Chemotherapy or not!

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1

Hi there,

Not sure of the best place to post this query.

I’ve got invasive ductal cancer. I had the follow up visit to the hospital last week following surgery.

The tumour was 11mm, grade 2 and unfortunately I’ve come out positive for the hormone receptor and the HER-2 test was 3+.

I’ll see the oncologist next week but I have been told the recommended treatment now includes chemotherapy because of the HER-2 result.

Prior to the operation, I was told the cancer was unlikely to have spread to the lymph nodes and therefore I wouldn’t need chemo. I have been devastated to find that despite no spread to the lymph nodes that chemotherapy and herceptin are now on the agenda. I was expecting 3 weeks of radiotherapy and now I’ve got up to 18 months of treatment with chemotherapy, radiotherapy, tamoxifen and herceptin.

I would be grateful for any input of what questions to ask the oncologist so I can make a sensible decision about whether go with the chemotherapy treatment as well as the radiotherapy.

Many thanks, Calyco

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Hi Calyco,

I had invasive ductal cancer last April, 15mm grade 2, I had surgery last May followed by chemotherapy because 1 lymph node involved. Hormone receptor positive but not HER positive.On Tamoxifen for 5 yrs.I had lymph node clearance DEC and start radiotherapy next Tues for 3 weeks.

I think an important question to ask would beare chemotherapy and Herceptin necessary because of the HER2 status

3

Hi Calyco

I found my lump a year ago and had mx with reconstruction on 18th April 2011. My lymph nodes were clear and my 3.8mm tumour was HER2+. I followed with 3 FEC and 3 docetaxel chemo and 15 radiotherapy sessions. I have now had 9 out of my 18 herceptin treatments and was told that all my chemo, rads and herceptin were my insurance policy against a recurrence. I wasn’t told any % chances and quite frankly I wouldn’t want to know as they are only based on statistics - nobody can give you any accurate figures - let’s face it everyday life is a game of chance. If you looked at road accident statistics you wouldn’t even think about getting in a car. Quite personally, I wouldn’t want to know my % risk factor.

As far as I was concerned the more treatments to guard against a recurrence the better so I opted for the ‘Full Monty’. Breast cancer treatment is a costly business - my herceptin treatment alone costs more than £30K and I am sure the NHS wouldn’t spend it if it didn’t work.

As has been mentioned, chemo is doable so don’t be afraid of it. I can’t say that I was looking forward to it, but it was nowhere as bad as I imagined it to be. OK losing your hair, and then your eyelashes and eyebrows is not a prospect I was looking forward to, but it is a darn sight more preferable to losing my life. 6 months after my last chemo my hair is now growing back as are my eyelashes and eyebrows.

Why do you not want the prospect of chemo? If it is fear of the unknown then listen to all of us ladies here who have been there, done it and have come out the other side. Discuss it with your oncologist and remember that you MAY experience the side effects, but then again, you MAY NOT. And if you find that you really can’t cope with any side effect then tell your oncologist as they can always find a solution.

Good luck with what ever it is you decide, but remember that you are being offered the best possible treatment for YOU as an individual, but, ultimately, only you can make that decision based on what your oncologist tells you.

Mazzalou xx

4

Thank you both for replying.

I think I’m still in shock after being offered chemo. My way of coping before was at least the treatment seemed very straightforward. It’s very difficult to adjust from an initial proposed treatment of 3 weeks radiotherapy to a 12 or 18 month course of treatment but I guess it happens to a lot of people.

It’s not going to be an easy decision.

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HI there - I knew from the start I would have chemo / rads and lumpectomy, but then got a huge shock at second week after lumpectomy and axillary clearance to find I had to have MX, so second op etc etc.
In the end for me it wasn’t really a realistic choice to turn it down - the oncologist put the stats into some gismo on his computer, and altho they are jsut stats and don’t reflect what will happen to you and are also based on very old treatment regimes it did show I had an increased % chance of not getting secondaries if I went with the MX - so i did.
I managed chemo, and at the time it was a demanding treatment, but you know what, it passes…and you’ve done all you can to kill those pesky little cells, don’t be too afraid of it, it really is managable, especially with a little help from friends, family etc,
best of luck, Nicola

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HI there ladies, I was diagnosed in October, and to start with it was a lumpectomy and rads, then from an MIR scan there were other suspect areas, so it meant a mastectomy and then was given the option to go for Chemo…and after a lot of advice, decided that I wanted to throw everything at it and didnt want to look back and think I should have done more…I am younger and fitter now than I will ever be…I am coping better than I ever thought I would and its all due to the support and help of friends and family.

7

Hi there

I can understand your shock, I was the same. From an initial Dx on 22 nov, further biopsies because original ultrasound found more suspicious lumps, and MRI and CT scan I had a WLE and therapeutic mammoplasty on 16 Jan. Was told this would be followed by radiotherapy so should all be ok by April. Then saw oncologist and because of size 35mm my age and grade 3 it had to be chemo. You could have blown me over. I’m now nearly half way there no 3 of FEC next week, then rads. Been off work since Xmas and driving me mad, can’t wait to get back to normal life.

If they recommend chemo really there is no choice, yes it’s a long haul but doable, and you have to ask yourself wouldn’t you want everything thrown at it to make sure you were fully clear.

