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I was diagnosed yesterday

22 REPLIES 22
apandy
Member

Re: I was diagnosed yesterday

Update

 

I had my WLE and SNB on 30 August and my results yesterday.  It is, as said before, Stage 1 Grade 2.  It is also, as I suspected, triple negative.  I am booked to see the oncologist on 30 September and chemotherapy shortly after that.  Thanks for all your support everyone.  It feels better to know what my treatment will be. Smiley Happy

 

Anne x

Bowl_of_cherri
Member

Re: I was diagnosed yesterday

Hi Anne, Your surgeon knows best, afterall he/she is the only one in pocession of the facts of the initial tests, so listen to his/her advice. I was initially told I had a grade 3 (aggressive) 2cm tumour and ER + prior to my WLE and SMB. Since WLE and SNB, I have been told I have 1.8cm tumour with no SNB involvement. There is talk of Chemo because it's grade 3, no treatment plan still though. You have been told grade 1 ? or 2? , which is good news . What I have learnt from looking on here is , no 2 people are the same with breast cancer. There are so many factors involved and no two people will have the exact same experience. If it is bothering you, I think you should give your BCN a call to clarify if you are HER2 or Triple negative . At least it will clear up any uncertainty. You can also ask about the grade, is it 1 or 2? The surgeon said your prognosis was excellent, that has to be a good sign. My surgeon simply said grade 3! ( He had a very poor bedside manner in my view.). You take care Anne, big hugs Kathy xxx
Guest user
Not applicable

Re: I was diagnosed yesterday

Sorry to hear about your diagnosis , you wont know the actual stage until you have had the sentinol node biopsy and the lump thats taken out which will be sent to pathology what the final grading will be .
I had similar but I was her2 positive in 2007 and i had zolodex for 2 years and tamoxifen for five with no chemo .
If you ever want to chat about how your feeling feel free as it can be reassuring talking to one of us on here oppose to family .
Good luck and big hugs for August
apandy
Member

Re: I was diagnosed yesterday

Thank you Elaine. Becasue my surgery is going to be so late (30 August) I am not going to know anything until mid September so I guess I am trying to figure it out for myself. I have concluded I am likely to be triple negative and going on chemo. After that is anybody's guess.
Thanks for your support. I just wish I could think about something different!!!

Anne
Guest user
Not applicable

Re: I was diagnosed yesterday

Hi Anne I totally understand all your worries and concerns, I was freaked out when I was diagnosed too. Having been through the process, I can only advise that you focus on your WLE and SNB results when you will know for sure what your treatment will be. If you do have to go on to have chemo although it can be physically and emotionally draining, the treatment is usually only 6 cycles (every 3 weeks) and ultimately will give you peace of mind that any stray cells will be zapped! I used to visualise my chemo as a "Pac Man" whizzing around my veins, munching on any bad cells remaining! Silly I know but it worked for me. Also, if you are HER2 positive and go on to have herceptin, this will help prevent relapse so try not to think too negatively about it. Tons of love and luck - Elaine x x
apandy
Member

Re: I was diagnosed yesterday

Thanks for that, Sam. I have already established that I will be on full pay for 6 months followed by half pay. My concern is that, if I am given chemo it won't be until the end of September (a month post surgery which is happening on 30th August). This will mean 6-8 months of chemo will run over the six months full pay and into half pay. Sorry to hear that you are having the same issue.
I was told chemo was an option. I have concluded that since I am ERPR negative it is very real scenario. But I wonder what the chances of me being triple negative are, if I am already 2 out of 3 negative.

Anne
samjs
Member

Re: I was diagnosed yesterday

Hi Anne,
I am further down the line from you and just waiting for my oncology appointment. When I was at the hospital on Thursday for results of 2nd wle I was told that as a teacher I should not be at work during chemo at all. They said to expect another 8 months off. I have already been off since half term. You should get 6 months full pay, 6 Months half pay.
Sam xx
apandy
Member

Re: I was diagnosed yesterday

He told me I have Invasive Ductal Carcinoma and DCI. He also said it was ERPR negative and therefore I would be unlikely to have hormone therapy. He also said he thinks it is Stage 1 Grade 2 but they aren't really sure yet.
I am confused. I understand triple negative is when you are ERPR negative and also HER2 negative. I don't know my HER2 status yet, but since I also understand HER2 positive is worse than triple negative I don't see how I win either way. How can the prognosis be excellent (as the surgeon said) if I am EPRP negative?
I am confused and worried now.

