Diagnosed as Borderline for Chemo

Hi
I posted on the forum last month when I was first diagnosed and had some very supportive replies for which I am very grateful. At the time I could not work out how to thank everybody (not exactly a computer whizz kid!) but someone has now shown me what to do so here I am again with a belated thank you to all those who replied.
I am 53 and have had a WLE and SNB. I am very lucky in that my nodes were clear and my cancer has not spread. My tumour is Grade 3 with high level DCIS and it measured 1.6 cm. Despite my nodes being clear I have been told that I am borderline for Chemo. I thought no nodes meant no Chemo! I assume I am borderline because I am Grade 3. I have an appointment with the Oncologist next week. There must have been others in this situation and I wondered if anyone could tell me how the Oncologist handled it, for example was there clear guidance and was the decision left entirely up to you? That would be such a difficult one to make. Also, I would be interested to know what your decision was and whether your tumour etc was similar to mine. There is so much going on in our lives my very supportive family could do without me being under treatment for many weeks, rather than a quick blast of Radio and a daily tablet. On the other hand I really do want to be around for many years to come!
It would be great to know how others have dealt with this and thank you.

Hi Rachel

Along with the replies and support you will recieve here, our helpliners can also offer you support and information about our ‘One to one support service’ whereby you can be put in touch with someone who has had similar options/diagnosis via telephone or email

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Best wishes

Lucy

Hi Rachel,
I was diagnosed with a 1.2mm, no node involvement but grade 3 and the grade was why I was offered chemothrepay. My Onc gave me the statistics of likely reoccurrence which was 85% no reoccurence this increased even more if i chose to have treatment i.e chemo & tamoxifen. For me I didn’t feel I had a choice as i felt any risk is a risk and will do anything to increase my chances of not being in this position again. However, everyone is different but your right it’s likely to be the grade as theres always a chance that a minute cell could have broke off into the bloodstream even at a very early stage. Just for the record chemo is doable, you can get through it, this is my second round with cancer (different type altogether) ive had 2 cycles of chemo so far this time round, yes it’s awful but you get through it and you do have good days.
Good luck, feel free to PM me if you like, take care xx
Sarah xx

Hi Rachel,
I was diagnosed with a 16mm, no node involvement grade 3 back in 2010 (following sentinel node biopsy), hormone negative but HER2 positive, only just invasive (ductal). In my case I was told surgery and radiotherapy was a given, but it was up to me whether I wanted to go ahead with chemo and Herceptin. My statistics for reoccurrence were 80% survival for ten years without chemo/Herceptin, and between 87- 89% with (so, ummm, 88% then). The decision was left up to me. As with Sarah above, I decided to go ahead with it as I wanted to throw everything at it first of all and know that I had done everything I could while I was young enough (42) and fit enough (I hoped) to deal with it. However even on the day of my first chemo I wasn’t sure, but the consultant I saw to sign off the treatment said that anything above a 5% benefit was worth going for (and as mine was 8% that was a clincher). Obviously though I didn’t have the option of Tamoxifen or similar as mine was hormone-negative, so that was another reason for choosing to have the chemo, you do seem to have that planned from what you said.
Chemo-wise I was on FEC-T, and the FEC was a lot easier than the T, but everyone is different (I’ve always been the kind of person who catches every cold going and has allergic reactions so I knew I’d get side effects, what I didn’t expect was the rough time with the steroids!), and since the treatment I’ve plunged into menopause and it killed off my ailing thyroid gland, but I have just had my third year check up mammogram and have my fingers crossed.
Good luck, and the decision has to be one that is right for you, not for anyone else,
Evelyn x

Hi Rachel
I was diagnosed January 2013 with a grade 2 19mm tumour, node negative, ER+ IDC, my oncologist told me I was borderline (I was 43 so it’s recommended for younger women) but that there was a small benefit to me having chemo, I grabbed it with both hands. I also met someone at my chemo unit who had a tiny 2mm grade 3 tumour and because it was a grade 3 the oncologist insisted she had chemo as it was aggressive. For me personally I wanted to take everything that was offered and never being in a position of thinking “if only I’d had chemo”, i’ve done everything I can now, the rest is in the lap of the gods. In your shoes with a grade 3 tumour I wouldn’t contemplate not having chemo but it’s a very personal decision.
Keep us posted
Love Lydia x

Hi Sarah, Evelyn & Lydia
Many thanks for your replies and your encouragement regarding chemo. I know you are all saying what I would say to anyone else ie belt and braces are better than just a belt! I suspect I am just trying to bury my head in the sand. I will let you know what the Onc says on Thursday. Apart from anything else, the thought of having a PICC feels with with horror for some reason. Did you have one and did it really not hurt having it inserted?
BFN
Rachel

Hi Rachel
I had a PICC line after chemo 4. Wish I had been offered it at the start! My chemo has finished but I am getting herceptin every 3 weeks x 18. It makes it so much quicker and easier. No needles so no pain.
The PICC line went in easily, only hurt slightly piercing the skin. After that didn’t feel a thing as it was pushed in.
it is in a goods position on the inside of my arm so against my body. I was worried about my 2 bouncy poodles knocking it but it has been no problem at all. Doesn’t hurt. Mostly forget it is there. cling film and runner bands cover it in the shower.
I didn’t have a choice on chemo. FEC-T. Was not as bad as I was expecting. I really would do it if I was you. Belts n braces.
Hugs to you
x sue

Hello,

 

I thought I post up some thoughts; it’s been raised that I too am in the borderline category for Chemo. Histology involves: clear margins after the lumpectomy for under 2cm, and no lymph node involvement, with strongly oestogen receptors, at age 47.

 

At my last post-op appointment my surgeon handed me an NHS info sheet about a research study called EndoPredict, that helps doctors decide whether or not to offer chemo.

The test estimates the risk of recurrence and looks at gene expression too. I guess there are other types of tests that do this, for example the Oncotype DX mutli gene testing and the Ki-67 tumor marker test?

 

I wonder how many types of tests there are to help figure out the decisions aound chemo when uncertain and borderline ?

 

I feel somewhat in limbo, and I wonder about

jumping at the option for further testing to reach the best decision.

Yet this is the future of oncology, so I would be wise to have more information to go on.

 

It really helps to hear your stories.

Hi,

With my specific diagnosis the prediction gave a 2-3% advantage if chemo was opted for. However this did not reflect the associated risks that chemo and its side effects can bring.

After discussions with my onc i opted not to have chemo though i am taking Anastrazole. My breakdown was highly oestrogen positive and HER2 positive.

At times i wonder if i made the right decision, and to date i am comfortable with my choice.

Usually i am a belt and braces person, but listening to my onc, knowing my circumstances (responsible for my home and young people who do not yet drive), and weighing up all the risks v poss benefits, i made my decision. I have had low mad times when i questioned not having “thrown all at it”, but that is the fear factor, which currently is all unfounded as to date remaining NED.

 

Wishing you well with your decisions, talk to those that really know… the help line here, your specialists, BCN etc.

Thinking of you, happy to private message if you wish for more specific details. Was just 50 when diagnosed, now 18 months from that.

LL xx

Hi

I was diagnosed in Oct and had mx.  It was grade 3, HER negative, ER positive, No lymph node involvement.  On NHS predict I was borderline for chemo.  They sent my tissue off fir the oncotype dx report and it came back as intermediate at 33.  This meant I would need chemo.  I had my first FEC on 23 dec and to be honest it was not too bad.  Hope this helps you. 

 

Best wishes

Lynne x