask many questions and if you are not happy with the answers your doctor gives, get another one or have two if you can. I hope things get easier for you.

GlowMore

Hi Rainbow Star*

So sorry that you are so frightened but I certainy know how you feel.  You did not mention getting Radiation .....did you not have Radiation after your surgery and chemo?   I know that medical treatment in the UK is very different from here in America but surely if you are very frightened they must have somebody for you to talk with who can explain things to you more thoroughly.  Keep trying to get your answers.  I find it appalling that you can't see your Oncologist for two months....perhaps you need to call them back and insist on speaking to somebody besides the little appointment person....sometimes we just have to PUSH and EXPLAIN to them that we are FIGHTING FOR OUR LIVES.  Sometimes politeness must be left at the wayside.   Meanwhile I would urge you to consider all of the facts and realize that you have made many positive steps and done what was required....I am hoping that this report may have been poorly worded and that you just need to talk to someone who can explain the letter to you better.   Please let us know what you decide to do.  Does the UK have the Equivalent of something like what we have here in The American Cancer Society?  I hope they do and I send you Prayers for Answers and for Strength & Courage.  Fear is very debilitating and will paralyze the mind....  Love & Hugs,  Glo 

 

 

jane55ill

concerns post bc treatment

Hi!  my name is Jane.  im from illinois in the USA.   I had lumpectomy on right brest and 10 nodes removed under my left arm. i have to remind myself sometimes im a survivor, and indeed  have so much to be greatful for.  i have issues of after treatment aching in legs and arms and weak.  I think maybe i would ask for  consultation about your questions about residual cancer after treatmemts. i was told i was stage 2 in beginning. but later during treatment and more scanss or such that i was stage 3 because of ACTIVITY in mammary area.  i about went nuts.  i had had surgery first.  when i told surgeon about this he saidchemo would kill any activity. so did oncologist.  i am one to ask alot of questions and believe i would be if i was you. i wanted to have my ovaries taken out and got the answer no.  i also was estregon positive.   i am 55 and am on my 11th yr of life after. sure this probly didnt help but i am thinking about u and wish u the best rainbo star!