Newly diagnosed and need to choose treatment!!

Hi - I’m another newcomer. Found a lump beginning of March, biopsy etc showed two small areas Grade 2 they said. Had lumpectomy - clear margins, no lymph nodes affected but Grade 3 on closer analysis. Seeing Oncologist tomorrow - I’m told he will leave it up to me whether I have just radiotherapy or chemo too but will recommend chemo as precaution. Felt really well before I found the lump but now feel really sick all of the time!! Is this normal???

Hi river girl, welcome to the forum but sorry you’ve found yourself here :frowning:

i was diagnosed last march, aged 36, and following surgery mine was upgraded from a grade 2 to 3. I wanted chemo from the outset, they’d have had a battle if they had refused me. Any tiny percentage point of an increased chance of surviving was ok for giving up a few months of my life to treatment as i have 2 little boys, then aged 2 and 4. In the event, at grade 3 and being young i was a definite candidate for chemo anyway, dedpite having clear nodes, a smallish tumour (17mm) and no local vascular invasion.

Why dont you phone the helpline here yo help u get yr thoughts in order, they are great. And your breast care nurse should be on hand to talk you through it. Your oncologist should hVe given you info on the effect of chemo on your prognosis, if not you should consider askinb him. I had an extra 5 to 6% chance of being here in 10 years if i had chemo, which was well worth it.

Its a totally personal choice but i wanted to throw everything, plus the kitchen sink, at it.

Vickie
x

Ps. Totally normal to feel sick, i lost nearly a stone as i felt too sick to eat after shock of diagnosis. A year later, i’m back to my normal.

Hi River Girl

Under the sort of stress you’re under, feeling sick is perfectly normal.

I had also been originally told Grade 2 so just (did I say “just”? sorry!) radiotherapy and hormones, but when lump was examined further it turned out to be Grade 3 and HER2+ (no nodes, hurrah!) so I also get chemo and Herceptin, but even if it hadn’t turned out that way I had decided to ask my onc about whether chemo would improve my survival ratings.

Have you asked about your HER2 status? That will make a difference. I suspect that as your onc has left the decision up to you that you’re HER2-, which is a good thing. What’s your hormone status, will you be having Tamoxifen or aromatase inhibitors afterwards as well? If you are Oestrogen or Progesterone positive, hormones are usually prescribed.

There are others on here who have been given the choice, and they looked at the relative statistics that with or without chemo gave them. Without a doubt chemo is NOT a walk in the park, but with no node involvement you’d be likely to have FEC rather than docetaxel. Even if chemo comes as highly recommended by your onc, the decision is still yours and you don’t have to accept the recommendations of your onc. I suggest you ask the onc to explain what makes him recommend chemo rather than not, as he may well talk about the statistics. Ask about Ajuvant online (it’s a tool oncs often use to check their recommendations).

You might want to look on Macmillan for information about these two regimes to give you an idea of possible or likely SEs, or take a wander round some of the threads to see what real people have had (e.g. pink road of chemo, or one of the Starting chemo in Jan/Feb/March which are near the top of the latest posts list). I believe that people with no node involvement are not usually recommended TAX, and FEC seems to be the most usual though there are others with different chemo regimes, such as AC, CMF, EC. FEC seems the most common though.

Best of luck with your decision, but do take as much time as you need to make it, don’t feel pressured by your onc and if you need another couple of days to think about things, take them. A week at this stage isn’t going to make any difference.

Give the helpline a ring as well, number at the top of the page. It is staffed by very knowledgeable people and sometimes it’s good to have an uninvolved, but well informed, person to bounce your thoughts off. That’s what they’re there for, so use them.

And whatever you decide, you can be sure to have lots of support from the people on this forum, as there will be people in the same boat as you whichever way you decide.

Good luck,

CM
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CM

Just a quick question you say HER2- is a good thing what does that mean? I dont understand all this + and - stuff???

Thanks

Jill

Dear Rivergirl

Below is a link to a page which has a list of booklets to download about all the chemotherapy regimes. The information also includes possible side effects for each one.

As has been prviously suggested, do give our helpline a call on 0808 800 6000 as our trained staff will be able to talk through all your options with you.

breastcancercare.org.uk/healthcare-professionals/publications/treatment-and-side-effects/

Best wishes
Poppy
Moderator

Tolliebelle, here’s what I know, I’m sure others will pop in to correct me if I’ve got it wrong.

When your tumour is removed, and sometimes just when they do a core biopsy, they can check to see if there are any receptors on the tumour for hormones that make it grow more quickly. Many tumours (around 75%) show an over-expression of hormone receptors, so an increased sensitivity to Oestrogen (often written as Er+) and/or Progesterone (Pr+), which usually means you will be prescribed Tamoxifen if you’re pre-menopausal or an aromatase inhibitor if you’re post-menopausal. These drugs prevent your body from absorbing oestrogen, thereby “starving” any odd cancer cells that might be floating around looking to start growing somewhere in your body.

HER2 is another growth factor that some cancers also show an over-expression of. Can’t remember the percentage but I think it’s 20-25%. For these cancers, Herceptin is prescribed to prevent any stray cancer cells from absorbing and using the HER2 growth factor. HER2 cancers are more aggressive and more likely to return if not treated with Herceptin, but if treated with Herceptin the recurrence is the same as common cancers that are just Er+. The reason I said it’s a good thing is that if you’re not HER2+, you don’t need Herceptin, which is yet another drug we shove into our poor long-suffering bodies.

There are leaflets in the publications section that go into more detail about Tamoxifen and Herceptin so take a look there if you want a bit more info, this is just a very brief summary.

Hope that helps.

CM

Hi yes thanks it is bl***Y confusing isn’t it I have just read my report it states " ER,PR,HER2 negative is this triple negative that people mention??? I was told it was not hormone receptive! And after chemo and rads I assume that will be me done???

Thanks for your help

Jill

Yup, sounds like triple negative to me, but you would do well to speak to your BCN who can take a look at your path report and confirm it.

I’m the opposite, being effectively triple positive, but there are lots of triple negative threads on the forums so pop in there and speak to other ladies in the same boat.