Anne
Bowl_of_cherri
Member

Re: I was diagnosed yesterday

Hi Anne, I am fairly new on here myself but from what I have learned if the tumour is triple negative you have chemo. After my core biopsy I was told the grade (3) but not the stage. My BCN said they cannot stage it until after WLE and SNB, stage is decided on the findings in the path report. I am now wondering if it is DCIS you have ? Kathy x
apandy
Member

Re: I was diagnosed yesterday

Just looked again at the notes my sister took during the consultation with the surgeon. It says ERPR negative. I don't know the HR2 status yet. I wonder if this means I might be triple negative. Am wondering if chemo is more likely to be offered.

Anne
apandy
Member

Re: I was diagnosed yesterday

Hi Maggie
Thanks for your reply. I am on a teaching contract (albeit part time - 3.5 days) so I could get full pay for 6 months. I will certainly consider your suggestion of taking the time off if I have chemotherapy.
You say you think they probably will use chemo as I am ER negative. Is that because they just want another weapon in the arsenal as well as the readiotherapy, whereas had I been positive the weapon would have been the Tamoxifen instead? I am trying to understand how they decide these things.

Anne
maggiemay22
Member

Re: I was diagnosed yesterday

Hi Anne
The grade is how abnormal the cells are and how fast they're dividing - graded 1-3 so you're in the middle. The stage is dependant on the size of the tumour and whether or not the cancer has spread. I thought they couldn't tell this until after the SNB. As you're ER-ve I think it's more likely that you will have chemo.

As a teacher myself I understand that you want to start the new school year with your new class but, if you're lucky enough to be on contract (I'm supply) and get full pay for 6 months, I would take the time off and make sure you're fully fit and rested before going back to work. The effects of cancer aren't just physical, they're emotional as well and teaching's a stressful enough job as it is.

Maggie xx
angiepops
Member

Re: I was diagnosed yesterday

hi
i think chemo and children dont mix because of the risk of infection from them. People, not things, are the problem, in case you pick something up. I work in a large hotel and i worked through chemo to start (FEC) but i wasnt near guests. Now i'm on Docetaxol ive given up for a few weeks to get rested properly, why give your body more to cope with?
hope this helps
angie xx
apandy
Member

Re: I was diagnosed yesterday

I saw the surgeon today and he had the results of my biopsy. I have a Stage 1 cancer grade 2. I'm not 100% sure of the differences between stage and grade but am reassured that they have caught it early. Apparently 3.5 cm to 4.00 on the mammogram but less on the ultrasound. He reckons they will remove a piece the size of a golf ball in the lumpectomy. I am also going to have a sentinel node biopsy. The good news (as far as I'm concerned) is they think the cancer is estrogen insensitive so I won't have to go on hormone therapy (Tamoxifen), which is a relief as I was worried about side effects.
After my surgery they are considering radiotherapy and possibly chemo as well. My surgery is likely to take place on 30 August. This may seem late, considering I was first diagnosed on 16 July, but apparently my surgeon has a busy schedule.
I am feeling ok about it all although not too happy about the possibility of chemo.
I am a bit concerned about my sisters though. I am an identical triplet so I understand their chances of having bc are now much higher. One of them has just had a clear mammogram and the other is going to try and get one asap as she hasn't had one for a couple of years.I think they should both have annual screeing from now on.
I have been told to expect to be off work for the whole of September but I don't quite understand why if I am not starting treatment until a month after the surgery (end of Sept onwards). I am a teacher so maybe that is a factor. One question I have is: is it true that I couldn't continue working during chemo as I am with children?

Anne
apandy
Member

Re: I was diagnosed yesterday

Thanks Mrs MC. I will keep you advice in mind.

Anne
Guest user
Not applicable

Re: I was diagnosed yesterday

Hi apandy - so sorry to hear about your diagnosis, I know what a shock it is when you first find out! the ladies here have given you sound advice, and I agree although you wish to be informed to make choices, please dont search the internet! BCC, Macmillan and Tenovus web sites have all the information you will need. Following your surgery and pathology, you will know at lot more of what treatment path you will take and there are many forums on this site that can help with any particular queries you have. I had a lumpectomy in September last year (2.5cm) with sentinel node biopsy, which was clear. I went on to have 6 x FEC-T chemo cycles, 15 days radiotherapy and because of HER2+ and ER+, I am now half way through 18 cycles of Herception and have just started Tamoxifen.
Remain positive, enjoy your holiday and take each day at a time. Lots or love and luck x x x x x
apandy
Member

Re: I was diagnosed yesterday

Thank you for your support everyone. I have invested so much emotion and time ito the kidney donation, which is what makes it a couble whammy. I had even gone to a conference by the Give a Kidney charity who are promoting altruistic donation, and had been reading edlessly about kidney related issues on line, not to mention all the tests at St Georges.
Now, here I am again, going back to St Georges and it is a different part of the hospital for an entirely different reason. Now here I am reading all about breast cancer. I was going to help make someone better by giving my kidney, but now I am the one who needs to be made better. Everything has turned on its head and it all feels so strange and so sudden and out of my control. But I must try to put that aside and not think about what might have been, I know.