Hang in in there I wish you an easy journey.

Carolyn xxx

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Calyco, same here.

Dec 2010 told I had grade 2 IDC, after surgery it was upgraded to Grade 3, and HER2+.

I’m still having Herceptin and it’s a nuisance but not a big problem as long as I have tissues around for the runny nose.

If you DO go for it I can HIGHLY recommend you ask for a portacath BEFORE your first chemo. This will save the veins in your arms from being damaged by the chemo and means you can swim, bath, shower etc without worrying about a central line (PICC or Hickman) which are the other options if you don’t want to have canulas in your veins every time.

It’s tough, but my onc told me the results of recent follow ups for Herceptin are extremely positive, showing that it now brings our risk of recurrence back to the same as Er+ ladies, or even lower.

Talk it over with the helpline on Saturday (probably shut tomorrow as a bank holiday). Number at the top of the page.

And bearing in mind the cost of all these drugs, if they didn’t think it’d do you good, they wouldn’t offer it to you.

Good luck.

CM
x

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Hi Calyco

I can vouch for a portacath too as ChoccieMuffin has said. I only wish somebody had told me to ask for one BEFORE my 1st chemo, and not once my veins had given up. It is quite painless as you are heavily sedated when the portacath is inserted and you won’t remember or feel a thing, and because it is under the skin it is free from infection too, and without the need to have it flushed regularly like a central line. Remember that you will need to have it for the period of your chemo sessions as well as the year that your herceptin treatment will be for.

Just remember that nothing in life is straight forward but a series of hiccups and diversions along the way.

I hope that you are feeling a little bit clearer about what your decision is going to be, but if it helps most of those who have replied to you have come out the other side so if we can do it I’m sure that you can do it too!

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Hi Calyco

I had my WL and SNB o 27th Feb. My tumour was 13mm, ER+, HER+, no nodes, Grade 2. Almost identical to you.

I started a thread called 'Refusing chemo and herceptin" as just like you, i was totally shell-shocked to be told my adjuvant was chemo and herceptin, rads and letrozole.

The replies i got on that thread helped me so much to understand more and also i checked out the american site breastcancer.org where there is a huge amount on there about HER2+

When i saw the onc, he told me I was a very small minority - strongly ER+, grade 2, not grade 3, stage 1 but he then told me that HER2+ gives me a 1 in 3 chance of a recurrence within 5 years. he then told me very carefully and wrote it down, that with all my other presenting factors, doing the chemo and herceptin rads and letrozole, gives me an almost 100% chance of being rid of this for good.

In the UK, they do not give herceptin without chemo. however, I because my other factors are low risk, I am only having 4 FEC. he said if it is intolerable for me, he will stop after one and just switch me to the herceptin as that is what is crucial for me.

So calyco, i do know exactly where you are at, but after seeing the onc, listening to all the wonderful ladies in these forms, I am happy with my decision and just getting on with it. Portacath being fitted on 24th april, first chemo on 25th.

If you go for it, perhaps you can drop in the April 2012 chemo thread - we are all newbies doing the chemo foxtrot together.

Smiles

Ppixie

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Hi
Like everyone else I was shocked when I needed chemo. Scared stiff. The first day of chemo, sitting in the chair and waiting…I just wanted to run away. But, honestly it’s not as bad as your mind thinks it is.

After I finished chemo a friend was dx with HER+, grade 3. She refused chemo because she was scared (who isn’t?). I tried to persuade her but she declined chemo and died 12 months later.

I’m not trying to scare you but if you are HER+, it is an aggressive cancer and you need chemo in order to have the wonder drug (herceptin)

Mal

12

Surely 18months of treatment, and it isn’t easy, is preferable to the possible alternative?
I told myself “why go the doctor in the first place and then decide not to follow their advice?” No contest.
It is scary, but good luck. I think we are so lucky to have the NHS.

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Hi, You need to ask about the percentages and obtain more information on the effects of the chemo. I thought as soon as they put the first infusion in me I would be sick (never happened) and lose my hair straight away (within two months).

I was a stage 3 grade 3 invasive b Cancer which had spread to my lymph nodes and HER +. My treatment plan was changed around…I had 6mhs chemo, Herception (for a year), a month off then mastectomy and lymph node sweep followed by almost two months off then 25days radiotherapy. I should have had 8yrs of hormone supp (ie tamoxifen etc) but declined due to the extreme menopausal side effects I had with it initially. Also when I asked for the statistics of the success of tamoxifen I was told that they did have good results with the use of the drug however, 60 - 70% of women who took it still had a return of cancer of some sort. For me I weighed up was I wanted…menopausal symptoms (of which others cope well with) or me being me for as long as possible. This decison weighed heavily on me and other women who had breast cancer thought I was foolish. For me that was the best decision. The chemo I found difficult but you get through it and eventually you are able to move on to a new normal.

Its not a time for individuals to make decisions on their own, dont be frightened to talk it though.

By now I am sure you will have made your decision and moving on, time really does fly honestly although I am sure sometimes it will drag too, I cannot believe it is 2012 I am living my life, look like and feel like me again and just about to have my recon surgery and a prophalatic mastectomy too…

Best of luck and take the lead from how you feel, the professionals and your family xxx