help!!

Public Archive
1

I didn’t have a great day yesterday(or what i had expected) as had just received the news that the cancer had gone into 1 of the lymph nodes!! They took away the 2cm tumor on the side of the breast and said they found a tiny tumor behind that one in which the cancer was still contained within the milk duct, so together the two lumps where 3cm wide. They took these away and two lymph nodes, which only one was cancerous.

I feel angry today as it was like a cattle market (next)! I was sent home with two options to think about, either to have a mastectomy and lymph clearance, OR to take away some margins around where the tumor was (to test if the cancer has spread into the breast) + the lymph clearance! I feel I did not receive enough information to make this decision as it was all a rush and they even forgot to check my wounds to see if they had healed OK, but realised at the last moment. ‘where is all this aftercare and support’?

The two scars have healed fine but i am left with this terrible sensitivity on my nipple and i have to put a cotton pad over it and constantly take painkillers, which helps a little, but if any clothing touches me at all its sore. It is preventing me from walking or getting about in general and think that obviously some nerve has been damaged. This is swaying me towards the decision of having my breast removed.

The surgeon thinks i have a chance of saving it but this means another op, which he said i could leave for a month if i wanted, but that’s like waiting for everything to heal and starting all over again. My feeling is, if i go down that road i would be better to get it done a.s.a.p.
He also stated that if hypothetically the cancer came back then we could take the breast off at a later stage.

How I’m i supposed to make these decisions when there is so many unanswered questions!!

  1. If you have a mastectomy and cancer comes back, what area does it manifest itself in if you have no breast of lymph nodes?

  2. If they only took two lymph nodes away and 1 was clear, why do i need a complete clearance instead of a sampling? If it was only the first one it would make a big difference to the decision of a complete clearance.

  3. If the margins came back clear, and it was only 1 lymph node that was affected, would this not make a big difference to the treatment, IE. radiation and or chemo?

  4. Why am i left with a really sensitive nipple when the operation was done on the side of the breast + is there a cream that i can purchase that can numb the area for some relieve?

Your input would be appreciated.
Thanks C.

2

Hi rosiefff

I am sorry that you had a bad day yesterday and hope that you find the support you are looking for in these forums. You may find it helpful to talk to our trained breast nurses on our helpline 0808 800 6000. This is open 9-5 Monday to Friday and 9-2 on Saturday. Also the link below takes you straight into our factsheet section on Treatment options.

breastcancercare.org.uk/server/show/nav.24

I am sure that you will be getting lots of advice and support from our forum users very shortly.

Best Wishes
Annabel
Moderator

3

Sorry you’ve had a bad day. I’ve said this before but I do think sometimes that medics don’t think through the way they come across to patients. It’s a day at the office to them, and you’re probably the 10th person they’ve seen that day with bc, but to you it’s all new ground and I think they forget that. The fact that there are so many people to get through every time just goes to show how common this disease is.

I’d say if you feel you aren’t well enough informed to make a decision, call your BC nurse and ask to go in and talk it through. After I’d been seen by my consultant with my results I was then taken off to talk to the BC nurse to go over it all again and have more time to ask questions etc. I was with her for about another half hour after seeing the surgeon.

Don’t feel pushed into doing one thing or another until you feel comfortable with your decision.

As for the nipple - mine was very sensitive at first but settled within about 6 weeks max. I wonder if any of the creams you can get to help with breast feeding pain might help you in the meantime?

4

Hi Rosieff,
I am sorry that you have such a miserable experience so far.
I agree with Gennie… The decision must be yours and only after you have discussed this further with your BC nurse. If necessary insist on speaking to your consultant again.
I had a WLE and SNB and 3 out of 8 nodes were involved. I decided for a clearance and am glad that I did as another 2 had cancer. 5/29 total. I had clear margins on my breast so decided against a masectomy. The way I saw it was the Cancer has gone. I didnt want to risk leaving a cancerous node in there. Presently on the chemo trail.
Good luck with your decision and let us know how you get on.
Love Lynn x

5

Hi Rosieff,

I went into hospital on the 17th Feb to have WLE,Lumpectomy and
Sent Node Bioposy done on the 18th Feb.