Anne
maggiemay22
Member

Re: I was diagnosed yesterday

Hi apandy
The others have already given you a lot of information. I just want to welcome you to the forum...it's a great place for support, especially at those horrible waiting times.
I was upset when I phoned the blood donation people to cancel my next appointment and they told me I could never donate again even though I haven't had chemo so I can understand how upset you must be about the kidney.
xx
Maryland
Member

Re: I was diagnosed yesterday

Hi apandy....you sound pretty devastated on all counts. I can't comment on the altruistic kidney donation situation, except to say what a special act to have planned; albeit probably not going to happen now. On a lesser note since chemo I have had to stop donating blood, and yet to check out (more than my brain can handle at the mo!!!) about organ donation having had bc. I guess there are stringent rules in place to protect patients in this litigious society we have become!
On the diagnosis front, the path results from biopsy can give a reasonably accurate indication of grade (although that could change either way once the lump has been removed) and the ultrasound/palpation of the lump again can give a reasonable idea of size, but the actual size cannot be determined with 100% accuracy until after surgery and the offending lump has been removed. If ultrasound or physical exam did not indicate any spread to lymph nodes, there is again a chance teeny cells (only visible under a microscope) may be present.....depending on your hospital, they may remove the sentinel node (the first one the breast drains to) whilst our are 'under' and check it. Action will depend on results....either stitch you back up or do a partial/full node clearance. Your surgeon will explain all this to you next week, but it will probably be a blur! Try and take someone with you and some ready-prepared questions. I believe BCC has a useful checkist?
Be reassured that your diagnosis is unique to you, as will be your treatment...WLE (lumpectomy) + radiotherapy has as good survival rates as a mastectomy. Chemo again is individual and varies between hospitals, but a rule of thumb is if nodes are affected, the lump is grade 3 or HER2+ (not exhuastive!!!) and if your team feel there will be any longer term benefit.
Most important now is to enjoy your holiday, try to focus on the present, not the 'what ifs' (easier said than done!). You will get through this with the love and support of those close to you. You take care x

apandy
Member

Re: I was diagnosed yesterday

Hi Flip Flop and Poemsgalore. Thank you for your replies and support.

Poemsgalore: my kidney donation was gong to be altruistic kidney donation to a stranger. It may be they are more stringent about eligibility to donate if you are an altruistic donor but it is conditional upon a clear mammogram, as well as all the other tests. I went to see the transplant sister after my diagnosis and she told me I can't donate at all now, even after the cancer is gone. The people in the breast unit had already told her about my cancer.
I assumed the cancer was grade 1, so it is a bit disconcerting to learn it could change after surgery. They seemed to think it was contained, and saw no sign of lymph nodes, so I do hope not.
I believe the surgery will be some time after my return from holiday on 6th August. The radiotherapy will be for 3 weeks, I understand, starting a month after the surgery. I assume chemotherapy is only used if it is more serious. Is that correct?

Thank you for your support.

Anne
poemsgalore
Member

Re: I was diagnosed yesterday

Hi Anne

I'm so sorry you have found yourself in this situation. First, please don't Google. You will find scary stuff on there that is either out of date, or simply not true. Just stick to this site and the Macmillan site for information.
You say your lump is 2cm. After surgery, that might change as they can't tell what the size is properly until it has been removed. You will also find out what grade it is after surgery. It is good that you will be having hormone treatment as that is like an insurance policy after other treatments.
I'm also sorry that you have had to delay becoming a kidney donor. Depending on what other treatment you need, that might still be possible. Radiotherapy can take between 3 to 5 weeks to complete and I'm sure the hormone tablet shouldn't affect things. It might just be a matter of whether you are up to further surgery later in the year. I'm sure others will come along and correct my assumption if I'm wrong.
Sending big hugs and good wishes and hope you find out your surgery date soon.
Poemsgalore xxx
Flip_flop
Member

Re: I was diagnosed yesterday

Hi anne,
sorry you have found yourself on here but you will get lots of help and support from everyone on this site. It is lovely that you were going to donate a kidney but you need to put yourself first for now. I had a lumpectomy in may and am now on chemo. You will find lots of threads that discuss things like radiotherapy and hormone therapy.
take care
faye
apandy
Member

I was diagnosed yesterday

Hello everyone
This seems like a good place to be right now. I found out yesterday that I have a 2 cm breast cancer and I am having a lumpechtomy in August, followed by radiotherapy and hormone therapy. I am seeing the surgeon next week.
I am particularly upset because I had been planning to donate a kidney later in the year and was going through all the tests for that, so this is now no longer possible.
This site looks like a good place to get information and support. Thank you.

Anne