Tamoxigang cancer support thread 54: A new thread for a new year!

[WhatWouldLeslieKnopeDo]

Welcome one and all to the wonderful Tamoxigang thread! May 2016 bring us all health and happiness

If you are new here, then an extra big welcome to the club nobody wants to join. The thread is for people with any type of cancer, and also those who are waiting for results. So don't be shy. We are more than happy to hold your hand while you are waiting for a diagnosis, and we will be here to celebrate or commiserate, whatever your news

No question is too big or too small, someone will usually have an answer, or an idea of where you might find one. You can laugh, cry, shout, swear, and, of course, eat chocolate it is a bit of a safe haven from the mad world of cancer, the head-tilting and talk of bravery, and all the nonsense that comes with this diagnosis :)

So feel free to introduce yourself. And oldies, feel free to re-introduce yourself if you'd like.

We only have one rule here and that is no Googling!

No diarrhoea as such. It is horrible as my mouth feels so dry.

Are you on any medications for bowel issues? Buscopan, for example, can cause dry mouth.

No Leslie, I am not on any meds.

Went to gp as presumed I had haemorroids and they were not responding to any treatment. GP did a digital rectal exam which was very painful when she felt around inside. She wasn't sure what was going on so prescribed a weeks course of suppositories.

They didn't work, so due to fatigue, loss of appetite, change in bowel movements, bleeding, random abdominal pains etc, she did a referral.

She did mention cancer as a possibility and that is why she didn't want to delay with more treatments.

Hi amberlight, didn't see your post earlier.

That would be a real bitch. Fingers crossed it is nothing.

DottyBee - when I was worried about my appt date, I went into the clinic as I hadn't received a letter, so they were able to give me it there and then? Would that be feasible for you? It was going to be way over the 2 weeks advised for what I was after, but by being there, I was able to get one 8 days earlier, so maybe you could try that? Best of luck.

Thank you all for your kind words - it's been an odd day, but a good one. They didn't seem concerned about any of the three things I had on the right breast, but after the mammogram and ultrasound they did come back to say they had found something on the left that they needed to check.

So, got a needle aspiration for that - it wasn't what they thought it was, but they feel it is a benign mass so I have to keep an eye on it (whatever that means) and go back in 6 months. I am very relieved, but a bit confused as well. One of the people I saw said that he wished all of those posters and stories about nipple inversion could be banned as he reckoned he had seen 1-2 cases of cancer causing that in his entire career. Still one or two though, isn't it?

I can't thank you all enough for seeing me through my appalling wobbles. There is nothing I can say that will help anyone really, unless someone finds this thread at some point and has a similar worry and gets a bit of comfort. The only thing I can offer is that is, at any point, someone reads it and has these worries as well as dealing with bipolar and/or type 1 diabetes, please do feel free to PM, as, for me, the thought of dealing with all three was really overwhelming at times.

I wish you all the very very best and hope that Xmas brings some peace for everyone x

PerfidiousPanda

I am very pleased to hear to that you had good news! What a relief !

I wish everybody in this thread peace, health and happiness in 2016.

That is good news Panda. Fingers crossed it will be good news again when you go back in six months.

I read your earlier post regarding going to the clinic and getting your appointment brought forward. I will chase mine next
week if I have not heard anything.

I have type 1 diabetes too. So I understand how overwhelming you felt about having to manage another condition/illness on top.

Have a Merry Christmas, and I wish you a happy and healthy new year.

Good news Panda you can relax and enjoy Christmas now
Thanks for the welcome back all

That's fantastic news Panda I am so happy for you 😃 wishing you and your family a great Christmas 🎅🏻🎄🍷

malt/mumto2 great to hear you are doing well and moving on with life 😃 Hope you and your family have a lovely Christmas xx

Phew PerfidiousPanda, what great news. I hope you are able to relax and enjoy Christmas now and all the best, I hope your new psychiatrist turns out to be less useless too! Even without breast cancer you have a lot on your plate

DottyBee your GP sounds sensible :) whatever is going on, the colorectal specialists will be better qualified to suggest treatments anyway.

Brilliant news Panda and Marshy!

Is it quite common for them to give both breasts a thorough check while you're there? I've read a couple of people saying that the issue they were concerned about turned out to be fine, but that something else was identified by the staff at the clinic.

I'm mostly doing very well at not worrying during the day, but at night I'm lying awake for hours. Strangely at least part of the worry is that I've imagined the problem and that I'll be wasting everyone's time

Excellent news Panda. I hope you have a relaxing Christmas.

Does anyone have experience of clinical trials? I have been offered to go in a trial of having chemo instead of a node clearance. Then if my nodes are still positive to get the clearance done afterwards.

Positives are avoiding a second surgery. I still have quite a lot of numbness from my mastectomy two weeks ago. I will reduce my risk of lympoedema, and I will avoid another long hospital stay. People on trials often have good outcomes due to being looked after well.

Negatives are that I had two false negative node biopsies so if I get an all clear I probably won't believe it. I'm also going to worry about the risk of cancer spreading if it's still in my body. Cutting it out seems satisfying. My cancer is a grade 3 strongly Her2 positive, weakly ER positive, and hasn't been staged. I haven't had any scans of my body yet apart from mammograms and ultrasound so I don't know if it is anywhere else. I may be unsuitable for herceptin, I have an appointment being booked with an oncologist.

