Should I be here?
 

Hi

I am an anomaly so far as Her2 positivity is concerned. My prognostic indicators were good (tiny tumour, grade 2, negative nodes, no vascular invasion, strongly ER/PR positive), the only bad one being IHC2+ which was confirmed as weakly FISH+ (2.71). Therefore, I received neither chemo nor herceptin.

For the third year running, I have been declared NED by mammogram and ultrasound, which is great.

My question is, do I belong here?

Mcgle (UK)

Well, I believe the purpose of this board is for persons affected by HER2+ cancer to seek information and to share with each other. So it seems to me that you belong here. There are alot of "grey areas" in this disease so perhaps your situation can benefit others in the same unique spot. Maybe that is why you are meant to be here. But I guess only you can answer your question. I hope you stay.

Of course, you belong here, just as I also belong here although I received neither chemo nor radiation. There are vast number of HER2 patients who are in our sub group and we need to share our experience with people similar to us.

There are myriads of people in various degree of involvement with this dreadful disease. We need to unite with all patients and try to find the best course of action.

You belong here - absolutely - you are our Her2 sister. And you bring a great piece of treatment protocol with you too. There aren't many like you (actually no one is exactly like you).

My wife, Nicola, passed away almost a year ago, and I still linger here because I've established friendships and grown to love you all. Do I 'belong' here? I probably don't belong anywhere, except on the "Island of Misfit Toys". Mcgargle, you definitely belong here, as much as I do. (keep in mind, though, lass, these colonials make a terrible meat pie and their toad-in-a-hole will make you want to head for the door, but they seem to be good people.) You belong here, gal.

Cancer is cancer, no matter how you cut it! If you've been affected by cancer and want information, need support or want to offer support to others then you belong...

Sorry for the reason you're here, but you've found a great to be - welcome!

Thank you for your generous replies.

It's just that my tx was so 'light' compared with many of you (quadrantectomy, rads and tamoxifen), that sometimes I feel a bit of a fraud for frequenting this board.

On the other hand, because my circumstances are so rare, they may benefit those who come after. For example, I was beside myself when I learned I was FISH+, and that I was not to be given chemo or herceptin. Now (three years later), I see that was the right decision - well, so far ...

Bill, I am so sorry for your loss, but am glad you receive comfort from this group.

Mcgle (UK), who is a pretty average cook!

of course you belong here, you have experience you can share with the new people and i learn new stuff all the time which i like even though i'm 4 yrs ned.

Thank you, Juanita.

Guess we never stop learning about this cra**y disease!

Mcgle (UK)

MCGLE
We are such a vast group of so many treatments...that si exactly why you belong here...you can help others and they can help you should you ever have any questions...this is the ONLY place to come for love, friendship and true understanding, with jokes and laughter mixed in. Welcome to our group....

Well done for getting to six years, Sheila. But you have had to go through so much to reach this milestone, and I haven't. That is what makes me question whether I belong here ...

Mcgle (UK)

I understand. I feel guilty not to have been as sick as most on this board.
However, I tend to read more than I post and
I feel sooooo lucky to have found my cancer early.
My husband is now facing Multiple Myeloma.
I have yet to find anything that compares with this board related to his cancer. Again, we are so very lucky it was found early. We are hoping to be at Dana Farber for a stem cell transplant for him soon!

I appreciate the folks who post here, that we all may find a little knowledge and confidence regarding own own situations. K

Yes, Karen - we travel unchartered terrain.

I hope your husband makes a full recovery.

Mcgle (UK)

Diversity
 

I have thought about this question too, Mcgle. There are many people who lurk and listen, and that perspectives from all stages are valuable. You also are not in the USA and there are lots of people listening here for whom the choices ARE not the same as those in the USA -- Some better and some not, but having that international information from someone who is dealing with different circumstances and options can mean an awful lot to those who share that situation. I think of it sometimes because some people who are close to cancer centers may give advice to others based on that access to care, whereas from here I know what a cancer patient in many areas of Alaska faces and it is a very different set of circumstances and choices. We all have different pieces of the puzzle that we can use in putting it together.

AlaskaAngel

I wished I had stayed on this board 5 years ago - I think I had registered and got on the board for a very brief moment. It might not have made any difference. But from reading the stories I might have been able to detect my recurrence much earlier. (Instead of blindly believing my doctor and the scan technicians.)

Thanks again for your input, ladies.

Cost always seems to be an issue here in the UK (most people receive NHS treatment).

But I did seriously question my dx upon learning I was FISH+, and only now accept that my light tx was probably correct.

This is indeed a grey area.

Mcgle (UK)

Thank you. We are praying that they can get him into remission. No cure for myeloma.
Still, we are very lucky to be here searching for answers and cures.
Take care. K