The whole ordeal was very traumatic. The staff in the Breast Unit
were fantastic, but obviously once you are in hospital, you are
treated completely different.

I tested positive for MRSA at my pre-op assessment, so on arriving
at hospital had to be confined to a side room. Apparantly they
had been trying to get hold of me the day before the op to ask me
to go in earlier so they could inject the dye. I had not been at
home, but did not receive any missed calls on the mobile phone.

First thing Wed morning they took me down to ultrasound for a scan
to mark the lump area. I then went back upstairs and sat around
for 3 hours, before a nurse arrived to tell me they had been a mistake and I should have stayed downstairs to have the dye injected.
At 11.45am I then go to have the dye injected, which takes 40 mins
to work into your system before they can get the images needed for
surgery.

At 3.30pm I was finally called to go down to the operating theatres,
by which time I was climbing the walls and had got myself into a
complete crying wreck. My surgeon was carried out by a consultant
whom I had seen in the breast unit, which was a small comfort as
he did remember me, (also crying at that appointment lol).

The aftercare, as you experienced, is very disappointing. I was
being very sick due to the anaesetic (excuse spelling). On Thursday
one of my drains became blocked and I waited 2 hours for a nurse
to come and check it, (due to handover being carried out!). When
she finally had the time to look at me, it turned out one of the
vacuums on the bottle was not functioning, so no fluids had gone
into the bottle. By this time, I was experiencing a lot of pain.

On the mornings doctors round, bearing in mind I did not get back from recovery until 6pm the previous night, I was told that I could go home that day. He had to be corrected by some other prof body, who said no I couldn’t as the op had taken less than 24 hours earlier!

As you said, I do think that you are going through enough emotional trauma, but are treated as a number, who they really do not have the
time to care about. I couldn’t wait to come home.

Having come home, my children (all teenagers), who were heartbroken to see me in hospital, seem to all be forgeting I have just had surgery and are back to their normal ways, ie only thinking about themselves and their night out ahead of them!

I feel I am putting a massive brave front for everybody at home
and friends/family who are knocking on the door with flowers,
cards etc and then once everybody has gone, I feel totally alone
on this emotional rollercoaster.

Apart from an achey feeling under the armpit and breast area, as
already advised the recovery is good, but they do not tell you about
the emotional recovery. It is hard staying positive, knowing
you have another 2 weeks wait until you get the results. Yes, as you
have probably already guessed, two days after the op I am feeling
very sorry for myself LOL and thinking my life will never be the
same again.

Sorry to blubber on, wondering at what stage I am actually going
to deal with all this x

6

Hi Marble,

Sorry to hear you’re feeling rather down. If you need someone to talk to the helpline staff are a very good listening ear and are there to support you. Lines are open again on Monday morning at 9am til 5pm (Mon to Fri) and Sat 9am - 2pm. Calls are free, 0808 800 6000

Take care,kind regards

Jo, Facilitator

7

hi marble - and gentle hugs - sorry you’re having a crap time and that its hit you hard at the moment - you’re right it is a rollercoaster but don’t forget you have been through an anaesthetic and surgery never mind all the rubbish whilst you were in there and supposedly being looked after…I had my surgery nearly 4 wks ago on 28th jan, wle and node clearance and had an infection afterwards which knocked me a bit and can really say I know what you mean about being brave for everyone else etc etc. I made myself go and lie down every day either for a sleep or a read or both and turned the phone off upstairs, you need to rest and be looked after a bit but is is alien to us lot isn’t it as we do the looking after…talk away here, join us on the storm raiders thread - we’re on our way to Determination via the scenic route. Where are you from? Anywhere near Shrewsbury - you might have said already but the brain is permanent mush…take care, mary x

8

ps the helpline is really good - I rang the first day I was completely on my own after hearing diagnosis and it was so good to hear a voice and talk to someone who understood…x