So pleased for you Panda hope you have a super happy christmas. Did they give you a reason for your inverted nipple? I actually found my cancer through noticing a nipple distortion, not inversion, but when I lifted my arm one side of the areola indented and pulled to the side.

Mysillydog that sounds really interesting, I would LOVE to find an alternative to a node clearance, my armpit and the underside of arm are still numb and tingly just from the sentinel biopsy and I even have some slight cording down the side of ribs- dreading having the full clearance. How will they sample your nodes to know if they are clear after the chemo. Will you be having chemo anyway or is it going to be a special type just for the nodes?

I would say avoid the node clearance if you can as its that which puts restrictions on what you can do afterwards. I had a positive sentinel node biopsy, then chemo, then node clearance but they were all clear so I kind of felt that I could have done without the op. And it is a pain not being able to lift, go in a hot tub etc

I went for a second opinion regarding my treatment plan and the professor that I saw told me about a trial that had been completed recently where half the women had had full nodal clearance followed by radiotherapy and the other half just had the radio therapy; the rate of recurrence of cancer was the same for both groups but the radiotherapy only women were half as likely to get lymphodaema. This professor is involved in lots of trials and research and he seemed to think radiotherapy only was preferable to node clearance and radiotherapy. Having said this, the Christie have me earmarked for nodal clearance so this is something I will discuss with my oncologist. At the moment I'm minded to go with the radiotherapy only but I'll do some more research once my chemo has finisged. I don't really want to have more surgery unless it's necessary.

I meant to say that all the women in the trial had at least one positive lymph node.

Great news, Panda! Have a wonderful Christmas!

Hi all, my story is that i had bc in 2012 followed by radiotherapy and solarex injections. I found my lump the day after my sister finished her treatment for bc. No previous bc in the family (my grandmothers lived until their 90s).

Last year, got investigated after having my periods restart. Turns out I have thickening of womb lining ( endometrial hyperplasia) and got investigated for womb cancer. All clear. Due to,have a six month hysteroscopy check-up,to check,there's no changes, and may be facing a hysterectomy next year.

(Can I wish my old mate, Marshy a happy Christmas)

Happy Christmas to you too river

I forgot all the womb shenanigans in my story! All quiet for me in that department at the mo, thank goodness.

Panda - so pleased to hear your good news, what a great outcome.

mysillydog that sounds interesting! Although I think I would be asking a LOT of questions before making a decision!

How would they know if the nodes are clear or not? I know from my own experience that on the ultrasound my nodes according to them looked normal! But it turned out they weren't. Also would Radiotherapy include them zapping the underarm area? If so I believe that too can put you at risk of Lymphoedema, because the Lymph nodes can be damaged and affect the lymph flow. I know that having the nodes above my collarbone zapped has left me with swelling in that area, which looks like it must be connected to the Lymphoedema.

Dealing with Lymphoedema on a daily basis is frustrating, but doesn't really stop me doing anything. Obviously I wish I didn't have it, BUT I'm not sure I could of relaxed knowing the cancer could still be in there! Hence I would definitely need to know how they could check them after Chemo?

Good Luck with whatever you decide xx

I was reading something the other day about preventing lymphoedema and all the precautions like avoiding strenuous exercise, hot tubs, heavy lifting, sun exposure, injections etc all have very little evidence to to support that they make any difference. The only precaution with much concrete evidence was about avoiding weight gain and keeping body weight within healthy limits.

My main concern would be how they would know for sure that the lymph nodes were negative- mine looked ok on ultrasound too but weren't. Maybe they can do a needle biopsy? Although unless they did them all they still couldn't be sure could they? But I suppose even though they remove all the lymph nodes in the armpit there's till no gaurantee it hasn't spread beyond there to other lymph nodes as surely the auxillary is connected to the lymhatics all over the body? I agree with nanny, I would ask be asking a lot of Qs before making the decision.

My understanding is that they don't know whether the lymph nodes are cancerous or not so they assume they are and zap them all ( the ones around the affected breast/armpit) with radiotherapy. So they treat all the lymphs in the area as being cancerous, in the same way that they remove all the lymph nodes without knowing whether they're cancerous or not until after they've removed them. Radiotherapy alone can still cause lymphodaema but you're half as likely to get it than you are if you have them removed. This is my understanding based on what I was told. I'll check my follow up letter for the name of the study he referred to.

Yes Anna, that's what I understand too, I think you are right.

I was diagnosed with lobular BC in June 2013. After various scans it was then found I had secondary cancer in my bones as well. I had 6 X Tax but no surgery or rads. Since then i have alternated between hormone treatment (Letrozole, Tamoxifen and Exemestane - none of which were very effective and gave me lots of aches) and further chemo: Capecitabine and Epirubicin. Now waiting to go on to another chemo in the New Year as Epirubicin hasn't been effective.
I still work full time and have a DH and two DSs who are in their 20s. I am so old that I may retire in 2016!